Unsure when to start treatment..

[OCboy84]

Hey everybody! Before i say anymore, I just want to say how great a resource this forum has been for me. I've learnt so much from reading everybody else's posts that I just wanted to put my situation out there, and bounce back and forth some ideas. I was diagnosed back in March this year. I was hospitalized for a week with meningitis, tested positive... my CD4 was 351, VL 100 000. In the  6 months before that I had tested negative twice, and my ID doc believes i was seroconverting at that time. Two months later my CD4 was 750, VL 10 000. At that time my doc told me he believed i would most likely have at least 5 years before starting treatment, and we could discuss it when my counts dropped to around 500. Between now and then I've been living my life, having a greeeat time, and just adapting to the "new" me. I thought that I really had a grip of my new diagnosis, and learning how to go day to day. Then last week, my latest labs showed my CD4 351, VL 115000...which is a big drop from June. My doc has ordered my genotype lab, but wants me to start treatment as soon as he gets those results back. I'm really nervous about starting treatment, and never thought i'd have to think about it anytime soon...i realllly thought i'd see at least my 30th bday before starting the meds. He makes it seem like its only one pill a day (atripla) and that its really not that difficult. But for me, i'm sure you all understand, its so much bigger than that! And even then, its such a big decision to make based on just 3 lab results over an 8 months period. It hardly shows a trend. But at the same time i do understand the hit early, hit hard approach. Does anybody have any advice? Any ideas or similar situations? I met with my counselor today at my local ASO, but would really love as much input as possible. Thanks!

[skeebo1969]

  With that increase in Vl along with the lowering of your Cd4's I can see why your doctor is recommending starting meds.  I do understand your fears as I am sure you know there is nothing no one can tell you to take these completely away.

  It's like bungee jumping for the first time, there could be this little problem of a side effect called gravity and you could hit the bottom if things go wrong... but when things go right you wipe off the sweat and say that wasn't so bad.

   Probably the one piece of advice I can give is to educate yourself as much as possible.  Once you find out for sure what regimen they will start you on come here and ask questions.  I'm not going to lie to you, that first night will be scary.... then it slowly should get easier for you from there.  If it is Atripla by the way, I would pick a nice night where you don't have to go into work the next day.  The dizziness feels much like drinking a  6 pack of cheap beer....  and some even miss it when this side effect disappears forever.. 

   You can always tell the Old Milwaukee lovers this way..

[dixieman]

start your meds... asap!

[tednlou2]

I'm sorry to hear about your situation.  Some people are fast progressors.  However, I've often wondered about people who knew exactly when they were infected and those who didn't know for years. 

I was diagnosed one year ago.  However, I believe I was infected at least 8 years ago.  I wonder if my numbers had done the same thing as yours--looked very scary for the first year or two following infection.  If I had gotten tested back then and started seeing HIV doc, would I have started meds right away due to scary numbers that eventually got better.

On the other hand, most studies now say to start early because you can possibly stop the unseen damage HIV is causing.  So, you may end up in better shape by starting early.  And, knowing your numbers, you wouldn't want to wait around to see if they eventually got better without meds.

I wish you all the best.  If you choose Atripla, make sure you are very adherent.  It is one of the easiest drugs to get resistant to--although it is more forgiving if you do happen to miss a dose because it has a longer half-life.   

Let us know how it goes. 

[GNYC09]

I would start meds right away.  The sooner you start the sooner you'll be able to rebuild your immune system.  It might be scary to start but many times the fear is scarier than the reality.  Just know that you will be on track to getting your health back.  Good luck!

[OCboy84]

thanks for all the great advice and encouragement  i'm just finding it difficult to understand how it could progress that fast...i was infected less than a year ago and my numbers are all over the place. i really wish i'd had my labs done at closer intervals so i could see a trend, and not have to wonder if maybe one of the 3 labs I had was an error. I guess i'm going to try and enjoy the holidays, and see my doc when the genotype comes back.

[Nestor]

OC, Sorry to hear about the news.  You've had three labs since March.  The first wasn't good, but as your doctor says you were seroconverting at the time so that one doesn't really "count".  The second was great.  The last one isn't good either but, despite the high VL, a CD4 of 350 is hardly dire.  And with only two labs which are quite different, you cannot know which one was the "exception" without getting at least a third set.  Even if the current thinking about starting early is true, waiting for one or two more sets of labs would hardly make a huge difference.  "Start ASAP!" is language for someone with fewer than 200 T-cells, not 351.  (But what is the percentage?  If it were really low that might make a difference.)  I personally would never start meds on the basis of one set of labs which might be a "blip", although if I got a second set and the VL was still quite high, or the T-cells were lower, I would begin to consider it. 

Another question: any possible explanation for the change?  As in, did you have a flu, or get a flu shot, or something else that would have left your immune system weakened? 

In the meantime I agree with Skeebo:

Probably the one piece of advice I can give is to educate yourself as much as possible.

This is definitely the time to learn as much as possible and made decisions about when you are going to want to start and, when you do, what medicine you will want.  In fact I would modify the next sentence from: "Once you find out for sure what regimen they will start you on..." to "Once you decide what regimen or regimen(s) you will agree to."  You do have a voice in the decision. 

Good luck!

[bufguy]

If you check my numbers I started with relatively good numbers....CD4 511, vl 47000. My doctor encouraged me to start as he felt I was educated, motivated and would stay adherhent. 18 months later on Atripla I have absolutely no regrets. 100% adherhent, (easy with 1 pill per day dosing) and absolutely no side effects. I can even take it with food.

I say go for it!

