POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: cappuccino on March 23, 2014, 01:04:50 pm
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Hi guys, I am new to this forum and maybe my question has been answered elsewhere. I was diagnosed hiv+ in the summer of 2007. My CD count has almost always been fluctuating in the 400s and I am not on any meds. I live in the UK and am treated/monitored via the NHS.
At the start, doctors told me that I would not have to start any meds until my levels were lower than 400, averaging close to 350. One doctor told me that they knew of a patient who had was living without meds for over ten years already.
I moved city a couple of years ago and the doctors here keep encouraging me to start taking meds. They aren't putting any pressure on me, but it always comes up when I meet them: have you given any further thought to starting meds?
My instinct says that I shouldn't take any medicine or tablets unless I really need them, especially a long term regime. I know that I will need them and I have embraced that reality. The reason the doctors supply is quite vague: they think that maybe possibly I (or anyone else living without meds longterm) will be more susceptible to age related illnesses at an earlier than expected age. They think that I might be more susceptible to cancer etc. When I push them about this they always answer they don't really know if it is true or not.
I am inclined to not take medication for as long as I stay in the 400s.
Do any of you have any comments on that? Have you heard about the effect of living with hiv without taking meds (for not needing to) for many years?
Separately, I have developed very dry skin and most shower gels/shampoos make my face go red for a few hours, maybe a bit puffy. The doctor's suggested aqueous cream but recently it has also made my skin go red instantly. I sometimes wonder that if my immune system was healthier I would not have this problem - if I start taking meds and they become very effective, will I feel healthier than I am? That could be a positive reason for me to start taking them.
Thank you in advance.
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Hi Cap, welcome to the forums.
I've moved your thread into the Treatments Question forum as that is the more appropriate place for it.
First, I suggest you read the thread stickied at the top of the Treatment forum - Experts debate when to start HIV therapy (http://forums.poz.com/index.php?topic=51849.0) - and read the article linked to in the thread. It will give you a bit of perspective from both sides of the debate.
I'm in the UK as well and I go to Liverpool for my hiv care. I went without treatment for about fifteen years, but I do wish I had been able to start a year or two sooner than I did.
My numbers were fluctuating in the 300-500 range with the occasional foray over 500, and for that reason (going over 500) I had to fight a bit to start. I wanted to start because I had been feeling increasingly sick and tired all the time and got sick and tired of feeling that way. I do feel better now I'm on meds, but it wasn't a cure-all by any means.
I do not by any means regret most of the years I went without meds, but as I stated above, I do wish I'd been able to start a year or two before I did. I'll be on meds (Prezista, Norvir and Truvada) for two years this coming July.
Thing is though, I was diagnosed a few years earlier than you were and the meds that were available for first-line treatment then aren't like the meds available today. There have been a LOT of improvements in the past few years.
Welcome hugs,
Ann
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Thanks Ann, I read that article just now. I still am unsure what to do!
Could you explain a little better, if only briefly, why you regretted not starting sooner, why only a couple of years sooner and not 17 years sooner?
Many thanks,
Cap
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Hi cappuccino.
You have had a good run without medication.
May I ask how your Viral Loads are, over these years?
Do you think you can elaborate why you don't want to start? I mean, what exactly are your concerns starting treatment?
Is it the absence of proof that it is beneficial? (Note that some countries have put the low limit to 500 CD4. Note also that some places doctors are perfectly willing, these days, to treat upon diagnosis, or as soon as the HIV+ says he/she is ready.. Hedging about continuing research that says there are probably benefits...)
Or is it something about taking this medicine? Any fears? if so of what?
Is it a matter of the inconvenience?
My guess is that your skin concerns could well improve on treatment, by the way.
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Thanks Ann, I read that article just now. I still am unsure what to do!
Could you explain a little better, if only briefly, why you regretted not starting sooner, why only a couple of years sooner and not 17 years sooner?
