Anyone Started Meds when cd4 Count Still High?

[zorro62]

Hello
Firstly, wanted to say how much this website/forum has helped me in the 4.5 mths since I was diagnosed poz. The med info has been enlightening. The personal stories have given me hope during my frequent moments of despair.

I was neg when tested on Jan 9th 09 and poz when tested on April 2nd, 09; needless to say, feeln like a dumbass. I am pretty sure this nasty intruder invaded my body on Mar8th.


As a result of only recently becoming poz, my cd4 is still above 1k(and VL on the rise and at 3k); (have had 2 blood tests thus far)

I see 2 very distinct schools of thought on the Web about Starting Meds early versus Starting meds when cd4 count falls to 350.

My question:

Has anyone out there started meds right after catching the virus when the cd4 was still well above 350k

If so, can they describe their experience with this approach and offer any words of wisdom/advice?

My thought is to stomp all over it asap and start meds now....and would like to hear from anyone who already went down this path

[confidentIwillbeOK]

I will be eagerly watching the replies to your question!     Kind of in the same boat and will probably be grappling with this very question in the near future. 

[Inchlingblue]

This question would get a lot more traffic if it were in the Living With HIV forum, maybe you can ask one of the moderators to move it? They probably will when they see it.

Re: your question, so many things to consider pro and con. One of the things I want to mention on the pro side is that starting within the first year, as early as possible, means the reservoirs of HIV in your body will be a lot smaller and limited to fewer types of resting Tcells.

Whether or not this will matter as far as one's overall health and as far as future efforts to eliminate reeservoirs is hard to predict but, given the fact that several of the current meds are very tolerable, starting very early may end up being a good thing.

[Ann]

This question would get a lot more traffic if it were in the Living With HIV forum, maybe you can ask one of the moderators to move it? They probably will when they see it.

To be honest, this forum is the best place for this question as it directly pertains to someone newly infected and diagnosed. Others in the same boat will be looking for this type of information in this forum.

Zorro, welcome to the forums.

I'm more from the "wait and see" school of thought. I've been poz twelve years and I'm still not on meds and it hasn't done me any harm. I'm not on meds because my numbers don't indicate the need. You can see my numbers history in my profile.

Whatever you do, you don't have to do it right now. You have time to read the available information and decide what's best for you. There are articles in the Lessons section of this website that are an excellent starting point.

Ann

[Inchlingblue]

Here's a recent study:

Study Suggests Immune Systems of Untreated HIV-Infected Individuals May Deteriorate Faster Than Previously Thought

LINK:

http://www.thebody.com/content/treat/art53110.html

[max123]

hey there. well, i too was diagnosed (2 weeks ago) and am still grappling with accepting what has happened to me. despite always having been an advocate of safe sex, i got infected anyway. go figure...life does go on and for me, it's now time to pull myself up by the jockstrap and step up to being a 'guest at the party that i never wanted to attend'. i am hoping that i can find the inner strength & insight from forums like these to move thru all of this as swiftly as i can. i am still so new in2 this that my cd4 & vl counts haven't even been drawn yet. nonetheless, i have already been surfing the net and also found a big discrepancy over when to begin treatment (arv). if you find anything earth shattering about the pros & cons about starting treatment early, please share. thanks...

[newhorizon80]

My doctor just recently (on my August draw) mentioned again about new research of starting meds at CD4 500 to put the thought in my head, but he will only currently will start at the current guidelines (350) or unless I feel a need to start early, which I don't.  It's really up to you.

I just got my newest numbers today (from my 08/03/09 draw) and like how my VL is falling, but CD4 had lowered a bit as well (maybe working this 4:30a shift is adding more stress on my body?).

[madbrain]

Here's a recent study:

Study Suggests Immune Systems of Untreated HIV-Infected Individuals May Deteriorate Faster Than Previously Thought

LINK:

http://www.thebody.com/content/treat/art53110.html

Very interesting study, thanks for posting it !

