POZ Community Forums
Main Forums => Living With HIV => Topic started by: woodshere on February 05, 2007, 03:40:29 pm
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After being diagnosed last March, in April I got my cd4 count of 179 on a Thursday, got meds on Friday and started on Saturday. I had no choice, so it did me no good nor did I have the time to worry about taking them or their side effects. The simple fact was that if I wanted to improve my odds of living a long life I had to start, period. So I it is difficult for me to understand why so many have such anxiety about taking meds. Of course there are short term side effects, which I never really experienced and as my doctor said even if a small % of users have side effects they have to be mentioned even when the majority have none. Long term effects, sure, but do I really have a choice. I guess I do and could refuse to take HAART, but if I am going to do that why not just put a gun to my head.
None of us, HIVers, cancer patients, diabetics, etc, like to take medicine or have chemo or dialysis, but you know sometimes we have to do things we don't like. I guess it's just the way we look at things. I am not criticizing those who dread taking meds or worry about it, I just wish I could understand it better. I know once you start that in all probability it is for the rest of your life and I know it is expensive and a hassle, and in some cases you might to try various combos to find one that works. But really is there a choice? And if there isn't a choice, then why worry or stress out about it, just accept the fact and say, "OK, now what?"
Woods
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Woods,
I found myself in a similar position in October, 2004 when my CD4 was 169 (with typical procrastination I put off getting blood drawn for 5 months, because I wanted to start HAART in the 200+ range). Given such situations we both did what seemed to be a logical, albeit permanent, step in dealing with HIV. The permanency of adherence is one reason I waited so long to start meds. I knew if I wasn't on the bandwagon I'd quickly fall off. And, I gratuitously repeat with profound gratitude, I let thousands of people before me be the initial guinea pigs.
My short-term side effects were minimal and so far, except for possible lipodystrophy (I refuse to accept any responsibility for having to increase my pants by another size), there are no problems. You and I are some of the lucky ones.
Not everybody is as lucky as you or I. The meds cause regular problems for some and many of the drug-experienced HIVers are running out of options (and even some drug-naive HIVers are). Some who've been on HIV chemo for a long time have experienced serious side effects from long-term use of a toxic substance.
The real point of my blather is initiating HAART is a very serious decision and I fully understand the fear and anxiety others feel about beginning. I hope and believe the situation is better for drug-naive poz people than it's ever been but starting HAART is still a daunting step to take.
Boo
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And if there isn't a choice, then why worry or stress out about it, just accept the fact and say, "OK, now what?"
Fear of the unknown? Fear of the unexpected? Anticipation of the worst case scenario?
Everyone is different. In my case it was take these or get sick and die quicker.
I take meds twice daily (morning and evening) and like it or not it's what I need to do. I'm not overly concerned with the toxicity because thank God I can't predict the future. A speeding bus could take me out tomorrow, and I would have wasted all that time worrying for nothing. I refuse to live my life in fear of what may or may not be.
Daniel
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Woods,
I echo your sentiments. I totally do not understand all the hand-wringing revolved around starting meds. First of all, there are people deciding to wait til it falls from say 300 to 250, or that the % drops another point or some such hair splitting. What do you buy? Another 2 or 3 months off meds, that you totally won't remember five years later. Courting danger at low numbers is not outweighed by avoiding side effects. My first combo made me sick as a dog. After 2 months I ditched it and got on another one. After two years on that the diarrhea became constant and I ditched that and got on another one. Things have been good on the current one for a while. I suspect that some of the delay has nothing to do with a person's fear of medication and its side effects, and everthing to do with a personality that agonizes and delays every decision. Blue sweater or green? Oh god what if it's not the right one? Meds or no meds? Oh god what if I start ten tcells before I have too? Here's my rule of thumb advice for what it's worth - if the idea comes to you that maybe it's time to start - start. If your doctor gives you the option to start - start.
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Thanks guys! I was beginning to think there was something wrong with me because I really didn't and don't stress about it and hope I won't. As I read other posts and threads I want to try to understand what others are feeling and I was just having a real hard time with this one.
Woods
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And if there isn't a choice, then why worry or stress out about it, just accept the fact and say, "OK, now what?"
Fear of the unknown? Fear of the unexpected? Anticipation of the worst case scenario?
Everyone is different. In my case it was take these or get sick and die quicker.
I take meds twice daily (morning and evening) and like it or not it's what I need to do. I'm not overly concerned with the toxicity because thank God I can't predict the future. A speeding bus could take me out tomorrow, and I would have wasted all that time worrying for nothing. I refuse to live my life in fear of what may or may not be.
Daniel
While I agree with all of you I'll admit this has been the biggest issue at hand for me personally. There are so many different views out there on when to start and it is fear of the unknown. What complications will I experience? Will these drugs make me more sick or unable to function? What if I loose my insurance and don't qualify for ADAP and my counts are too high for me to continue to get the meds from the free clinic.
I have heard a wide variety of opinions from others on when to start or why to delay it as long as possible. Just the fact that physicians leave this up to the individual when to start unerves me. No one seems to have the right answer.
I agree that the anxiety and stress is unhealthy, but I think those in my position are just trying to seek out the best information possible and to make an educuated decision.
I understand the concept of well you can either take this or die, but that's a little too simplistic for me. I want as much information as possible before I make a decision.
Clearly, in the past once decent drugs were available everyone was advised to start immediately. At some point a few years back they decided to base it more on an individual basis, and most recently some reports are indicating starting earlier might be better.
If the information was consistent and everyone's stories were consistent I'd have no trouble making my decision. The information isn't consistent and none of the personal stories are consistent so I sift through it all and try to find what has worked best for most people.
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Hey Woods,
It may be just coincidence, but I was thinking this same thing this morning. I deal with a lot of people who like to trot out the "what ifs" until the cows come home - or they end up in the emergency room, two steps away from the morgue.
I have never understood it. I did take slightly longer to begin meds than you. My doc broached the subject in January, I thought about it during February and started in March. It wasn't that I feared starting the meds. I was trying to find out if my insurance would pay for them. It did.
Mind you, this was early on in the cocktail era.
I started a regimen in March 1996, toughed it out until May 1996, switched and have been going strong ever since. Like Razorbill, I found a regimen that worked for me and didn't cauise too many problems.
I think there is too much unnecessary worry about potential side effects. Some people get em, some don't If you get them, then deal with the situation. But life is way too short to fret about what might be.
Edited to add: Wesley, that is the frustrating thing about HIV - it is different for everyone. I have general rules of thumb to go by, and I still believe starting earlier and preserving what immune health you have, is better than letting things go to pot and then trying to rebuild.
There are no hard and fast rules to dictate when someone should start meds.
But I can guarantee that the end resuilt of not taking them make the side effects look like a walk in the park.
HUGS,
Mark
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the drugs aren't really that big a deal till they start making you sick or give you lipo(fat deposits). Some people have no problems and others do, but either way I would rather be alive feeling like shit than dead. Except when I was on liquid norvir and bunch of other pi's back 90s, than I wasnt sure.
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While I agree with all of you I'll admit this has been the biggest issue at hand for me personally. There are so many different views out there on when to start and it is fear of the unknown. What complications will I experience? Will these drugs make me more sick or unable to function? What if I loose my insurance and don't qualify for ADAP and my counts are too high for me to continue to get the meds from the free clinic. I have heard a wide variety of opinions from others on when to start or why to delay it as long as possible. Just the fact that physicians leave this up to the individual when to start unerves me. No one seems to have the right answer.I agree that the anxiety and stress is unhealthy, but I think those in my position are just trying to seek out the best information possible and to make an educuated decision.I understand the concept of well you can either take this or die, but that's a little too simplistic for me. I want as much information as possible before I make a decision.Clearly, in the past once decent drugs were available everyone was advised to start immediately. At some point a few years back they decided to base it more on an individual basis, and most recently some reports are indicating starting earlier might be better.
If the information was consistent and everyone's stories were consistent I'd have no trouble making my decision. The information isn't consistent and none of the personal stories are consistent so I sift through it all and try to find what has worked best for most people.
Wesley, I guess I am lucky from the standpoint I haven't had to deal with the worry. My doc said you gotta start and from everything I had read I knew with my cd4 count he was right. I guess I would trade the low cd4 count with a high one and contend with the decisions you are having to make.
It is so funny HIV effects each individual differently.
Woods
It may be just coincidence, but I was thinking this same thing this morning.
Or maybe it is the fact that great minds think alike.
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I agree with Wesley. I noticed that those who've responded so far had really no choice but to start meds. Pretty easy decision when the doc gives you a year or two to live if you don't start 'em!
But for those of us hovering in the mid 300's to a high of 500, it's not cut and dry.
It is for the rest of your life, everyday. Definitely daunting.
Another concern regards going to work with nasty side affects. Unfortunately, I can't just up and leave the room every 15 minutes.
I think about it every 2-3 months when the labs are done. If I can be med free for another 2-3 months, I'm going to. I know what my limit is, and my doctor is on my butt. She didn't like the last reports direction, so no 3 month wait for me!