Many thanks,
Cap
For a start, while (with hindsight) I know I was infected in the spring of 1997, I wasn't diagnosed until February 2001. So for four years I didn't know I was poz.
My doctor, who is an hiv pharmacologist, said that with my numbers he wanted me to wait until better meds were out. At that time newly diagnosed people were being put on Sustiva and Combivir and I'm glad I didn't start then. I would refuse Sustiva point-blank if it were offered to me today, knowing what I know about it now, and I would also refuse Combivir as it includes AZT. Of course if I was in dire need of treatment, I'd take them, but only if they were the only things available.
I said I would have preferred to start a year or two earlier than I did for the simple reason that I had started having more "aidsy" days than not. Feeling generally icky and constantly tired. I was also picking up more than my fair share of ordinary bugs that were going around the community and recovery from them was taking longer than it should have.
At the end of the day, I know my own body and I knew my body was trying to tell me it was really starting to need help with controlling the virus, despite what my numbers said.
My numbers history up until I started treatment... (note: where my VL is listed as 00,000 the VL hadn't been run that day.)
2001-02-22 VL 80,700 CD4 490
2001-03-30 VL 21,000 CD4 997 32%
2001-05-29 VL 43,700 CD4 440
2001-07-10 VL 43,700 CD4 350
2001-08-07 VL 25,000 CD4 480
2001-08-21 VL 00,000 CD4 660
2001-10-08 VL 91,100 CD4 470
2001-12-04 VL 96,200 CD4 620
2002-02-04 VL 21,000 CD4 620
2002-04-11 VL 00,000 CD4 530 26% Started hep C treatment
2002-07-10 VL 00,000 CD4 460 27%
2002-09-11 VL 00,000 CD4 530 26%
2002-10-09 VL 30,300 CD4 322 31%
2003-01-08 VL 17,800 CD4 363 23%
2003-04-02 VL 06,940 CD4 410 Ended hep C treatment
2003-07-07 VL 40,700 CD4 474
2004-01-28 VL 29,900 CD4 518 28%
2004-03-?? VL 07,370 CD4 281 23% had shingles
2004-06-01 VL 07,740 CD4 460 27%
2004-08-30 VL 13,000 CD4 568 26%
2004-11-23 VL 11,000 CD4 645 28%
2005-02-15 VL 03,350 CD4 532 27%
2005-03-29 VL 00,000 CD4 715 28%
2005-06-21 VL 06,580 CD4 660 26%
2005-08-02 VL 00,000 CD4 732 28%
2005-10-12 VL 00,000 CD4 320 25% minor op previous day
2005-11-08 VL 10,200 CD4 786 28%
2006-01-31 VL 12,500 CD4 787 32%
2006-04-25 VL 11,800 CD4 628 29%
2006-07-18 VL 18,400 CD4 550 26%
2006-10-17 VL 14,500 CD4 447 26%
2007-01-16 VL 12,600 CD4 567 26%
2007-04-10 VL 07,610 CD4 441 26%
2007-07-03 VL 05,630 CD4 411 25%
2007-09-25 VL 16,700 CD4 525 27%
2007-12-18 VL 12,900 CD4 299 22%
2008-02-05 VL 13,700 CD4 489 19%
2008-04-29 VL 10,700 CD4 433 26%
2008-07-22 VL 10,200 CD4 314 27%
2008-11-04 VL 03,050 CD4 470 29%
2009-01-27 VL 06,700 CD4 459 25%
2009-04-21 VL 07,390 CD4 399 25%
2009-07-21 VL 35,000 CD4 561 32% New VL assay used
2009-11-03 VL 39,900 CD4 576 26%
2010-02-09 VL 00,000 CD4 392 29%
2010-05-18 VL 20,500 CD4 368 26%
2010-10-12 VL 08,000 CD4 576 28%
2011-01-18 VL 27,500 CD4 332 20%
2011-04-20 VL 38,700 CD4 581 28%
2011-07-?? VL 41,000 CD4 471 24%
2012-02-21 VL 33,800 CD4 340 24%
2012-05-15 VL 30,900 CD4 491 22%
2012-07-11 Started meds
2012-08-21 VL 00,414 CD4 674 26%
2012-10-23 VL 00,065 CD4 776 33%
2013-01-15 VL UD CD4 1050 34%
2013-04-16 VL UD CD4 997 33%
2013-08-13 VL UD CD4 - for some reason I didn't write my CD4 down.
