I am scared of starting meds

[Sera]

I am about to start taking medication in January. The more I read about it, the scarier it seems - I know they work but it's very hard for me to  make the commitment.

Something else that's holding me back is my nos. I have been positive for 10 plus years and diagnosed 5 years ago. During this period my viral load has been below 1000, my % between 31 and 40 but the cd4 has gone up and down several times with the lowest being 292 as of two weeks ago- the viral load was 572 and 31%. I feel extremely healthy - better than the first few years after diagnosis. My doctor wants me to start soon. 

Is there anyone out there who has had these kind of nos? Is it time to start or will delaying it harm my body more. Please give me your opinions.

[Jeff G]

Welcome Sera ... You didn't say what meds you are taking but my thoughts on this are that everybody reacts differently to diffrent meds .

When I started Atripla I had no side effects at all and was really happy to have found a cocktail combo that was so easy to take . Let us know how you are doing .   

[megasept]

I am about to start taking medication in January. The more I read about it, the scarier it seems - I know they work but it's very hard for me to  make the commitment.

Something else that's holding me back is my nos. I have been positive for 10 plus years and diagnosed 5 years ago. During this period my viral load has been below 1000, my % between 31 and 40 but the cd4 has gone up and down several times with the lowest being 292 as of two weeks ago- the viral load was 572 and 31%. I feel extremely healthy - better than the first few years after diagnosis. My doctor wants me to start soon.  

Is there anyone out there who has had these kind of nos? Is it time to start or will delaying it harm my body more. Please give me your opinions.

Sera: A lot of related questions and concerns. When you know more, I hope you will replace "scared" with "concerned". Sure, there's anxiety.

Why, given what you have shared regarding VL and CD4 history, does your MD want you to start ARV meds NOW? Is he a new MD for you? If you are unsure, why go on meds in January? The MD might be right, but YOU are the patient!

I don't "feel" my HIV unless some of the bloating and belching is from HIV in my gut, not my current meds. I would not equate how I feel with how I am medically, especially when I "feel good" (like today).

I adjusted to my ARVs and you would too; in the end its reasonable expectations, motivation, and flexibility (like skipping or rescheduling plans if you're feeling under the weather). There is nothing to be terrified of here. And the adjustment is weeks, not months. You can do things to make the adjustment easier, dietary things (oatmeal, dry toast), exercise (includes walking), and having a friend to lean on.

You aren't the only POZ to have these kinds of relatively good #s years after infection, and without treatment (Mine were similar). Ann, the moderator, has never been on treatment. My total time on meds has been less than 40% of my time POZ (19 years).

It absolutely does not make sense, ever, to start treatment if you are not "committed"; the right drugs---taken the wrong way---would not benefit you.

The questions seem to be 1) Whether you would be best off starting ARVs NOW and 2) Would you commit to such a treatment anyway? You might as well consider the second question first. That way, whenever you might "need" ARV, you have explored why you don't feel "committed" to treatment. It is a case of "do it right, or not at all." Feel free to PM me, OK?

Good Health!
    -Steven (aka megasept)

[newt]

Hello and welcome

Well, you have a conundrum. Your CD4% is good but your count says start meds.  Up and down can go on and on....

Either start or defer are justifiable.

I can see why your doc wants you to start meds, all the research points to better long term outcomes starting around 300-350 rather than lower.

But you are better to start when you are committed and ready. Since your nos are good you have time to think and are not in any danger.

It may help to talk some more with your doc, or someone else, and deffo with some people who have taken meds.

It is important to note that CD4 count will vary +/-50 easily. Several things affect this. Time of day, other illnesses, food, sleep, gender. If over time the trend is broadly level I wouldn't worry about the odd low result. I would worry about 3+ tests showing a downward trend.

I am not sure anyone is really ready for meds, but you can be prepared. A few weeks wait won't make any differences. It might be better take some time to explore what you really fear about meds, and what you understand your motivation for taking them to be, eg what the goal of taking them is...prevent damage to your immune system? be well enough go on a world trip when your 60? etc.  

I was scared when I started meds. It was like, here goes... It was mainly side effects that worried me. Luckily I didn't really have any to speak of. fatigue also was a big issue before meds, and this more or less went away when I started.

- matt

[Nestor]

Sera,

Welcome!  I can sure understand being confused by numbers which seem to be given a mixed message.  Before I give any opinion, could you please tell us what the last few CD4 counts were before this last one?  That would give us more perspective.  Thanks!

[Sera]

Thank you people for your thoughts and replies.

Jg1962, i am not on any meds yet - i am supposed  to start in january. Steven, i guess scared is a strong word, i am afraid of the unknown. I have been with my Doctor for 4 years and she wanted me to start about 2 years ago when my cd4 was over 400, but i resisted. Now she thinks i have to. I know
 i can commit if i start, but i am just unsure.