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for me, it was sort of denial of being ill. there are "AIDS dissident" information on line and they are quite active. I was a total believer in all their theories until I got a thrush, then PCP.
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It's a big deal if you've been perfectly well and healthy living with HIV and your first ever experience of treatment puts you in hospital!
It took 8 years before my cd4 count and % fell to a level where my doctor recommended starting treatment (272 and 20%). I duly agreed because I didn't know any different. I wasn't stressed about it nor did I have any anxieties I just followed my doctors advice like the good patient I was back then!
Unfortunately I suffered the allergic reaction to Abacavir which meant that within 5 days of starting my cocktail of pills I was admitted into hospital due to the severity of the side effects.
So to go from perfectly well, never a day's illness from HIV to ending up spending a week in hospital due to meds does somewhat cloud my opinion of them.
Also I think the picture is very different if your first ever blood results are under 200 or if you've been ill as a result of HIV. Then you're already at a different point to someone like myself who took 12 years before ever having an HIV related illness.
I do play the numbers game, call it 'hair splitting' if you want but I have 16 years worth of blood results to base my decisions on. Having spent only 22 months on treatment in 16 years I know what works best for me and that seems to be to stay off medication for as long as possible.
And yes, if that now means I might get sick and die sooner then that's a risk I'm prepared to take.
I hope my insight will give you some understanding of why meds are a 'big deal' for some of us.
Best wishes,
Emma
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"for me, it was sort of denial of being ill. there are "AIDS dissident" information on line and they are quite active. I was a total believer in all their theories until I got a thrush, then PCP. " quote egello
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I am very sorry to hear this, egello.
Modified to add: Emma is to be commended for learning what her body tolerates and what it doesnt. She, however has had an advantage that some do not have: she has 16 years worth of blood results. For some people that is not the case. They progress rapidly to thrush and PCP.
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If the information was consistent and everyone's stories were consistent I'd have no trouble making my decision. The information isn't consistent and none of the personal stories are consistent so I sift through it all and try to find what has worked best for most people.
Don't forget HIV is a very personal virus. What went into you mutates insanely fast into HIV redesigned for just you! What you experience will be unique although you may share common factors with people (like med side effects, drug regimens, opportunistic infections, etc.). HIV is also one of the only maladies in history to be stereotyped as a "gay disease" and there is still plenty of ignorance and stigmatization on that front. On top of that starting HAART is a real event that clearly demarcates your life yesterday from today on (i.e., when you begin HAART... duh), forcing one to face, maybe for the first real time, that she/he has HIV disease. The meds make HIV literally tangible.
The only person who can decide when to go on meds is you. You have to be ready to try whatever it takes to find a combo that doesn't make your life hell and knocks the bejesus out of the virus. If you're lucky your first regimen will be relatively easy to tolerate and if there are side effects they won't last long. No one can authoritatively say what your prospects are past 20 - 25 years since the [modern version of the] virus is only that old. I believe there is reason for optimism but we must be realistic. There is still no cure and the long-term safety and efficacy of current treatments is unknown (or well known as toxic). We have yet to find many, if any, substances that do not harm the human while controlling the virus.
Good luck with your own special little virus.
Boo
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I was diagnosed with HIV in 1989. In 2000, I started my meds. I realized I had reached a point of no-going-back. Not that I had any choice, mind you. Once the ritual of taking meds becoming part of a daily routine, there isn't a single day when I can just forget I am HIV+. That's the only aspect of starting meds that I see as being objectional.
Otherwise, it's extending your stay on this earth. What's not to like. AIDS drugs? Just swallow, and fagetabouit. Get routine check-ups. No sense in fretting and worrying.
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"for me, it was sort of denial of being ill. there are "AIDS dissident" information on line and they are quite active. I was a total believer in all their theories until I got a thrush, then PCP. " quote egello
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I am very sorry to hear this, egello.
A prime example of why denialist are not allowed a voice on these forums. They're just too damn dangerous!
Sorry you had to go through that egello!
Ann
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I agree with Wesley. I noticed that those who've responded so far had really no choice but to start meds. Pretty easy decision when the doc gives you a year or two to live if you don't start 'em!
But for those of us hovering in the mid 300's to a high of 500, it's not cut and dry.
It is for the rest of your life, everyday. Definitely daunting.
Another concern regards going to work with nasty side affects. Unfortunately, I can't just up and leave the room every 15 minutes.
I think about it every 2-3 months when the labs are done. If I can be med free for another 2-3 months, I'm going to. I know what my limit is, and my doctor is on my butt. She didn't like the last reports direction, so no 3 month wait for me!
Actually, I also have 16 years worth of bloodwork to base my decisions on.
I have spent 11 years on meds, and went at least 11 years without them. I have never had an OI and my lowest CD4 was about 440.
I, however, never wound up in the hospital as a result of the meds. I did have my encounter with the old Saquinavir, which is why I switched to Crixivan.
So, I could understand why Emma is a bit gun shy. But, as Bear said, many people don't have the luxury of many years under their belts before the meds issue arises.
Understanding Emma's reluctance also doesn't address the issue of people staying off meds at all costs because of a fear of what might happen.
The bottom line is it is a given what will happen without them - at least for most everyone except the elite non-progressors.
Maybe that's why I have trouble understanding. I have seen the outcome without meds. I guess that's why, for me, it was a no-brainer.
HUGS,
Mark
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A prime example of why denialist are not allowed a voice on these forums. They're just too damn dangerous!
Sorry you had to go through that egello!
Ann
Anne, they aren't really "denialist" they are dissidents, they do realize that peopel are getting sick, but their theories of why and how to treat them are so hoakie,,,, but being a dummy and punk that I am , I believed in all that...
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I was scared about NOT starting meds. On my last visit to the hospital (31/Jan/2007) I met a new Dr. because mine was fully booked (public health system). This Dr. went through my file and said my CD4 count was 800. I told him that what I really wanted to know is if I was already undetectable. He answered I must have been undetectable for a long time with that counts...Then he realized I had started meds 5 months ago with a CD4 count of 503. He said nobody wants to start meds so "early".
He didnīt say if it was a good or bad choice. My Dr. did not say anything either when I decided to start.
I think it is not a big deal taking meds. It is like brushing your teeth or shaving every morning. Of course I am new in this I am not suffering form lipoathrophy or any other toxicity yet. But why should I worry about the future? Maybe there are much more worst things waiting for me. Lets start suffering when there is really a reason to do so. Swallowing two pills a day is easier than thinking what to cook for lunch.
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We are placing a great deal of responsibility upon a person to decide whether to start meds early, late, or not at all. We are also presupposing that the individual is making an informed, intelligent decision. But, as someone noted, some people can't decide whether its right to wear blue or green on a given day. Others are seeing doctors whom they do not feel they can trust. Others may be making the decision based on financial factors.
Reality tells us that some people avoid taking meds for fear of side effects (a whole forum just for that topic!), possibly because of fear of the meds themselves (emma had a bad allergic reaction and has a greater fear of meds than mjmel who simply finds the daily reminder that he is HIV+ objectionable), or possibly because of denial (i.e. you are less HIV+ if you AREN'T on meds? is this the demarcation of which boo speaks? or AIDS dissident information per egello). So while the question is subjective, people seek objective standards by which to make the decision (or not make a decision, as the CD4 was just too low and the VL too high thus ruling out all alternatives).
It is the application of objective standards to subjective circumstances that is the domain of those from whom we seek advice and call professionals. Certainly, the term professional has been abused lately so that in common parlance it merely means primary occupation, such as a professional "waitress" or "dog groomer", etc. But, the term professional formerly was restricted to those who dealt with the human condition: doctors, lawyers, priests, and architects.
I think part of the problem lies in people giving too great a weight to the experiences of others, especially where individual facts and circumstances may be critical to determination of the outcome. As Wesley points out, the information isn't consistent. As Boo points out, HIV is a very personal virus. Therefore, a person considering whether to start meds, must consider the advise of the medical professional whose education, clinical experience, and individual diagnosis are calculated to provide the best possible outcome for the patient and give it the greatest weight.
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Hey Blondy,
The issue of popping pills isn't what bothers me. That's not a big deal to me. Your counts are impressive and it's nice to hear a NOT HORRIBLE story ; )
Unfortunately, the vast majority of med stories I run across are people complaining and comparing side effects. I'm glad to hear that you have had a good response and others as well.
Then again I take it you don't have the additional financial concerns of those of us in the US for those drugs?
Wesley
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I think, AustinWesley, you want too much. You want to distill all our experiences and find a happy medium. There's no bell curve of experience. You want to be assured of financial and insurance security. There's no such thing. You want a professional to tell you what's right. It's your call. And you know, no matter how good you get it down, and how thought out it is, it may all fuck up anyway. Such is life. Do, don't think. (Well think a little.)