[madbrain]

Hi,

Hello
Firstly, wanted to say how much this website/forum has helped me in the 4.5 mths since I was diagnosed poz. The med info has been enlightening. The personal stories have given me hope during my frequent moments of despair.

I was neg when tested on Jan 9th 09 and poz when tested on April 2nd, 09; needless to say, feeln like a dumbass. I am pretty sure this nasty intruder invaded my body on Mar8th.


As a result of only recently becoming poz, my cd4 is still above 1k(and VL on the rise and at 3k); (have had 2 blood tests thus far)

I see 2 very distinct schools of thought on the Web about Starting Meds early versus Starting meds when cd4 count falls to 350.

My question:

Has anyone out there started meds right after catching the virus when the cd4 was still well above 350k

If so, can they describe their experience with this approach and offer any words of wisdom/advice?

My thought is to stomp all over it asap and start meds now....and would like to hear from anyone who already went down this path

Sorry to hear about your new diagnosis, but welcome to the forums.

I asked the same question as you did earlier, in the forums but there doesn't seem to be many studies on people starting meds with a CD4 count over 500.

Your numbers are very good however. 1k CD4 is great. What is your % ? Your VL of 3000 is also quite low. My doc says anything under 10,000 is neglible.

Another thing you have in your favor is that you know the timeframe of your infection very well based on your close neg and poz tests. I tested neg june 2006 and poz november 2006, so I know I was infected in 2006.

I chose to wait for meds, and so far don't regret it. I am still not on meds. There is no evidence of my CD4 count going up, my percentage has gone up, my VL has gone down. I'm clearly not in the majority as I'm now being studied as a "viremic controller".  I don't know what the percentage is for this category of controllers, except it's less than 5%.

If I were you, I would for at least a couple more tests. Unless you have a steady decline in CD4 and increase in VL at every one, then holding off meds may be preferable.

[zorro62]

Thanks to yall for the replies...us newly poz peeps take solace in hearing from others who care...

The study is food for thought...and I will discuss with the dr on my next visit in Sep...

madbrain: the % is 41.8 as of 7/30...but dropped from 45% on 4/23....I suppose the curse of early detections is that you never know what numbers the next test will reveal....I have decided to test monthly for the next 3 mths...and try to establish a pattern....gawd...I cant believe this is happenin  to me....

I will be silent on here for the next week(work trip); but appreciate further insight

[megasept]

I see 2 very distinct schools of thought on the Web about Starting Meds early versus Starting meds when cd4 count falls to 350.

My question:

Has anyone out there started meds right after catching the virus when the cd4 was still well above 350k

If so, can they describe their experience with this approach and offer any words of wisdom/advice?

My thought is to stomp all over it asap and start meds now....and would like to hear from anyone who already went down this path

Hi. Wisdom? No, just some (partially) relevant personal history. I didn't start ARVs right away, BUT DID START THEM WHEN CD4s REMAINED HIGH. I give my opinions here, as well.

I started "dual therapy" (3tC + D4T---a rare choice then---unknown today) over 5 years after seroconversion---certainly not right after "catching the Virus". Pre-therapy CD4 counts fluctuated from 670 to 800. They shot up to 1100-1400 during therapy. My  VL was suppressed, sometimes below (statistical) zero, and other times as high as 1000. I think it averaged 100-400.

"Stomp all over it" is appealing, but I don't agree that HIV is best treated immediately and permanently for all poz. I would not have started therapy so early if given the chance again. "Side effects" is not a big concern of mine (Being alive and healthy is more important to me than how I feel at the moment), though I have always felt better off meds than on them. Organ damage from years and years of therapy, particularly to the heart, liver, and kidneys is my primary concern.