2013-12-10 VL UD CD4 - I won't know these numbers until my next appointment on April 8th - and I'll have to get my CD4 result from last August too.
There was a big gap between appointment from July 2011 to Feb 2012 because I quit going to my appointments for a while. I got fed up asking to go on meds, only to be told that my numbers looked fine and I was stable. Neverfucking mind that I felt like shit most of the time. My missing appointments finally got their attention and they finally agreed to let me start.
I do feel much better than I was feeling back in 2010/11, but I still have issues. I have no idea exactly what causes what; having hep C for a couple decades (it pre-dated my hiv infection), having untreated hiv for so long, or just plain old getting old. I still do not regret not starting meds when I was first diagnosed in 2001, even if untreated hiv is a culprit in my woes. There's no doubt in my mind that I would not have been a good candidate for Sustiva and that alone is enough justification for me.
Your mileage may vary.
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Thanks Ann, those details give me a better picture. Unless I am mistaken you felt more susceptible to bugs and viruses and felt rundown more often and you put this down to a low immune.
I think that if I felt like that I would make the same decision.
Mecch, I don't know the exact figures - the Doctors don't usually mention them - they have told me that they are low enough to not worry. I reckon that they are around 25,000 give or take ten thousand.
The reason I don't want to take meds is because I don't feel ill and don't want to take medicine unless I really need to - for anything. A little part of that is the inconveniences that are associated with meds - possible side effects, changes to diet, worrying about forgetting to take them etc but the main reason is simple: I don't want to take medication unless I have to.
Regarding prevention of transmission to others, I don't take risks and always disclose.
The only reason I am considering it is because the Doctors keep asking - but they don't really supply a convincing reason to me. If they knew for sure that living with HIV for a long term without treatment tires the immune system and means that age related illnesses will be more common sooner etc then I would start.
Perhaps I am cynical also: a part of me believes that USA starts medication immediately because they want to prevent infections (not beneficial to the patient) and because it fuels the pharmaceutical industry. But that is besides the point maybe: I am looking for the negatives for not taking medication in the long term with a CD4 count averaging around 450. I am looking for a convincing reason.
Why should I?
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1) There is no big pharma conspiracy on the part of thousands upon thousands of doctors, who have millions of hours of experience treating their patients without cow-towing to pharma. Doctors are recommending treatment because in their experience, they think it is a good choice for their patients. The 500 recommendation, or early treatment, for instance, at diagnosis, is based on research.
2) You have an HIV infection and you need to fully embrace that eventually it will be treated with very good medicine.
3) We are going to assume that you are OK with treating at 350. But I do worry about this rationale "I don't feel il". Part of 1) above, is that ongoing active HIV infection may be doing damage even if the person feels well.
You do realise the repetitive, very sad story of the hundreds of thousands of people who are diagnosed with completely wiped out immune systems, "suddenly" very sick on their deathbeds, in fact, because they didn't feel sick.
And people who know they are HIV+ and wait and wait and wait, because they dont feel sick.
Not feeling sick isn't really at the top of the reasons not to treat an HIV infection.
So we will assume you are looking for a research based rationale. Or a partitioner's wisdom. There is research. And, as you say, there are doctors now who judge, in their expert opinion, you might start now.
I asked those questions out of my own experience on this forum, trying to dig out underlying resistance to treatment. Not saying you are being irrational, I was just checking... But please, keep this "I don't feel sick" rationale in check....
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It's been six years since you were diagnosed and these questions are still unanswered in your mind? Where have you been? You need to research your own disease. If you did you would see there is quite a lot of research supporting starting meds as soon as possible.