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My humble opinion about the controversy of starting meds or not is based on what others had said earlier fear of the unknown. We read so much about the side-effect, lipo and strict regimen which is a reminder that if we don't take these medications properly we can die. When you are diagnosed and you don't start meds, I suppose people feel a sense of power, they feel that their body is strong and capable of beating this virus for many years. I guess when the doctor tells you it's time for you to start meds it's almost like hearing you either take this or you die. It is almost like a reminder that this is the beginning of the end. It's based on fear and adapting on a lifestyle with meds. A lifetime of meds is also overwhelming., if the docs only gave us hope that med interruptions were possible to do, i think I wouldn't mind starting meds, but we aren't even allowed a holiday.
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I was a LTNP and went one month shy of 21 years before my CD4s crashed and was hospitalized for a month. The virus work different ways. The meds are alot better than in the beginning with AZT which at the time took more lives than it helped. That was the only drug there was. I'm greatful for being able to go that long without meds. I have worse meds to take than my HIV medications.
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I think, AustinWesley, you want too much. You want to distill all our experiences and find a happy medium. There's no bell curve of experience. You want to be assured of financial and insurance security. There's no such thing. You want a professional to tell you what's right. It's your call. And you know, no matter how good you get it down, and how thought out it is, it may all fuck up anyway. Such is life. Do, don't think. (Well think a little.)
I don't think I'm asking too much. I don't value my doctor's opinions all that highly. I have to live with this, not them.
But in essence, you are correct in your analysis of what I'm doing although I probably wouldn't use the term distill. I would say yes I do pay attention to the collective experiences of everyone and seek out the similarities among the people who've managed to maintain a reasonable quality of life for as long as possible.
And by that, I mean, a reasonable quality of life that I can live with. My standards are different than others. To each their own!
Sure, I could have that attitude that whatever will be will be and to an extent I do. I realize I have to learn to live in ambiguity much of the time, but I don't feel for me ignorance is bliss either.
I don't think I'm wasting my time at all. In fact, quite the contrary. So, isn't that why most of us are here? To learn from one another and share.
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I don't think I'm asking too much. I don't value my doctor's opinions all that highly. I have to live with this, not them.
But in essence, you are correct in your analysis of what I'm doing although I probably wouldn't use the term distill. I would say yes I do pay attention to the collective experiences of everyone and seek out the similarities among the people who've managed to maintain a reasonable quality of life for as long as possible.
And by that, I mean, a reasonable quality of life that I can live with. My standards are different than others. To each their own!
Sure, I could have that attitude that whatever will be will be and to an extent I do. I realize I have to learn to live in ambiguity much of the time, but I don't feel for me ignorance is bliss either.
I don't think I'm wasting my time at all. In fact, quite the contrary. So, isn't that why most of us are here? To learn from one another and share.
Austin, I assume you are young and have not started meds yet. Don't know your numbers but from my experience, meds is something we all must encounter and although it is best to save the meds for when you CD4 cells reach a 350 when you see those CD4 number decline even more than 350, you better start getting yourself ready to start meds. It's not a decision on why? maybe i can wait. Well if you wait for the next labs to see a number in the 200's be prepared to go through some physical changes such as thrush, diahhrea,fatigues and more stuff. I went through a short period of fatigue and have thrush having a CD4 count in the low 200's. That is a sign that AIDS is just around the corner and that is alot scarier than starting meds at 350 where you can actually sit down and decide what day you will start, what regimen works best for you and so forth. I am looking forward to meds right now because I feel like any day now I can come up with an OI and then be in the hospital, and when you end up in the hospital with PCP or anything else, then you know you have AIDS. PCP sometimes happends when you have a count in the 200's or even in the high 100's. So listen to what the majority of docs suggest and start your meds once you reach the standard number of 350 and stop worrying about side effects. IF it happends in 2007 or in 2008 they still are gonna occur. I bought my imodium and got my bucket of puke next to my bed and I am ready to fight this freaking viruse who is messing with immune system. If I had the opportunity to start at a CD4 count of 350 or a bit higher I would have now that I know that I see the thrush and feel like I am loosing weight.
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Ironically, my last CD4 was right at 354. I know it's just a matter of time, and I do appreciate you sharing your experience and I won't wait that long.
I've kept up with your posts and I understand your frustration too.
LOL @ the Immodium and bucket ;)
Hang in there!
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I wonder if part of the issue is that when you start taking meds you can no longer deny that your life has changed because you have HIV/AIDS. My thought is that while you don't have to take the medicine you can live in a partial denial of the inevitable.
For my part, there was not question of having to take medicine. My cd4s were 145 and my vl was 39k. Also, I had already had shingles, mono and a string of other illnesses that were pointing to the fact that my immune system was no longer able to fight off illnesses.
Further, I was already taking meds daily for high blood pressure, so I was able to fall into the daily regimine. So taking a few more pills wasn't the issue. The issue for me was WHAT I was taking them for...
Ty
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guess it's just you and me, Wesley!
I don't feel ANY power over my HIV. It will be what it will be and do what it will do. And I will carefully monitor the #'s. My doc told me to start considering the meds when I had 347 CD4's. I went back in in 6 weeks, and CD4's went to 507. She told me she had no argument for me starting meds at the time. When the next labs were 398, she has me back in 2 months instead of 3.
Of course the day will come, and I will take the meds. I know that. It's been a little over a year since I'm infected. Wesley also.
I will owe uncle sam about 9k for my 2006 taxes. Do you really think I'm sending the check in today??
ROD- were you on a 3 month lab schedule when your CD4's plummeted? Just curious.
Paul
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I think I am the only person on here looking forward to starting meds. I look at it like this, my body has been fighting this virus on it's own for 10 years this year. It can only do so much and considering some of the posts I have read on here, I do consider that a blessing. I also do not want to wait til my body is too weak to fight with the help of meds. I have had this talk with my I.D. doc and he feel that if my cd4 drops below 300 then it's time. At the moment my cd4 is 372, it just increased from 307.
When I first got here, I was about trying to give those good positive thoughts, and I still do at times. I can not second guess how someone is feeling or how this virus is affecting them. I only know how it is affecting me. I also feel that I can't tell someone when to start meds, that is their choice and up to their doctor. I can't tell them how to feel about starting them but only my opinion on how I feel about starting them. I really don't think I will have a problem with adherence at all since I am getting the experience of taking pills now because of my diabetes. But my pillbox reminds me to take them and due to my sleeping patterns it's easy to keep track.
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Hey Queen,
Thanks for your insight. Have your counts remained over 300 for 10 years now? I can understand delaying meds if I had these circumstances especially in light of diabetes as well. My mom's diabetic and runs in the family so I've made sure I do what I can to avoid that.
And Paul, that tax bit just made me bout burst out laughing ;) I can so relate.
If my counts had been below 200 I would have no question about the med debate, but someone with experience such as Mark or Queen or Paul who present factual information have my interest.
I'm not out to win any popularity contests. I'm here to learn.
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Woods....
To me its a matter of mind over matter. I watched David give up, get tired of fighting and literally waste away. I loved him dearly and hated that he had given up...leaving me behind without him. Selfish me...but I knew it was his choice and I had to abide by it. He had been positive 16 years and had on two other occassions almost died but somehow regained his lust for life and got out of bed. I suspect I had thought he'd do the same thing again but he did not. He died at 32.
As far as taking meds...I just began again. Having contracted Steven Johnson's Syndrome in March of 2005....I discovered first hand what a severe reaction to medication can do to the human body and the human spirit. I had just signed onto Aidsmeds when I contracted SJS so when I returned from the hospital and logged back on....I found many here who gave me the support to carry on despite one challenge after another....those who know me know my story. I was taken off meds in the hospital and chose not to take them until recently when my numbers made it worth the risk of contracting SJS again necessary. So far the combination I'm taking seems to be working for me....side effect wise....we'll have to see my labs later this month to know if they're working.
It was only after connecting with people here that I manage to find my way to a better place...between mourning David, recovering from a suicide attempt, SJS and then Hurricane Katrina taking most of my possessions....I thought life had really crouched over me and dropped a big one on my head. I was wrong. Very wrong..... The old saying "what doesn't kill us makes us stronger" is very true. Having gone thru all the things I had to go thru during the two years that followed David's death....I can honestly tell you now its a matter of mind over matter. Nothing is written in stone and anything is possible. Two years ago I couldn't even pay my rent...I was lonely and disconnected from the world....I was depressed beyond belief and miserable.....and NOW Today.......everything is different. I have a new home, a new car and yes a new lover. Money is no longer an issue and I spend my days (the ones I can get out and about) trying to find ways to help others like myself. My life is no longer about just me....its about the people that inhabit this world with me. It's about making a difference..............and making the most of this gift we call LIFE.
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Hey Queen,
Thanks for your insight. Have your counts remained over 300 for 10 years now? I can understand delaying meds if I had these circumstances especially in light of diabetes as well. My mom's diabetic and runs in the family so I've made sure I do what I can to avoid that.