Matt, i am especially worried of the side effects. I used to have a huge stomach problem for a couple of years and the whole of this year, the pain went away, and now feels healthier than ever. So, my fear is what if my stomach cannot tolerate the meds and i end up having more pain than before.


Nestor, my nos for the last 3 blood draws are; july - viral load - 615, cd4 -447, % - 31. oct - viral load - 538, cd4 - 394, % - 34. Two weeks ago, viral load - 572, cd4 - 292, % - 33.

Thank you all for taking the time to reply.


 

[skeebo1969]

Matt, i am especially worried of the side effects. I used to have a huge stomach problem for a couple of years and the whole of this year, the pain went away, and now feels healthier than ever. So, my fear is what if my stomach cannot tolerate the meds and i end up having more pain than before.

I use to have that same concern for the same reason.  I was the type of person who would get seasick in the back seat of a car..  and I've had stomach issues since childhood.  I take Atripla and so far have not had any stomach issues from it.  So it may not be a concern for you after all.  There is only one way to find out and you would hate for that to be when your body is truly depending on it to work for you.  Ultimately the decision is yours.....  like you, I waited.

[Ann]

Hi Sera, welcome to the forums.

I've been poz for over twelve years and I'm still not on meds. It is quite possible that your latest CD4 was just a blip. I've had several over the years and the lowest ever was 229. Three months before that result it was 525 and three months after it was 489. You can see my entire lab history by going into my profile (click on my username in the left-hand column). I've also had several results in the 300s. Here are my results from the past two years:

2007-01-16 CD4 567, 26% VL 12,600
2007-04-10 CD4 441, 26% VL 7,610
2007-07-03 CD4 411, 25% VL 5,630
2007-09-25 CD4 525, 27% VL 16,700
2007-12-18 CD4 229, 22% VL 12,900
2008-02-05 CD4 489, 19% VL 13,700
2008-04-29 CD4 433, 26% VL 10,700
2008-07-22 CD4 314, 27% VL 10,200
2008-11-04 CD4 470, 29% VL 3,050
2009-01-27 CD4 459, 25% VL 6,700
2009-04-21 CD4 399, 25% VL 7,390
2009-07-21 CD4 561, 23% VL 35,000

(My doctor tells me my latest VL result is higher because the lab is using a different test and it picks up my particular clade better. He says it's nothing to worry about so I don't.)

If you're not ready to start meds, then you have every right to refuse them and wait to see what your next results are like. As others have commented, you really do need to be committed to taking the meds once you start.

Ann

[Sera]

Skeebo, I have the same problem of motion sickness like you do, can't ride in the back seat of a car for more than two hours without feeling sick. I hhink when I start atripla is what I would prefer but I'll see.
Ann, I have  seen all your nos and I can relate because my cd4 has been like that all through. When I took the first blood test, it was 505, but after that it has been in the 400s with a few times going under. I am a little encouraged. Do you ever feel afraid that the virus is destroying your body while you wait? - Thats the kind of message that my doctor gives me, and I get nervous.

[megasept]

virus is destroying your body while you wait? - Thats the kind of message that my doctor gives me, and I get nervous.

Sera:

Yes, I do worry a bit about that. But remember, the treated and undetectable (me: 2008- now) ALSO have living HIV in our bloodstream, in our gut, etc. My message is that if your MD might be among those that think every POZ should be on treatment all the time, ask him/her "What about the long term effects on the heart, liver, and kidneys?" I say it's a balance.

I am glad (grateful to researchers, too) my meds brought my VL down from 88k to less than 50 copies/ML and increased my CD4 from 280 to around 500. I don't know why so many think only of quality of life issues (mostly bathroom) when discussing "side effects" when the downside might be a lot like our virus itself---something I cannot feel and only tests can measure. I am more worried about what I cannot feel that what I can.

Once I decide to take meds (second time for me) I am compliant. I want to do it right, and pray for the best!

Good Health!
-Steven (aka    megasept)

[aztecan]

Hey Sera

You wrote:

... the last 3 blood draws are; july - viral load - 615, cd4 -447, % - 31. oct - viral load - 538, cd4 - 394, % - 34. Two weeks ago, viral load - 572, cd4 - 292, % - 33.

While the viral load is low, as you mentioned,  the viral load is of greater importance once you start meds.

Your CD4, however, has consistently diminished (447, 394 and 292 respectively.)

If it were me, I would agree with your doctor. It is time to start meds. As others have said, it is a commitment and it is somewhat scary.

I know I was a bit freaked out when I started. That was a while back and things are a bit easier now (more meds to choose from, better understanding of side effects.)