Your reasoning of "I don't feel sick" and "it's a pharma money making scheme" is terribly flawed and uneducated. Why haven't you learned about your life threatening illness in the past six years?
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If this wasn't 2014 with various different options for medicine you MIGHT think twice about taking meds.
But since meds work great and are basically free I feel you would be doing yourself a disservice to avoid them and believe in a conspiracy with pharmaceuticals.
Everyday you are not on meds you are another day into the virus working its way even further towards the final result we all know.
There is a reason doctors want you to take medicine for a life threatening virus sooner than later.
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I don't know the exact figures - the Doctors don't usually mention them - they have told me that they are low enough to not worry. I reckon that they are around 25,000 give or take ten thousand.
Maybe I'm the oddball here, but the numbers are the FIRST thing my ID Doc starts with after the perfunctory "Hello". It's the meat and potatoes of why you are there!
IMO - this should be step #1. Call up your ID Doc and ask for not your current status related to VL/CD4 but a print out of your entire history that he has. You should be able to determine just from looking at these numbers a trend and that would be an excellent step to beginning your education of your disease.
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do you really want to wait until you get sick? just to see what its like or something? it sucks. sucks bad. real bad. believe that. you have a better chance of being and staying healthier starting treatment sooner, and if you have access/afford to meds, i do not understand the rationale of waiting. so your cd4s are now hovering around a number that is ok (higher than i've ever had btw), but if/when they tank, it all goes south real quick. did i mention how bad it sucks? sucks man.
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Cap, in all honesty, if I were you and my CD4s were consistently in the 400s, I'd been poz for a few years (long enough to research the newer meds) and my doctors were offering treatment, I'd be biting their damn hands off. I'm talking about YOU, here and now in 2014, not me ten or so years ago.
When I was newly diagnosed they were just coming out of the "hit hard, hit early" years (1996-2001) after they'd finally figured out that a triple "cocktail", as they called it (I hate that term), would save lives. This was following years of doctors looking on helplessly as patient after patient died. They were giving people meds pretty much on diagnosis, like today.
As I told you earlier, my doctor is also an hiv pharmacologist (ie he does drug research) so he's very up on any new drugs in the pipeline. When I was newly diagnosed I practically begged him to let me start drugs - I wanted to feel like I was doing something about it all - but he said no and explained why. The (then) current drugs carried a lot of side effects but there were better drugs in the pipeline, and my numbers were good enough to wait for them.
The reason the "hit hard, hit early" mantra hit a brick wall was because of the side-effects. At that point it WAS better to wait than to risk some of the debilitating side effects. the cut off point back then when "hit hard" went by the wayside was 200.
The newer drugs do NOT have those debilitating side effects, so the pendulum has swung back around the other way.
In the UK we're not yet treating when a patient is consistently above 500 CD4s (unless there are other extenuating circumstances), but most doctors are urging a patient who is consistently UNDER 500 to start. That's where my numbers screwed me up - I kept popping back up over 500.
Aside from how different things were drug-wise in 2001 when I was diagnosed to when you were diagnosed just a few years later, you also must take into account that I was coinfected with hep C. My doctor wanted to treat the hep C first and get it out of the way before we started complicating things with other types of potent drugs.
I'm sorry if I'm not making total sense - I'm tired.
To sum up - quit dithering and just start already! There are good combos available for you, and other combos available if the first one isn't a good fit. You've had a good run of a few years without meds, now it's time to start before you come to regret it. End of.
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Hey Cap,
Folks have shared a number of reasons why starting meds is a good idea for you and I think you are missing the point about HIV meds. You say that you do not want to take any meds unless you really need them and I want to know why you don't think you need to preserve your immune system and health?
The whole point of treating HIV is to limit the damage the virus can do and to keep it suppressed for as long as possible. If you insist on waiting until your numbers are borderline, how much damage will you have sustained by waiting so long. I suspect that the reality of having to take drugs for the rest of your life, is of great concern to you, as evidenced by your attitude toward taking any drugs.