And Paul, that tax bit just made me bout burst out laughing ;) I can so relate.
If my counts had been below 200 I would have no question about the med debate, but someone with experience such as Mark or Queen or Paul who present factual information have my interest.
I'm not out to win any popularity contests. I'm here to learn.
No problem, Wesley, I am here to share if nothing else. Yes, my cd4 has always been over 300, the 307 was the lowest it has ever been. My doc will not start until under 300 but my diabetes also has to be in check too. This is something that has been driving my primary doctor crazy. He increased my doses on 2 out of the 3 meds I take now. I have also started on Tricor and am on an aspirin regime.
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Hey Queen,
That's pretty impressive. I'm assuming you are Type 2? That's interesting. I'm now wondering if you had already healthier eating or exercise habits due to the diabetes?
Or are ya just lucky and have good genes?
Thx for responding.
Wesley
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obviously i cant top david25luvit story....sorry bud....sounds tough
but ill tell ya why itz a big deal to take meds; especially starting. they make you sick as F^%K!. diagnosed w/ cd4 104 & vl 156K. yikes. no question there....med time. doc gave me some slips and said c me 4 wks. well got the bottles on fri fisrt dose <kaletra&truva>. by sunday i was itchinh like crazy. w/ in a week i was so nauseated i was suicidal! cant sit up, cant sit down, cant lie down. i ate grilled cheese for 3 months....yuck. and lets no forget my good friend mr rash. im jealious of this people who can pop some pills and move on down the highway.
doc ask me y i dont get tested sooner? i think well i squeezed one extra year outa life. i dont know...medically if ya gota have it take it. but humbley i say wait till last possible moment,
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sounds rough Fierce, but my last possible moment will hopefully be a lot sooner than yours was!! ;)
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Woods, Austin, and others,
I do agree that the meds issue is very personal. I was diagnosed just over a year ago and was on meds within 3 months. My take was that I wanted to help my body fight this virus. I did lots of reading and decided that for me, early intervention was the route to go. And I think more and more research is saying that starting somewhat earlier is better. But it is a very personal decision. I started with a CD4 count around 520. Now I'm up to 707 and 24%.
I was somewhat scared to start meds. I took a week off work to try to make it through the side effects. I remember taking my first dose and laying there in bed thinking... hummm, maybe they didn't give me the real stuff. Ultimately I did have a few issues to deal with. Weeks 3 and 4 were pretty tough with a very rare side effect. But for me, I wasn't sick at my stomach, I only had a slight rash, and after I got through the bout with leg pain, things have truly been smooth sailing. Yes, I'll have one of those groggy mornings every now and then, but overall I know for me I made the right choice to start when I did. I say my VL plummett from over 66,000 to about 600 in just a month and to undetectable in 2 months.
I know there have been some horror stories about starting meds. But for me, it was reallly no big deal. Yes, I had to change one of them after only 17 days. But the doctor made the change and we got things lined out and now I'm back to working more than I care to and still planning on being around for a long and productive life.
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Hey David,
Thanks for that information. May I ask which meds ya started on and which one you substituted early on?
Appreciate hearing a success story from you.
Wesley
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Hey Queen,
That's pretty impressive. I'm assuming you are Type 2? That's interesting. I'm now wondering if you had already healthier eating or exercise habits due to the diabetes?
Or are ya just lucky and have good genes?
Thx for responding.
Wesley
Yeah, I consider myself blessed indeed. Yes, I am type 2 and just diagnosed about 2 years ago. I really don't exercise, not that I don't want to but doesn't have money for Y membership, that like over 200 bucks. I have been watching the info commercials on the home exercise machines but I live in a small apartment. I was thinking of some exercise dvds...What ya think? I don't consider myself lucky but instead blessed.
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LOL, I freakin hate exercise, but I do some swimming and hop on a machine once in a while. I think walking (which is free) is the best exercise for everyone. I'll admit I should do more of it.
I'm now more confused. Your first post said you were diag. 10 years ago and this one says 2. Did I miss something?
Wesley
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Good ol' Ben Franklin said: "Nine out of ten men are suicides."
Yup.
And I STILL find it hard to understand why a friend of mine absolutely refused meds. No way, he said. And he died in 2004, with a CD4 count of 4.
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I remember how the doc and nurse were hounding me about starting meds. (Maybe I was in the hit hard hit fast era). Guess I was very lucky to start at CD4 330 with what is now believed. Looking back in time, if I could have waited 3 or 6 mths longer, no big deal now.
Starting on a first line combo today, with good adherence a must, would be great news. I would not (imo) let my immune system get too chewed up anticipating at least some sort of therapeutic vaccine in the near future.
Just my guess.
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I had to go on meds right at disagnosis (220 cd4 June 1997) it was only 4 months that retrovirals were covered by social security in my country of origin.
My dr didnt tell me so much about side effects then - not all about them was known - so I never really wondered if it were the hiv, the recovery, the stress or the side effects, I just thought survive, survive, survive.
I understand for some people with a poz diagnosis but good cd4 numbers it must be excruciating to see the cd4s recede and the date for starting meds getting nearer and the worry about side effects, which can have unrealistic aspects as all fears have, getting bigger. I dunno how well I would have coped with that constant thought.
And a friend of mine who was hiv poz a little longer than me, since before meds were really cocktails that started to work, never wanted to take medecine, also when he knew I was and saw me doing well, he died in the summer of 2001, I respect his choice though I find it difficult that he's not live anymore. He was a writer , he wrote under the pseudonym Laurent Degraeve, his last book was a manuscript found in his drawer after his passing, it' s in French "Je suis un assassin" (= I'm an assassin), editions du Rocher, he wrote 4 books that did well, he was barely 30. Sorry for veering off topic here.
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Thanks Woods for posting such an interesting topic. I find it interesting how everyone has their own personal outlook on taking meds.
I started on AZT in 84, as it was the only drug available. I was told to take 12 pills every 4 hours. This went on for over a year. When a new drug came along, I was so happy I just took it, I didn't even bother to read the side effects, I was too busy being happy that a new option was available. I had NO choice, so I figured why bother even investigating.
So I agree with those of us who think it was "A no brain-er." Life is all about perspective, and this thread points that out more clearly then most.
Here's to LIVING! We all should be grateful for all of the drugs that are now available. I for sure am!
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The only person who can decide when to go on meds is you.
Amen to that, Boo!
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In answer to your question Wesley...I started out on Truvada and Sustiva. After taking Bextra ( a non narcotic pain killer)
which they prescribed for a cracked rib and to get me off narcotic pain killers, I contracted Steven Johnson's Syndrome...
a rare and sometimes fatal chemical reaction to medication. To understand it...just imagine yourself being microwaved cooked
inside and out. I wasn't suppose to survive....they told David's mother (whom they mistook for my mother) that I wouldn't
live out the week....of course I surprised them did I. I lost all my toe nails and finger nails...my tongue and the inside of my
mouth peeled....as did my hands, feet, arms and legs but mostly my trunk...my chest and my back. Ordinarily they transfer you
to a burn unit but Gulfport Memorial Hospital didn't have a burn unit.... Now once you've contracted SJS....you're three or four
times more likely to contract it again....and with that in mind I chose not to return to my med's.....
A few months ago my numbers dropped CD4:200/VL 100,000+ and my doctor pretty much insisted it was time to start
the meds again. We both agreed that Sustiva was not an option ....so I'm currently taking Truvada/ Noivir / Rayatez....with
Lori tab 10's for pain...Soma...muscle relaxers....and when needed for depression....ativan I refuse to take anti-depressants on
a daily basis... Everytime I take my meds I wonder "will I contract SJS again?" believe me if you've ever been thru it....you don't
think you'll survive it again and when you die from SJS....its usually because your brain is literally cooking...so imagine what thoughts
and outrageous imaginings one might have....its terrifying....more so than dying of AIDS. And I know because I watched David die
everyday for seven months while he was in hospice. I know this more than answers your question but I wanted you and others to
see the larger picture insofar as med's and I are concerned.
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One thing I had clear in my mind is that I didnīt want my body to waste energy fighting against this virus. I prefered the meds to do that work for me and let my body use its resources for better things.
I only know the possible side effect of the meds I take of what I read in these forums. I have never read the instructions leaflet contained in the meds. I just throw the leaflet to the trash bin. If you donīt think about side effects an about the what ifs, life is much better.
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Yes, I suppose it is a "no-brainer" that you need to take meds if you have a very low CD4 count or are experiencing OIs. But for a lot of us, it is not that clear cut, we find ourselves in the grey zone where you have to weigh up pros and cons. To me, it is not a trivial thing. The big deal for me is:
- the side effects - somewhat worried about the short-term ones (david25luvit's story absolutely terrifies me, even though I appreciate it is a rare condition), but much more worried about the long-term ones, particularly those that might only become apparently many years down the line. They are particularly worrying because once I start the meds then I really will need to keep going - yes, I might be able to shift to another combo but who's to say they won't be equally problematic? Deep down, I suppose the fear of the more disfiguring side effects (lipodistropy/lipoastrophy) plays a big part in my anxiety. Yes, there is a decent chance I won't experience any at all but that doesn't mean I don't worry about the small chance I will.