After 5 years I stopped the therapy above, at my MD's reguest. My CD4s gradually dropped with many plateaus. My VL remained low and even reached and maintained zero again for about one year, before climbing gradually up to 80k. 7 years later, I resumed ARVs (Insentress + Truvada) when my CD4 rate of decrease was clear and consistent, and below 300 (280). That therapy is current, and successful in some CD4 improvement/VL "zero". I expect I'll stay on it, indefinitely.

I favor start therapy when VL > 100k and/or CD4 <300. I follow this maxim now. I don't know whether damage of untreated VL is worse or the risk of organ damage. I suspect they both matter, but probably worry more about protecting my major organs (we live a long time, so our treatments can stretch into decades).

I have no opinion on whether, on the balance, newly seroconverted (brand new) might benefit from immediate therapy. That choice doesn't apply to most POZ. Since most therapies continue indefinitely, not short term, my concerns of organ protection still apply.

Feel free to respond here, or PM me.

-megasept

[boneil]

Interesting to read these replies because I am in a similiar situation - when to start treatment, is early better?

I was infected only 6 weeks ago and my first lab numbers were CD4 480 / 31% with a VL of 18,500.  My doctor i can *sense* favors earlier treatment but is supportive of my decision to wait until I am sure acute infection is over and seeing what my numbers say. 

When to begin treatment is really challenging for us newbies that don't necessarily have years of non-med numbers under our belt.   

[madbrain]

zorro62,

madbrain: the % is 41.8 as of 7/30...but dropped from 45% on 4/23....I suppose the curse of early detections is that you never know what numbers the next test will reveal....I have decided to test monthly for the next 3 mths...and try to establish a pattern....gawd...I cant believe this is happenin  to me....

I will be silent on here for the next week(work trip); but appreciate further insight

45% to 41.8% is not a very big change. And both are very good numbers. I never had a % above 40 and I'm considered a controller.

I don't think doing more frequent testing is going to help you any. But it will keep you up at night more every time you have a new test. I asked my doctor to do that a few times and he agreed for a short period, but I went back to the normal 3 months intervals afterwards, because it was just a waste - we weren't learning anything new from smaller intervals. These days my doc has suggested 6 months intervals because there is so little change, but I haven't taken him up on that so far, I am more comfortable with the normal 4x a year - I want to know in case there is a sudden change.

[physicsguy]

I started meds about 3 months after I was infected and have no complaints about it.  You basically have two schools of thought - get it under control early and perhaps reach better immune system recovery and prevent HIV from doing any damage, or wait to avoid the potential for serious side effects that could emerge from long-term medication use and avoid the risk of developing resistance early on.

It's not really a clear decision and there are pros and cons to each approach.  It really comes down to, IMO, what you feel is best for your particular situation (whether you can stick to treatment right now, whether you want to deal with it now, how do your numbers look, etc etc etc).

[bufguy]

I started atripla with a CD4 of 511 and vl of 47000 only 2 weeks after being diagnosed. My doc started me because of my moderately high vl. Plus he said I was educated and motivated and saw no problems with adherence. He was right....100% adherent and other than the first week, no side effects.
Looking back I'm glad I started. I felt treatment was inevitable and feel good about being proactive.

[ruralguy]

I think your age is a factor here too.  If you are 20, then the prospect of many years of toxic drugs is perhaps an issue.  If you are 50 then getting hiv under control more quickly is more important as you have a greater chance of some nasty surprises if you don't.

[confidentIwillbeOK]

I appreciate the information in this thread and have one additional question I would like some thoughts on.  I know there is usually no "right" answer about when to start treatment (in cases where numbers are good or excellent) but when a doctor gives you his or her initial recommendation how many people consult another specialist for another opinion or additional insight?  I am quite confident in my provider but do not know if it is generally acceptable or desirable, as with other major medical decisions, to seek a second opinion.  If it is would it be appropriate for me to tell my PCP that I am getting a second opinion or should I do it confidentially?  I understand that no matter how many opinions I get it could be a difficult decision but I was just thinking that a second opinion could glean additional insight into my particular case and/or could allow me to better understand different angles of the various pros and cons.  Thoughts? 