There is nothing wrong with being cautious, however, I think you are looking at reasons not to start treatment, when you should be looking at the benefits of starting treatment when your health dictates. In the greater scheme of things, starting HIV meds a few months early will mean little in terms of how long you will be taking them.
Starting them now though, may prevent your health from further decline and improve your quality of life. If nothing else, realize that living with HIV is a marathon, not a sprint and the goal is to be prepared for the long haul. Denying yourself the right medications to treat your infection, will never win you the race.
The goal to living with HIV is to attain a life where you can pursue your dreams. Meds play a very real role in maintaining your health, so your dreams can become reality.
Joe
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Just my personal perspective.
Before diagnosis, I noticed odd things like always feeling tired and getting random minor skin issues. Getting through a day became a major chore over the 3 months before diagnosis. I didn't know why at that time. For a previously very active guy in his thirties, that was pretty serious.
My first CD4's came back in the 220's, VL 40k. Then again, I starved myself when I had those labs. So, the CD4 could have really been a little higher. The starvation was due to a pretty bad depression episode at that time.
Once I started meds, subtle changes started happening. I healed faster from cuts, my skin issues became less, and I felt considerably less tired. Some fatigue from the meds and stomach issues, but that's about it.
Trying a new regimen with even less side effects now.
Bottom line: You do not EVER want to get to the point I did.
Why people must wait until they are practically in my shoes boggles me. Especially in this day and age. With newer meds with less side effects, too.
I would figuratively kill to have your numbers when I started meds.
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I don't know why you guys think hostility and calling me ignorant or stupid is in anyway helpful. I wont ask again on here, sorry but in not going to feed your righteousness.
to those that offered their own experiences, thank you. It has helped.
to be clear, health professionals have given me conflicting advice. That is why i asked you guys, because you have the experiences that doctors don't.
i wont wait until i am ill. That isn't going to happen. I am very accepting of the fact that i will be on meds all my life. I am thankful that i have that chance.
i don't know the research. I don't know the pros and cons. Doctors have been vague. I have enquired here because I DONT KNOW.
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Hi Cappuccino and welcome to the forums . Please read the positive comments you have been given in this thread and take them to heart, there is some excellent caring advice here and it would be a shame to let a negative post or two rob you of the opportunity to get and give the support you need .
Please do not let one posters insensitive comments ( Buginme ) keep you from participating on the forum, that would be a real shame .
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Aggreed!
This a nice place to hang out and share
Pls keep in touch
Hope this helps a bit
Eric.
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The last visit I made to the clinic my CD4 count was the highest it has been in a while - around 550, and the viral load was under 40,000.
I saw a different consultant by chance. He has been there a number of years and is the longest serving specialist in that clinic. He told me that the other doctor was a trainee doctor and that she was wrong in the information she had given me about starting meds soon.
He said that I should not take medication until my levels were around or close to 350. He told me that some professionals have different opinions about this but he thinks that had I began treatment already when I was diagnosed, I would have exhausted a couple of available treatments by now.
He told me to keep healthy, that the different illnesses I have are no different to the rest of the population - lots of people get bugs in the winter. My mild allergies are not related to my immune being weak, my drier skin could be anything: this has been finally sorted with a good emollient and I drink a lot more water. I had some impotence as well but I am treating this with a variety of means satisfactorily. He thinks that possibly my higher than expected cholesterol (still under 4 which is healthy) might contribute to that. He thinks the higher than expected cholesterol might be a factor of being positive.
I feel that the first doctor was trying to get me to start meds because of her own personal opinion or morality (that is a speculation), not because on my own health or medical needs at this moment.
The doctor told me that my life expectancy is 82.
I will one day need medication and I am so glad that I will have that opportunity, and I know that treatment is great, but I don't want to start meds until I really need to.
I hope that this might help others who may be in a smilier boat: get a second or third professional opinion.