- the sense that the clock then starts ticking - once I start then it seems to me that the chances of a failing regime gradually increases and the toxicity starts to build - there was also that recent bit of research suggesting you can expect an average of 24 years on the combos:
http://www.nam.org.uk/en/news/23C53AB1-15B6-4F44-A50E-5605C412C2B7.asp
That being the case, it makes every bit of sense to delay the onset of treatment until it is necessary.
- however way I turn it starting meds is going to be a milestone in the trajectory of my living with HIV - when first diagnosed I definitely had the sense that starting meds would be 'the beginning of the end'. Then someone pointed out to be that you could equally see it as 'the end of the beginning' - I'm starting to come round to that way of thinking. It will, however, still be a dividing line of sorts and a very stark reminder that my body no longer can fight the virus without outside help.
Don't get me wrong - I am very, very grateful the meds are there, side effects or no side effects. I am also very grateful to be living in a place where I won't need to also worry about financing them - I can only imagine how stressful it must be to worry about that on top of everything else too. I am also cautiously optimistic that the future will bring further improvements, and perhaps even a therapeutic vaccine.
The meds are definitely my friends. And I am certainly very encouraged that so many of those already on meds feel it is uncontroversial - it gives me some belief it may in the end seem totally uncontroversial to me too once I start. For now - and however irrational it may seem to some - it is a big deal to me.
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Although a very personal choice, it is a big deal starting meds because everybody have to be facing some sort of side effects.
The difference is whether starting while following the guide lines where your immune system is getting damaged, or while being sick with major infections.
It is a lot easier to get used to them being relatively healthy, fit and still working and active in your life, then being in hospital on your death bed dealing with complications.
The one major point here is when of course, and there is no going back. If you start you have to keep at it for good.
Alain.
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- the sense that the clock then starts ticking - once I start then it seems to me that the chances of a failing regime gradually increases and the toxicity starts to build - there was also that recent bit of research suggesting you can expect an average of 24 years on the combos:
http://www.nam.org.uk/en/news/23C53AB1-15B6-4F44-A50E-5605C412C2B7.asp
That being the case, it makes every bit of sense to delay the onset of treatment until it is necessary.
I've talked to many people who have been HIV positive for over 20 years who were told that they were going to die when no drugs were available and many of them continued to live, Then another person told me that when HAART was available in 96' he was told by his doctor that it would only be effective for about 5 years and he has been on the same regimen for 10 years now and with an undetectable VL. Now there are telling us that we can expect to live 24 years on HAART but that is also not including the new drugs that are expected to come out in 5 to 10 years by then hopefully better and less toxic drugs will become available in the market which means that the number may increase to more years of life expectation. So my opinion is to not expect to live the number of years a study tells you or even experts in medicine tell you cause, plan to live more because better drugs will come about.
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When I was on meds, taking them wasn't a big deal. But now that I've been off meds for a while, I'm not in any rush to get back on them. I just can't be bothered with taking meds.
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Thanks to everyone for the thoughtful responses. It is so refreshing to see a thread that doesn't get off the subject and have people getting mad at one another. I am now better able to understand what people who have cd4 counts in the 300's are dealing with.
Unfortunately, the vast majority of med stories I run across are people complaining and comparing side effects.
This is true. I doubt a thread titled "Started Reyataz, Truvada & Norvir today and things are great" would get many responses other than the "good for you" type. I think many people, myself included, find themselves looking at the worst that can happen in various situations (understand I am speaking of many things not just med side effects) rather than the positive scenarios. As has been stated in several posts everyone reacts differently to their combo. However maybe some of us who haven't had a bad experience should share our stories more often and offer more reassurance.
I really like the way Queen and others view meds as a way of helping their bodies out in fighting the virus.
Woods
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I think it is too easy to for many here to think that how it plays out for them, on the battle with HIV is the same- I too am lucky but I am chained to a bottle of pills that one day will cease to work. I had dealt with severe versions of the rash and here 4 years on am still having bizarre dreams and disruptive sleep patterns.
Yes it is better than dying but I don't think anyone should be resting on the laurels. Not everyone is lucky enough to have the one a day routine, we should not forget that. Not everyone one I know with HIV has the same regimen and many I know don't even post here.
And besides the meds there is the monthly routine of having to pick them up, making sure you don't run out .
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Interesting to browse this thread and to see how the medical aspects of meds are seized upon, not the psychological aspect of starting meds. Having been on a number of HAART combos between 6/98 and 10/05, I can look back and validate the words I often share with newbies to HIV and the world of meds: popping the pills makes the presence of HIV in one's life all the more real and inescapeable. During the last sixteen months of being off meds, except for when I've been actively engaged as a research subject and around quarterly lab appointments, it's been incredibly easy to forget that I have HIV--and that bothers me sometimes. Mind you, when I was on meds I didn't dwell on having HIV and being resigned to a better life through chemistry, except when my body hair fell out 4 months into Crixivan or I got the Viracept squirts, but I had twice-daily reminder to keep me present in the fight.
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However maybe some of us who haven't had a bad experience should share our stories more often and offer more reassurance.
I really like the way Queen and others view meds as a way of helping their bodies out in fighting the virus.
Woods
Well I guess this is my cue then....
After being diagnosed with HIV one of the things I really wanted was to at least have 2 years before I ever had to take any of the anti virals. Why? Because of the horror stories mainly. I was one of those people who could barely handle Amoxicillan, so in my mind I would be another horror story when it came to taking any of the medications to deal with HIV. When my viral load hit an all time high of 234,000 I was given the option to start by my doctor... well actually she suggested it, but as long as she told me I still had room to wait I was.. See my Cd4's were still hovering in the 400-600 range, so of course out of fear I chose to wait.
In a matter of months my Cd4's crept down to that "You need to start" number of 300, but my viral load was dropping also. I figured I could hold out longer and really foolishly put the whole thing in the back of my mind. I got caught up in the whole fiasco of selling my home and moving to another area. I bought another house went through a few probelms with legal issues and by the time I got back to dealing with HIV six months had passed since my last visit. When I did finally make it back to the doctor I was down to 120lbs and feeling very weak most of the day. I had an ache in my chest and it seemed like every joint in my body hurt.
Of course I figured what the labs would be and was not too suprised when my doctor told me my CD4's were at 137. This time there were no options and not only was I given a script for Atripla, but also one for bactrim.
Like Queen said I knew this was going to help me feel better, however I must admit this did little to ease my apprehension on popping that first pill. I was scared shitless.
I was one of the fortunate ones though... A little grogginess after taking the meds during the first week is all I experienced. My immune system has bounced back and I have added about 30 lbs.
Now I must admit I am suffering from some depression, but I have my whole life and it is no worse than it ever was.
The one thing I am experiencing now is a problem with my liver function. My doctor is not so sure this is caused by the Atripla. I have been told to stop taking my bactrim and Ibuprophen for my knee pain to see if my liver function will go back to normal and hopefully it will. I was tested for Hep C today becaue they want to rule that out... I just hope the labs I did today will show improvement because I just want to stick to what has been working, which is the Atripla.
Thomas
I'm now more confused. Your first post said you were diag. 10 years ago and this one says 2. Did I miss something?
She was diagnosed with diabetes 2 years ago I think is what she means... 10 years ago with HIV.
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My case worker told me to stay away from websites where people complain about meds because it is only to make me crazy. When I told her of all the things I have read when people take meds she told me that most people who will post on the side effects and treatment questions are people who are suffering from the side effects and most people who are doing well on meds wouldn't really wouldn't have much to say because the side effects are minimal. She had a good point, why would someone going through minimal side effects write good things in this sections. She did warn me that in the beginning it will be a big deal for my body but eventually it will adjust. The case manager had a brother who died in 95' of heart disease who happened to be poz as well. She said that he didn;'t die of HIV but he did died of heart disease because it was a family illness he got. I also compare life without meds hummm I would proabably have a year or two to live with my CD4 counts or an estimated 24 year average life span with meds.. Hmmmm which one do I choose?
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In answer to your question Wesley...I started out on Truvada and Sustiva. After taking Bextra ( a non narcotic pain killer)
which they prescribed for a cracked rib and to get me off narcotic pain killers, I contracted Steven Johnson's Syndrome...
a rare and sometimes fatal chemical reaction to medication. To understand it...just imagine yourself being microwaved cooked
inside and out. I wasn't suppose to survive....they told David's mother (whom they mistook for my mother) that I wouldn't
live out the week....of course I surprised them did I. I lost all my toe nails and finger nails...my tongue and the inside of my
mouth peeled....as did my hands, feet, arms and legs but mostly my trunk...my chest and my back. Ordinarily they transfer you
to a burn unit but Gulfport Memorial Hospital didn't have a burn unit.... Now once you've contracted SJS....you're three or four
times more likely to contract it again....and with that in mind I chose not to return to my med's.....