Regarding side effects, please keep in mind you are worried about what might happen. Some people have side effects, others don't. Some experience a mild issue, others not so.

It is very individual. If I had one bit of advice to offer, it would be not to worry about side effects until they occur, if they occur.

Whatever you decide, keep us posted.

HUGS,

Mark

[Ann]

Do you ever feel afraid that the virus is destroying your body while you wait? - Thats the kind of message that my doctor gives me, and I get nervous.

Honestly? Sometimes yes, sometimes no. Most of the time no. I recently discussed this extensively with my doc (he's very well respected in the field and is also an hiv phamacologist, so he knows the meds better than most) and he's of the opinion that the problems I have that we think are due to hiv will either be made worse by meds (chronic diarrhea) or that the meds won't change things at all (joint pain). Like Steven says, it's a balancing act.

My doc and I discussed the possibility of me going on Isentress and Truvada (in light of the new recommendations), but he wants me to wait for another new drug that is in the pipeline. He thinks it's going to be more effective than Isentress and will have an even better side-effect profile. (Elvitegravir [GS-9137]) He is definitely of the opinion that in cases like mine, the virus is preferable to the meds.

He's very fond of pointing out that the newer meds that are being used haven't been around for that long yet, and it took a while for some of the long-term side-effects of the older meds to become apparent. He says that we know more about the virus than we do about some of these meds - so I guess it's sort of a case of "better the devil you know". He reckons that as long as the body is keeping the virus down to a dull roar, with decent CD4s, it's better to not treat.

Ann

[Etay1207]

My numbers have gone up and down similar to yours the first few years after diagnosis. My numbers just got "bad" over the past year or so. I am not ready to start meds yet, so I'm not worried about my numbers.  I'm healthy and to me, that's all that matters.

[Sera]

Thank you very much everybody for all your support and encouragement.

I will keep you posted on what i decide in January.

Happy Holidays.

Sera.

[Ann]

Etay,

While your numbers may have been similar to mine in years past, right now your numbers, quite frankly, suck. If I were getting results like that I'd be on meds, whether I was feeling good or not. You're playing with fire, mate, and you're going to get burned.

Ann

[mecch]

Pretty normal to be scared of HAART and scared of HIV. As people say here, its a balancing act. When you and your specialist decide the balance is tipped in favor of HAART, its just a fact to deal with and take solace in the other fact that most HAART nowadays is pretty bearable and for some people even unnoticeable.

[sam66]

  Hi Sera,
              I guess you will feel it in your heart, when you are ready to start meds. In my case I started
       meds two months after I found out I was +ve, although I was not ill, haven't had any health
       problems in the past 10 years.  had not even seen a doctor that I can remember.

                   My no's were  cd4/273    ,  cd  % 14  ,   vl / 8600  , when I  started meds .

                good luck. 


        Hey Etay I have a question for you,   
                   

I am not ready to start meds yet, so I'm not worried about my numbers.  I'm healthy and to me, that's all that matters.

           Do you think you will  ever be going on HARRT or any other meds to treat hiv, or do you plan
      not to take any meds for the rest of your life ?

     Sam

[Etay1207]

Hey Sam, I don't know yet if I will take HAART. I do have issues with meds but before I take anything I must know for myself that I am sick. According to the way we interpret bloodwork it would indicate that I'm sick. But clinically I'm anything but. I need some "sign" that I am immune compromised. People with low CD4's get PCP and thrush. So do people with higher CD4's. I have noticed a decline in t-cells but I have yet to notice a decline in health.

[leatherman]

Hi Sera. I always get an ironic chuckle out of people being scared about starting meds. I don't want to interfere in the decision that you and your doctor need to make about exactly "when" you should go onto meds; but I do have some thoughts for you about the "being scared" part about when you do start the meds.

Lots of people (like me, my partners, and nearly everyone else that I've ever met in person) never knew that they had HIV, until they were deadly ill in a hospital with an OI and diagnosed with AIDS. There is really NO choice at that point but to start meds. There was no debate, discussion, or worry about numbers. In that situation, you don't really get an option to "wait and see" or even get a chance to be scared about taking meds and possible side effects. At that point it's basically start taking the drugs fast and pray you don't die before they have a chance to beat down the HIV. When you're in that position, you never ever look at starting meds as something to worry or be scared about. You look at it as the only way to save your life!