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Hi cappucino :) where in UK are you?? I am in London :) started treatment last Tuesday.. Dr. said to me that I don't need it , but I was ready. As you- dry skin, some bruise make me very paranoid and I started- feel great! 0 side effects, life is great :) no skin problems any more. :) anyway txt me where are you in UK. L. X
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Perhaps I am cynical also: a part of me believes that USA starts medication immediately because they want to prevent infections (not beneficial to the patient)...
I also do not buy the BigPharma conspiracy, but, in my case, I know my Doc is working hard to get more funding for testing and prevention in order to reduce the 'community' viral load.
I fail to see how he could be such an advocate in the morning and not slightly biased pro meds in the afternoon.
He did not rush me into it
I went on meds because I was '20 when that shit came out and have lived throught he dark years.
Some modern day doctors may actually have never seen AIDS dying patients with their own eyes
He did not rush me into it, but beeing close to 50 at the time, I freaked out and went on meds
I do believe I would feel better without meds, but since I can not go back to the pre infection status
It took me years to understand the perspective of people, who like Ann, have differed treatment.
Now that I have talked to other doctors than mine, got various opinion, and stuff, I feel the NHS 'classical' recommendation to start when crossing the 350 line to be very reasonnable.
I think they should not be fetish about it though and should take age, feeling tired or aidsy, being over anxious or depressive under consideration
Eric
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but he thinks that had I began treatment already when I was diagnosed, I would have exhausted a couple of available treatments by now.
Have you given your doctor any reason to think you would not be adherent? (That you wouldn't take your meds every day without fail - as much as humanly possible.) Because that's the main reason a person would "exhaust" any med. Non-adherence leads to drug resistance, necessitating a change of meds.
My partner, who was diagnosed at the same time I was, HAD to go on meds right away back in 2001 (CD4s below 200.) He has NEVER developed resistance to any of his meds in all that time.
He has changed meds a bit - he swapped out Combivir for Truvada when Truvada became available - to get away from AZT, not because of resistance. Combivir is rarely used these days (at least in developed countries).
Then he swapped out Sustiva for Intelence about 18 months ago - to get away from the side effects of Sustiva, not because of resistance. In fact, if he had become resistant to Sustiva, he could not have switched to Intelence because of cross-resistance issues between the two.
He could go back on both Combivir and Sustiva if for some reason the meds he's now taking were no longer available.
There are many people who have been taking the same meds for years with no resistance issues. Adherence is key. So again, I ask, have you given your doctor any reason to suspect that you would not be adherent?
If you feel comfortable with not starting yet, that's fine by me. However, I would ask that you keep a close eye on how you're feeling day to day, make sure you're being monitored at least quarterly**, and take good care of yourself. Starting meds is a personal decision and I support your right to make that decision, even if your decision is unpopular with some.
**Regular monitoring is VERY important for someone like you (ie poz but untreated). Numbers can go south VERY quickly and you may not notice anything untoward in how you're feeling. Many people who are diagnosed late (at death's door with aids defining counts and OIs) go from feeling great one week to lying in a hospital bed, fighting for their life, the next.
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Still, seems to me you are looking for a doctor to confirm that you don't "need" to start now, and now you found one. But "not feeling il at the moment" is not a great reason not to start. That said, I'm sure you will be fine if you stick to Ann's suggestion that you keep a close watch on your health. The reason for that, is that your situation is less than secure. So, it is already precarious.
With this time not on medicine, perhaps you can actively research and write a table.
the justifications to start now
versus
the justifications for you, personally, to wait until 350
If you want to bother. Maybe you want to rely on doctors. Keep in mind the level is 500 in many countries, and there is plenty of movement toward treating soon after diagnosis (which is different than "at infection" obviously). And this is not entirely as a prevention method, it is doctors and researchers thinking that treatment is better than no treatment for their HIV+ patients.
Finally, keep in mind that the 350 in UK is probably also a cost-savings measure at this point... So, is that really in the UK HIV+ populations' interests, in 2014?