A few months ago my numbers dropped CD4:200/VL 100,000+ and my doctor pretty much insisted it was time to start
the meds again. We both agreed that Sustiva was not an option ....so I'm currently taking Truvada/ Noivir / Rayatez....with
Lori tab 10's for pain...Soma...muscle relaxers....and when needed for depression....ativan I refuse to take anti-depressants on
a daily basis... Everytime I take my meds I wonder "will I contract SJS again?" believe me if you've ever been thru it....you don't
think you'll survive it again and when you die from SJS....its usually because your brain is literally cooking...so imagine what thoughts
and outrageous imaginings one might have....its terrifying....more so than dying of AIDS. And I know because I watched David die
everyday for seven months while he was in hospice. I know this more than answers your question but I wanted you and others to
see the larger picture insofar as med's and I are concerned.
David,
This scared the shit out of me. Just prior to my HIV diagnosis I was given a prescription and had a horrible reaction which several felt was the beginning of SJS. Now, I actually think I was going through that seroconversion at that exact time and that drug just amplified the whole mess. I quit taking the med w/in a week and a half, but took me almost a month to completely recover. Nothing like your story, but I am definitely gun shy on the whole drug issue after my own mini ordeal.
I wanted to thank the rest of you for sharing your experiences and clarifying some of your own views.
I'm still paranoid I'll be the one who has all the horrible symptoms. There are those extreme cases which catch my attention and I think to me that wouldn't be worth living, not with all that.
Wesley
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I was told I had no option but to start something (it was '94, and my cd4 was 79, ratio 4%), and I was fortunate to qualify for a crixivan/azt clinical trial.
I had seen enough death at that point that popping a few pills 3x a day seemed like a very small price to pay for a little bit of hope.
For that first year or so, I had no idea if I was taking both meds or a placebo, but my cd4 increased ever-so-slowly, and I felt good, so I tried not to think about it too much. In the end, it turned out I was one of the lucky 1/3 of the trial participants who was actually receiving both medications.
It was probably 5 years later that I noticed the effects of lipodystrophy. I caught it early, and after a very brief switch to Norvir (which my body didn't tolerate at all), I was able to switch to Sustiva, and I'm on Sustiva/Combivir to this day. The lipodystrophy stopped progressing as soon as I stopped the PI's.
The meds have worked well for me. My last labs were the best I have ever had (cd4 616, ratio 26%), and aside from the lipodystrophy, I've been fortunate to have very few side effects.
That said...I have problems with psoriasis, rheumatoid arthritis, psoriatic arthritis, dupuytren's contracture in my left hand, and peripheral neuropathy. I can't say for certain, but I'm pretty sure all of these conditions (except the neuropathy) are related to immune system reconstitution syndrome. The neuropathy could be either HIV or AZT-related. (I'm on Lyrica for the neuropathy now, and it's working well.) I had no sign of any of these conditions until my CD4's and percentage had increased substantially, and I was well out of the "danger zone". As my immune system has gotten stronger, these conditions have gotten worse.
I agree with Boo that "the only person who can decide when to go on meds is you", particularly since compliance is so important once you start, but I also think it's very important to start meds before your immune system is critically compromised. I certainly would have (had I the option).
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Just to veer off topic for a smidge.... Alisen, darling whatEVER are you doing to that poor monkey in your avatar?
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Just to veer off topic for a smidge.... Alisen, darling whatEVER are you doing to that poor monkey in your avatar?
ACinKC I am fairly new to this forum. Just want to say that whoever you are, you are a riot! Poor Alisen! ha! ha! ha! ha! ha!
I needed a good, hard laugh to shake these winter blues away. :D
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ACinKC I am fairly new to this forum. Just want to say that whoever you are, you are a riot! Poor Alisen! ha! ha! ha! ha! ha!
I needed a good, hard laugh to shake these winter blues away. :D
Yea AC is a real riot, he brightens up my day sometimes just by being himself. I love guys with ADHD, they have no clue sometimes how funny they are. There are many people here you will enjoy reading their response to. I am fairly new here as well and love it here. This is like part of my home now. Welcome
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Interesting point, and of course you're right; we don't have any choice. But what about those of us who are told we need meds and we have to take them, but can't afford them? I find time to worry about that! I'm sick of people in the US and UK acting like the cost problem is only in Africa! People die every day in this country because they can't get their meds.
The statistics are skewed because you never see on any kind of study "number of patients who died as a result of not being able to afford meds". They just classify it as an adherence problem and blame the patient. I just lost my adap coverage and can't afford my meds so I'm out of patience today.
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I, like many on here, was scared to start treatments. Everything that it meant. No, it wouldn't change the fact that I was indeed HIV positive, but it would mean that I was now on medication, probably for life, and except for the occasional antibiotic or pain pill in my life, I had never been a "patient".
I decided, along with my DR, to start treatment early. I had only been infected, by my estimates, about 7 months. My Viral load was in th 65,000 range, and my CD4 was hovering around 500.
That was back in october. I obsessed over every pill. Took them diligently. It reminded me that I was HIV positve. It reminded me that I was something that most other people were not.
SLowly, that began to fade. I don't know at what point. Heck, I haven't even been on this board for a couple months, whereas I WAS on here every day at one point. It (the disease) ruled my life.
No longer does it. My last labs showed undetectible virus (<50), and CD4 of around 650. So I guess I am doing pretty good. Do I feel great? No. I am glad to be alive. I got REALLY pissed today when I got home and realized the pharmacy had screwed up and gave me Sistuva 200mg capsules, rather than my prescription dose of 600mg pills. They apologized after I ripped them a new one, and gave me back my $30 co-pay. I was really upset and expainled that I could develope drug resistance at that dose.
Anyhow, like I said, I TRY really hard anymore not to obsess about it. I do get depressed, and feel tired much of the time. It is difficult to get going, especially with it having been so cold out around here. Hopefully the spring will see a goodbye to the winter blues. I can't wait. I need to, and desperatly want to get into the gym.
Glad to be back on here.
~Biz
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Wow! So much information in this thread and so many differing views. I guess it really does show you how much of a personal decision starting meds it.
Wesley, I started on sustiva and epzicom. I was in a double blinded study so initially I didn't know what I was on. When I stopped the meds due to myalgia and they wanted to restart, I refused to remain in the study unless I knew exactly what I was on. I could have been on truvada. But I knew that restarting epzicom (because of the abacavir) could be dangerous. You talk about scared... I was scared at that point. But the doctor agreed without any dissention and they unblinded the study. They switched out the abacavir for videx EC and so for the past 9 months I've been on sustiva, epivir, and Videx EC. After restarting the meds I have had no real isues to speak of. And those two rough weeks are nothing but a distant memory now. I think the lesson I learned in all of this was not to be afraid of the meds. Yes, I had a short "bad experience." But I had educated myself before starting meds and I had selected a very good doctor. During those few days when things were roughest I was in daily contact with my doctor. He would even call to see how I was doing. But you know, they changed my hypertension medication just before going on the HIV meds and I had more of an overal issue with that change than going on the HIV meds. I actually had such a reaction to the new hypertension med that I had to stop it and go back to my original one. So nothing is a sure thing. But the good news is that there are so many combos that they can find one that works and is tolerable in almost all cases, particularly if you are starting out with a new first line regimine. Ironically, the Videx EC that I'm on is one of the older meds and is known for some real issues with some people. Pancreatitis and perpheral neuropathy are two issues that crop up with some. But I've had no problems at all. I know what to watch for and if I ever have any of the symptoms, I know to call the doctor and get things changed proto.
In reference to the 24 years expectancy after starting meds, that wasn't just with individuals starting new first line regimines today. That included a number of individuals who suffered through some of the early drugs. Another recent study mentioned something over 30 years in terms of current life expectancy and talked about that increasing as new drugs come on the market. Many experts today say that for individuals starting HAART, if they start before significant immune system damage is done, they can count on a normal or near normal life expectancy. My doctor told me that postponing starting treatment wouldn't really gain me anything. He said that if I started HAART and was compliant and took care of myself that I would most likely die from something unrelated to HIV. Of course, I'm over 40 now so I picked this thing up a little later in life.
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Hey W.
I think that it is easy to say "what's the big deal?" when you have had a good experience with meds. However there are many people on this website who have had a hard time with them. Deciding to take meds is definitely not a light matter because for many once they start it is a lifelong commitment.
But then I also recall if I am correct that you have not known anyone who has suffered through this disease, and that despite your age, the whole misery of death before HAART is a very foreign thing for you.
I commend you for starting this thread to get a better understanding, but starting meds is a big deal. I started them a month ago, and I thought things were going alright with minor side effects. Until this week-end. I got three horrible panic attacks. I literally wanted to crawl out of my skin and jump out the window. I live on the third floor so with my luck I would just have ended up paralyzed. But on a serious note. I was ready to check into the E.R. Guess what, this is a side effect of the meds I am on. So I really have to watch what I eat, when I eat it, how much of it I eat...