[Miss Philicia]

Personally I would insist on having at least one more set of labs done before making your decision, but I'd also use that time wisely to be mentally prepared to go on medication.  Regardless of you lab numbers since March this is something you should have been doing.  I realize that your doctor told you that you had five more years, but that was probably something he should have waited to state.  This caused you to have potentially false conceptions building in your mind, so try to forget the "i realllly [sic] thought i'd see at least my 30th bday before starting the meds."

However if you go the route of getting another set of labs done it may be prudent to have it done in another month or two instead of waiting three or four months.

[max123]

hi oc.

i'm from the train of thought with the others that say wait for another set of labs if you can. if you're feeling good and taking care of yourself while 'having a great time', then all should be good. maybe it's just a freak set of numbers. maybe your a fast progressor. listen to your body (hmmm...does that sound too anna nicole?  )

unfortunately, it calculates out to 6 months between your two last blood draws, so it's tough to pinpoint when & why your numbers turned. an aside, it's probably a good idea for you to get used to getting bloods done every 3 months, preferably around the same time of day (numbers can fluctuate given the time of day your blood is drawn).

good luck with your decision...trust, i know it's a tough one to make.

max

[WillyWump]

Yo Oc,

I would start meds. This is just my opinion and not based on any scientific fact, etc...but you've had 3 tets, and 2 of the 3 have shown a need to start meds.

I know how you feel, I wanted to be "that guy" who didn't need meds for many years, but it wasn't in the cards for me and i had to start meds just over a year after becoming poz. It's a non issue now, I'm glad i started. The meds are great and I feel great

goodluck and keep us posted

-Will

[Nestor]

Hi again,

Just in time for your decision, this long consideration of the question has appeared in poz.com:

http://www.poz.com/articles/hiv_treatment_guidelines_401_17726.shtml

There are many things in it worth thinking about carefully.  What leaps out at me is the following:

The guidelines go on to praise the relatively low number and intensity of side effects of the newest ARVs. But there are downsides, and Bellman believes more should be said in the guidelines about the risks and shortcomings of treatment. “We should be cautious about presuming their long-term toxicity is minimal,” he cautions. “My general impression is that the newer drugs are a lot better, but we’ve been humbled so many times before—about what we thought we knew, and what we thought was okay and wasn’t.”

I take very seriously--although I have many questions about it--the evidence that seems to suggest that starting treatment earlier may save lives.  But at the same time, we just do not know--have no idea--what the results will be of twenty or forty years on atripla.  That unknown ought to be balanced against the claimed advantages of starting earlier: especially in a relatively young person for whom starting now would mean decades of meds. 

Someone in this thread http://forums.poz.com/index.php?topic=29712.0 in the LTS forum, also today, had the following to say:

The newbies don't get what these drugs will do to them eventually, until they go threw it themselves.

I may not "get" it, but I can imagine it all too vividly, which is why, within reason, of course, I'm still taking the "start early" advice with a grain of salt, and why I'm surprised by people who start meds while they still have very good numbers or based on one set of labs that may have been a blip. 

Someone who has low T-cells in his first year of HIV might still be going through a rough period to which his body will soon adjust.  TednLou puts it well above:

I was diagnosed one year ago.  However, I believe I was infected at least 8 years ago.  I wonder if my numbers had done the same thing as yours--looked very scary for the first year or two following infection.  If I had gotten tested back then and started seeing HIV doc, would I have started meds right away due to scary numbers that eventually got better.

My first year with HIV was quite rough--I wouldn't be at all surprised if my numbers were bad at that time.  If I had gotten tested immediately and had low numbers and listened to someone who said "start meds ASAP" I might be on my fifth year of meds right now.  And for all the statistics about the advantages of starting early, I still feel that five fewer years on medicines of unknown long-term effects is a good thing.

Finally, I've just spent a bit of time looking at the results of the ACCORD study which was one of the main pieces of evidence behind the new trend towards starting treatment earlier.  It says:

The study compared all-cause mortality between those who started antiretroviral therapy within 1.5 years of their first CD4 count within that range (the "immediate" group) and those who did not start therapy within 1.5 years of reaching this CD4 threshold (the "deferred" group).

If I am understanding that correctly, then even by the standards of this study, starting meds "immediately" after reaching 350 T-cells is defined as "within a year and a half after reaching 350 T-cells."  That's not exactly my idea of "immediately", and it suggests somewhat less urgency than might be supposed from some of the language used when discussing this question.  In other words, while it may very well be a good idea for you to start now, "now" should not translate into a high-pressure "don't even take time to think about it" sort of thing. 

you've had 3 tets, and 2 of the 3 have shown a need to start meds.

But one of those two was almost certainly at a time when he was sero-converting, and therefore shouldn't really "count".

 

[OCboy84]

Thanks everybody! I'm going to wait it out a month or two, and hopefully have my doc order two more labs between now and then. If they don't look too good then I'll start the meds. I've being doing ALOT of research...it kinda gets overwhelming after a while...but i'm the kinda person that wants to know everything before making a big decision. Hope u all have a good holiday!

[Ann]

Hi OC,

I'm glad to hear you've decided to wait and get more results. You're still in the first year of infection and it can take time for your body to adjust and your numbers to stabilize. You might yet go five years - possibly even more - without meds. I've been poz for over twelve years now and I'm still not on meds. You can see my lab results from the past eight years in my profile and you can see how much the numbers can fluctuate. If I'd jumped on the med bandwagon every time my CD4s took a dip, I'd have started several times over by now. You do have time to wait and see.

Ann

[OCboy84]

thanks Ann! i actually saw you're numbers last week when i first came across here. they're really good, and another reason why i'm not rushing in to anything. I'm definitely gonna wait and see. I saw my primary care today and he's ordered another set of labs for me, I can go in for them whenever I want...i'm thinking i'll leave it till after the holidays and take it from there.