Clear back in 1992, I had few qualms about starting AZT monotherapy. Quite simply, my choices were to take that drug and perhaps gain some extra time or to die. In a similar way, I don't worry about popping an aspirin either. Aspirin usually will cure a headache; but is a killer drug too. When I took some at 25 yrs old and was hospitalized for 3 days with the allergic reaction I realized just how likely it could kill.  AZT, liquid Kaletra, ddI tablets, liquid Norvir were all crappy meds with terrible side effects, yet all of those contributed to me being alive today. Untreated HIV almost always leads to AIDS which leads to death. I've known plenty of people who died from AIDS (including my two long-term partners); but I have yet to hear of anyone dying from the meds. Matter of fact just the opposite! Everyone that I've ever heard about actually got better and stayed alive by starting meds. Trust me, having nearly died myself a couple of time from not being on any meds; taking meds, staying alive (even if you have to put up with some side effects) is a lot more preferable to being dead.

Sera, if you don't mind, I'd like to make a quick hijack. thank you!

People with low CD4's get PCP and thrush. So do people with higher CD4's.

do you have a reference link for that information? I have heard of people with high cd4s and thrush; but never high cd4s and PCP. I believe that it should be impossible to have PCP with high cd4s, as PCP only flourishes in a compromised immune system, indicative by the low cd4 count. But if you have some proof to back up that statement, I'll be glad to see that.

I need some "sign" that I am immune compromised. ... I have noticed a decline in t-cells but I have yet to notice a decline in health.

Just like I mentioned to Sera about the people that I personally knew (past tense as they are all passed away), it sounds like even though you watched your decline through the later half of this year, you could be one of those ending up in the hospital, suddenly forced onto meds and hoping some OI doesn't kill you while you get that viral load knocked down and your immune system a chance to rest and build back up. I don't understand why you have bothered to track your numbers if you didn't plan to use that information wisely to treat this disease that is destroying your immune system. Just because you were a slow-progressor doesn't change the science of the exponential growth rate of the HIV in your system in these last few years. You state you were infected around 1999 and ten years later you have now gone right on past the markers for starting early therapy, and are nearing the time when you'll be diagnosed with AIDS. What are your future plans? Do you plan to actually wait until you have an OI to start meds, or will you start after another set of "bad" numbers? I hope for your sake that you don't wait so long that you won't be able to recover.

My last partner didn't test for years. In Feb 2008, he was sick with fevers and mild pain for a month thinking he only had the flu. But when he wasn't getting any better the doctor put him into the hospital for futher testing on March 1. After nearly a week worth of testings, we were told he had 3 tumors of non-Hodgkins lymphoma, and AIDS with a viral load over 800,000. After HIV-therapy and two rounds of chemo while he was in the hospital for 60 days, there was no improvement. I brought him home and 9 days later he passed away on May 1st.

Who knows what tumors or OI could be building inside you while the HIV is ravaging your immune system. Hopefully things won't turn out as bad for you as they did for my partner but as Ann said so well, you're playing with fire and I too hope you don't get burned - or worse!

[Peacock]

Hello, I was also scared before starting meds-I was scared of the side effects and also scared of 'sailing' through all the meds too quickly.
I didnt have any reason to be scared because when I started HAART I experienced the usual nausea for the first 2 weeks (its apparently common) and then it passed, and since then I have been as healthy as before I started the meds.
But I must add that before I started the meds I suffered from terrible constipation..Now my tummy works beautiful. So I guess Im actually in better health!
The meds control my viral load and my Cd4 has risen thanks to HAART..and I havnt sailed through all the meds like I thought I would.
In fact Ive decided in the first year of becoming hiv+  that theres no point in me worrying because I could live well into retirement age- and whats the point in spending all those years worrying about stuff that could never happen? I may as well just relax, take my meds and enjoy the ride to retirement..and Im glad I decided not to worry because Its been several years since becoming + and I havnt wasted any of them by worrying and being anxious. (I just wish I could have the same attitude towards my job)
I also felt like I was being 'pushed' into staring meds- but unfortunatly if you look at my Hiv and Cd4 results below, I reached the target for recommended treatment and I followed the protocol. My Hiv just wouldnt bargain with me for more time without meds.

[Jeff64]

I have been taking Atripla for awhile now... the only side effect I have experienced is really graphic and entertaining dreams. It has kept me healthy with no other sides except for the fun dreams. I asked my doc about the dreams- he has no idea why they happen, but they do!

Since we are on this planet for such a short time...listen to the Dr. and do whatever you can to remain as healthy as you can for the maximum amount of time...

[Hellraiser]

Etay, I haven't had any of the severe OIs associated with AIDS, but I have noticed a general lack of resistance to small scale infections.  If I have a hangnail it will get infected, if I have any sort of scratch or open sore it becomes a sort of wait and see with the hope that it won't swell to the size of everest and then become painful and abcessed.  This is the stuff that has plagued me constantly for a few months.  I don't have the experience some of these guys and gals have with numbers versus health, but I think that CD4 counts as low as yours will allow your viral load to go upward at an alarming rate.  I hope you continue to remain in good health, but realize that the medicine is meant to be preventative not curative.