On the other hand I seem to be doing well on the meds as far as my labs go. However the threat of another panic attack is real. I thought people were overreacting when they talked of panic attacks, now I know differently. I had never had a panic attack in my life.
The point I am getting to is that as patients, we have to keep insisting on research. Drugs must be found with less and less side effects, until the magical words are heard that a true cure has been found for this awful disease. If we just keep taking the pills without noting that there are side effects, and the day to day struggle of taking these ultimately toxic concoctions, nothing to improve our lives will be done.
Rob
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you have a very interesting point of view, but I fear meds for the many that died from AZT. Luckily the meds today are better researched and tested.
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Darn RED, your post made my Survivor Guilt kick in, as I was one of the lucky ones who survived that nasty AZT! I know what you mean though :)
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you have a very interesting point of view, but I fear meds for the many that died from AZT. Luckily the meds today are better researched and tested.
I took azt for 10 years without major problems. I think your fear comes from a lack of knowledge.
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Rob,
You make a very good point, actually, a couple of them. I know I have been very lucky to last nearly 11 years on some of the meds I take - including the much-maligned AZT - without much in the way of side effects.
That said, it is critical for us, as people living with the bug and the drugs to fight the bug, to let the medical profession know when things happen.
The other side of that coin, and perhaps why I have a different view of the meds, is the other point you made regarding the pre-cocktail era.
Back in 1995, if my doc told me that dipping Lawrence Welk records in battery acid and sticking them up my butt like a suppository would help, I probably would have tried it.
No matter how scared people are of the meds, I don't know that it can be compared to the panic people felt before there were any.
People had their blood drained, heated to kill the virus and then put back into their bodies. Others turned to Chinese herbal medicine, accupuncture, alpha interferon, mega doses of vitamins and minerals, spirulina cleansing drinks, well, you get the idea.
Much of the above must sound insane to people today. But, back in those days, any hope was better than no hope.
So, while I understand some people have had a rough time with the meds and are, therefore, a bit more hesitant, I just don't understand the meds phobia some who have never taken them have.
I guess it can be chalked up to having different life experiences.
Oh, and by the way Jeff, I am very happy you survived those nasty AZT days. My doc still carries one of the pill boxes from back then, but the alarm no longer works.
HUGS,
Mark
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I took azt for 10 years without major problems. I think your fear comes from a lack of knowledge.
Joe, I think you hit it right on the head. Fear comes from a lack of knowledge.
When I first found out I was headed for meds fast (less than 3 months after diagnosis) I was scared big time. I didn't understand. I did lots of reading. Then I was "invited" to join a study. I ready all of the potential side effects and I thought the virus has to be better than this. This stuff looks like it will kill you. Then I talked with a respected doctor who had a better grasp of things than I did. I found out that even though there probably will be some side effects initially, they should be short lived or the meds can be changed. Knowledge made my fear dissipate. And when I did have some early issue, knowledge once again came to the rescue.
BTW, I lost my best friend and first BF from high school to aids because there was no AZT. He never had a chance. Glad you you got the chance!
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For me, it is a big deal taking meds. It's what I do to keep this virus in check. It's what I do to keep those nasty OI's away. That is a big deal. My CD4's were 285 @ 22%. I shouldn't have gotten sick, but I did. A week in the hospital with PCP and feeling bad for months before ("it's just a cold" I told myself) was all it took to convince me to start meds. Actually, I was planning on starting anyway, but the meds just sped things up by a week. It's a big deal 'cause, hopefully, I won't be getting sick any time soon. Like Queen, I was looking forward to starting treatment.
Sometimes I think we'd be better off not knowing what the possible side effects are prior to taking the meds. The dread and fear of the meds itself isn't healthy. I wonder how many of us don't take meds 'til the last minute, 'til we're really sick because of what we've read or heard about somebody else's bad reactions. Honestly, besides the funky dreams, I can't tell I'm taking an Atripla or an aspirin. I know I'm fortunate, but so are a lot of others. If one's viral load is consistently rising and one's CD4's are consistently dropping, honestly, what's the benefit to waiting a few more months 'til one hits some magic number under 300? The meds just make it that much easier to get back to a healthy range.
I'd have a really hard time sitting by watching a friend waste away from not taking meds, as others have mentioned above. I'll be damned if I'm going to sit around and watch it happen to me. Exercise, eating (mostly) well, cutting down on alcohol... trying to generally live a healthier live plus taking my meds is what I do for me.
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Wesley,
Thomas had it right... I have been poz 10 years this year and it has been 2 years for the diabetes. I should've been more clear.
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"Sometimes I think we'd be better off not knowing what the possible side effects are prior to taking the meds. The dread and fear of the meds itself isn't healthy."
I completely agree, David.
I put off starting meds from 1988 till 2002 when I became hijacked by the big V. Up till then I felt fine. I could see no good reason to pop pills when I saw no outward indication that I needed to. Sure I had bouts of shingles now and then, but I wasn't breaking out in KS or going down with PCP. I thought the doctor was nuts wanting to burden me with pills. Little did I know.
Daniel
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My decision was based upon the CD4 counts. I had read so much about the side effects of the meds that it literally scared me from starting them. The nurse finally told me to stay of the net and do some solid research which is how I stumbled across "The Body" and this site. After learning so much I decided it was time to take meds since I didn't want to die yet.
My first meds were Sustiva / Epzicom which I started the day before Thanksgiving. Luckily I had not made any plans and suffered through the first couple of days of "getting used" to the meds. Surprisingly, the effects were unlike the horror stories you continue to read about so I was pleased. Unfortunately, I developed a reaction to the Abacavir and ended up in the hospital five days later thanks to what we thought was the Bactrim at the time.
I am now on Truvada and it's been an easy ride. Five weeks later, everything is under control with a VL that is <50. I know it's a personal decision since I had to do this for me. I didn't have a decent support system here and have been dealing with this on my own. The only people who even know about me being positive are my health care providers and my next door neighbors. The routine right now is now different for me since I have to take meds for blood pressure and for Cholesterol. Add to the mix, I am a Type 1 diabetic for the past 25 years, this is just another pill to pop for the time being.
I still have fears of longterm side effects but am hopeful we'll get a new round of meds appearing this year giving us all more options. In the meanwhile, I admire each of you and have learned so much from all.
Thanks for sharing.
Tom
I
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Let's go back to 1986. The doctors were all telling 'us' to get on AZT or they wouldn't deal with us (in NYC). The only numbers we had were cd4's and cd8's and, from what we thought we knew then, 250 was the point of starting meds. So my logic was to wait until my numbers got there: why take something before you absolutely need to do so? Why, in my thinking, waste what meds could do for me until I absolutely needed them? And, in my case, it paid off because AZT alone did not work for most people and they died. I was able to stall until the cocktail arrived. Pure luck and stubborness.
What I learned from the decade of dying is to ask for only one thing of someone: that he or she thinks about what he or she is or is not doing (regarding meds, which ones, which 'alternatives'). Respect a person for making his or her choices. It's very rough to ask. We should make sure that our personal opinion gets into the mix, but not to the point that the person is hearing everyone else's and not his or her own thoughts. It's true with people who have cancer, the choice to start a treatment or not, the choice between chemo and radiation.
Yes, it can and will be argued that now we know much more, have better drugs, most people do well on them. But we have to still respect the concerns of others, that they might be the minority to have side effects, that their particular side effects would force them to change how they live, that we, today, seem to see things in a good light, but still can't absolutely project the future for the person starting drugs today 30, 40, 50 years of taking drugs later. And if you are 20 something today, that's still a problem. I suspect, Woods, that some of this answers what the big (or small) deal is with taking meds. Best, Win
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Darn RED, your post made my Survivor Guilt kick in, as I was one of the lucky ones who survived that nasty AZT! I know what you mean though :)
At the risk of going OT..... Survivors' Angst is highly over-rated, at least for me. Through the arrogance, ignorance and fear of young adulthood, my bugs and I managed to duck the brutally high doses of AZT in the early years; and my immune system got me to the age of PIs before the truth of my serostatus was unmasked. Throughout those years, dozens of wonderful HIV+ men and women entered my life and imparted innumerable lessons about living with the disease. So, when I had to deal with my HIV in 1998, I was armed with all of that collective wisdom and attitude--like having the balls to stop Crixivan on my own four months later when my body hair fell out--and my primary physician at the time never doubted my capacity for staying involved in my care and challenging him and others about their notions of appropriate care. The ongoing stint off meds with great numbers just makes me more happy that the two horny 19 year-olds who became my parents passed on some good genes.
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I think that it is easy to say "what's the big deal?" when you have had a good experience with meds. However there are many people on this website who have had a hard time with them. Deciding to take meds is definitely not a light matter because for many once they start it is a lifelong commitment.
But then I also recall if I am correct that you have not known anyone who has suffered through this disease, and that despite your age, the whole misery of death before HAART is a very foreign thing for you.
Rob,
I have reviewed every post I have made and no where have I indicated who I have known that may have had AIDS or any experiences I may have had prior to HAART. Your assumption is wrong and I find very condescending in its tone. For your information in the late 80's I was a Hospice volunteer in a Kentucky community of about 25,000. The agency could not find volunteers to work with AIDS patients and so I volunteered. With one patient my visits went from enjoyable conversation and TV watching to me just sitting by his bed while he just lie there in a shell of who he once was. When he died there were about 10 people at the funeral, 3 of us were from hospice. So the misery is not foreign to me.
For some taking meds is a big deal, some view it as an inconvenient necessity and others it is just part of life, no big deal. There is no right way for one to feel regarding meds. In my posts in this thread I have been very careful to ask questions that would not make someone feel that their worry or stress about starting or taking meds were ridiculous or unjustified feelings. I have tried to learn and be respectful of others, I only wish you would have been in your response directed to me.
Woods
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For me it was an admission that I had AIDS. I never liked to actually come out and say it. I would always find ways to skirt the issue and call "it" my sickness or disease or even problem. never saying I HAVE AIDS. By taking pills its like an admission that something IS wrong with me.
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I am going to keep injecting this when I see it because, for whatever reason, the concept of a forum, of a place to post opinions, get into discussions, etc., makes these shifts into the personal and, speaking for myself, I don't want to lose more posters here because of it. When you really, really have this urge to speak to someone directly, please use p.m. Use it to say something nice, as in thanking someone directly for starting a thread, for making a post which has made you stop and think. If you have to, use it as well to raise a carefully worded question, as in 'I read your post and wondered if you could give us via a post some more perspective so that we could understand where it was coming from?' Or generalise things, post, 'I think that this is a great thread,' or 'I wonder if...' without addressing someone directly. We want and need to hear what each of us is thinking about things, but we are less likely to hear each voice if each time it is raised it is seemingly shot down. Thanks, Win
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I'm as guilty if not more for derailing topics Win. I kind of stopped reading this one cause personally I felt many of the stories were just making me freak out more ;)
For those who think this is just some ancient history, tell that to the loved ones I've met of the 19 and 25 yr olds died last year.
I'm sorry for what happened in the past, but I can't personally change it or relate to it; however, I don't think that discounts my own experiences or views either. I also don't think that everything is just great now, better I guess. I don't have the historical perspective, but I'm attempting to learn.
There seems to be a lot of disconnect here and I'm sure I am equally part of it.
I think we can all agree that taking meds is a big deal.
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I think we can all agree that taking meds is a big deal.
My intent for this thread was to better help me understand why people stress and dread starting meds. To which I do have a better understanding.
Thanks to the responses I am fully aware of the struggles and worries many have in beginning their meds. But to make a statement that says ....we all can agree.... I feel in a way discounts the fact that for some starting meds isn't a big deal. It only points out that while we all might be HIV+ we each deal with the virus in completely different ways.
Woods
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Just to veer off topic for a smidge.... Alisen, darling whatEVER are you doing to that poor monkey in your avatar?
Why trying to get your attention cowboy!
Did you think only females go ape over hairy astronauts? Btw i love it when yuo call me darling :-*
mjmel
Poor Alisen!
Don't you mean poor monkey?
Johnny
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Woods: You're an HIV newbie which makes your question all the more relevant for others.
There are several different factors behind making a "big deal about taking meds". They aren't all at play all the time. Here they are in no particular order:
1) In the 80s patients were treated improperly, causing massive side-effects, and then death (huge prescribed doses of AZT comes to mind). Yeah, maybe the treatment killed them rather than late-stage disease. A source of fear, and a sad learning curve.
2) Affluent societies breed more crybabies. Treatment adherence in Sub-Saharan Africa is probably greater, than say, in California. Whining while being adherent does little harm unless you're enrolled in Charm School. Good Patients speak up and take responsibility for treatment. Lying to a doctor does a patient little good.
2) The newer combos actually give people :o worse side effects due to more/different drugs involved then 2 (my old treatment) or 3 drugs only. So a lot of complaints are not exaggerated. These are the current treatments of choice. Some side effects diminish--but not always for everyone--and chronic side effects may be health-threatening.
3) Having the runs, among other side effects, while working, is not just painful and embarrassing, but threatens medical privacy. Staying home when possible, is preferable to any workplace nightmare. Not everyone can afford that.
4) It's often not just about "delaying treatment 2-3 mos". as someone wrote (not faulting their example). I have been treated only 5 of 16+ years of infection at the suggestion of my Specialist. Non-treatment, like treatment, is a careful medical decision, and should never be determined by and exaggerated factor of side effects. I don't want to discourage anyone from treatment for fickle or secondary reasons.
5) Many physicians do a poor job in tackling side-effects (like watching contraindications when treating OIs), and so the patients on this Site do a damn good job of sharing info on these matters (they really don't strike me as crybabies, for the most part) with one another. As long as the info is accurate I don't care whether folks whine or "bite the bullet."
6) Does this discussion scare some away from treatment? Probably. The antidote to misunderstood education is probably more education. Most folks reading here now are non-members (which is fine) so we'll never really know who dropped in and left when.
So, those are my opinions. A mish-mash of observations on an important subject that can cause misunderstandings and poor or half-hearted decisions. Thanks for your crystal-clear question. I didn't find it flippant. 8) -megasept
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Woods,
I am sorry if I have mistaken you for someone else. The guy I am referring to is someone from Texas,or some place like that, who belongs to some gay friendly church... who I had an exchange with about the "old days of HIV." If it was not you, although I remember your picture being associated with it before you changed it. You told me that you had basically (and I'm sure it was you) had had a sheltered existence in your rural town, and said that you could not honestly identify with me, because the era of peole dying of HIV never became personal to you. It all started with an argument on how much homo hating churches have contributed to the AIDS epidemic, which you were not in agreement with. I am sorry to say we are still on different sides of the issue. I think your posts on meds are anything but neutral, and I was simply pointing out that people can have bad experiences with drugs, even today. And that we must continue to make sure more research goes on to find less toxic alternatives. That's all.
Starting meds is scarier for some than others, and it doesn't hurt to acknowledge it, as this is the first step to successfully deal with the ordeal. Although, if we believed all the side effects listed would happen to us, we would never take them, knowledge of the side effects to me is power. I would rather know what to expect. Because I am in the minority of people who end up with allergies to meds, it is best for me to be prepared, and know how to handle the possibilities. This info really helped me this week-end.
rob
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good topic..
It wasn't the starting the meds i feared.. it was what it did to me once i got there.. i guess I'm weird, i didn't get the huge CD4 count, i am still below 200 after 3 years... I have vomit, shit, and the feeling of being wiped out every .. day... I'm happy for you.. and I wish you well!!
lisbeth
ps... poz in 86 no meds till 2003
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The other side of that coin, and perhaps why I have a different view of the meds, is the other point you made regarding the pre-cocktail era.
Back in 1995, if my doc told me that dipping Lawrence Welk records in battery acid and sticking them up my butt like a suppository would help, I probably would have tried it.
No matter how scared people are of the meds, I don't know that it can be compared to the panic people felt before there were any.
People had their blood drained, heated to kill the virus and then put back into their bodies. Others turned to Chinese herbal medicine, accupuncture, alpha interferon, mega doses of vitamins and minerals, spirulina cleansing drinks, well, you get the idea.
Much of the above must sound insane to people today. But, back in those days, any hope was better than no hope.
So, while I understand some people have had a rough time with the meds and are, therefore, a bit more hesitant, I just don't understand the meds phobia some who have never taken them have.
I guess it can be chalked up to having different life experiences.
Mark, you did a great job of capturing my feelings on this whole issue.
I personally don't understand all the angst about taking a few pills, because I lived through those days you described. We would have done anything (and did!).
As you say, it's different life experiences that make for so many different viewpoints.
Hugs,
Alan
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I think this has more to do with how much "fear" or "anxiety" one has about starting or adhering that defines it as "big deal" or not.
From my personal perspective I started about 6 years ago and I had a combo that gave me a few sides (mainly an hour of nausea) and I learned to manage it with diet. I've since switched to an easier combo and the sides are non-existent. I had some fear, but I had no choice at the time and while I would say starting was a "big deal," my daily regiment today is not.
I do agree with what one commenter was told above by his doctor about reading too much about sides when first starting. I would NEVER tell anyone newly diagnosed with little understanding of HIV and the meds to read threads about sides and scare the bejeezus out of them. Without the ability to decipher someone who may be highly treatement experienced - or just plain against taking the meds - or bad with adherence - or many other person-specific scenarios - you could think that what is happening to them will automatically happen to you and freak ya out.
What happens will happen regardless, and fear will just make things worse.
Fact of the matter sides and meds are a LOT better than they were in the past. Not perfect, but if you gotta take the plunge be vigilant and not naive about it, but also be realistic and listen to your doctor.
We all deal in our own ways...