Also, I think if I did seek another opinion it should be with someone not affiliated with the current facility I am getting care at....true? 

[Inchlingblue]

There's one second opinion you can get online from one of the world's foremost authorities on HIV treatment and that is Dr. Joel Gallant (I think you mentioned you read his book?).

He has said in the past that if it were him, he would prefer to start meds as opposed to letting HIV run its course. Here's a very recent Q&A:

Starting therapy with a high CD4 count

Posted on Aug 13, 2009
I teted HIV+ on 13 July 2009 and my CD4 counts were 637. I was told that I am still fine and need not take ARVs, why should I not take them now to boost my Immune System?

On Aug 17, 2009 Joel E. Gallant, M.D., M.P.H. replied:
Starting treatment would be reasonable--not to "boost your immune system," but to prevent future loss of immune function and to decrease immune activation and inflammation caused by untreated HIV infection. While this is not currently the standard approach to treatment, it's a reasonable one. In my own practice, anyone who wants to be on therapy (and can stick with it) is a candidate for treatment, regardless of CD4 count or viral load.

LINK:

http://www.hopkins-hivguide.org/q_a/patient/recent_questions/cd$_counts.html?contentInstanceId=496709&siteId=7151

[confidentIwillbeOK]

Yep...I have read his book and a ton of the online Q&A on the Johns Hopkins website. This data is extremely informative and very helpful to newbies coming up to speed on the treatment plans and strategies for this disease. While I greatly appreciate his information I thought that perhaps a second opinion from a clinician who has information about my particular circumstances (health history, age, counts, current medications, allergies, etc..) would be helpful.  I guess I am leaning towards treatment but I want to rule out all the things that could potentially make it the incorrect decision (LTNP???...LOL).  I just don't know how common it is for people to consult with more than one doctor and if the second opinion should be "blind".  Access to world class HIV specialists is not an issue as I have a good medical plan and am in a city with some of the top hospitals in the world.....so is there any reason I should not go down this route?

   

[Inchlingblue]

  I guess I am leaning towards treatment but I want to rule out all the things that could potentially make it the incorrect decision (LTNP???...LOL).  

As far as LTNP goes, this is the only time Gallant does not recommend early treatment (or at least that's what he said in response to a question once). Yes, you should make sure whether or not you're in that category by all means.

If it were me, I would get a second opinion, for peace of mind. Second opinions are very common and any good doctor worth his salt won't be personally offended if a patient wants one, especially when it comes to something this important. Whether it should be blind or not is up to you, I would play it by ear. Once you have the second opinion, depending on what it is, you can choose to disclose it (or not) with the other doctor.

Of course not just any second opinion, it needs to come from someone who's extremely knowledgeable and experienced with HIV otherwise it means nothing, as you may agree. The thing is, you might find doctors who are equally as knowledgeable having a different take on when to start and on whether or not you should start, if you rule out being a LTPN.

It can be frustrating weighing the damage the virus is doing v. the damage the meds might do. The single most important unanswered question when it comes to HIV treatment is: when is the optimal time to start? There is no real definitive answer to this.

And if you decide to start the next big question is: which meds?

[confidentIwillbeOK]

"And if you decide to start the next big question is: which meds? "   <====Hey....one big decision at a time is enough for me for the time being.   

Thanks for the advice.

[tony_wdc20001]

Its seems that everyone who tested early for HIV had high CD4 and relatively low VL.  I was tested negative in Feb 2009 during a bad flu but during a annual physical in late July my test came back positive.  My doctor told me of the two schools of thoughts on early and postponed therapies, he believes treatment should being immediately but the choice would be mine based on the numbers and genotype. Unfortunately, I didn't have the option...although appearing perfectly healthy on the outside my CD4 came back 147 and viral load 40,803 the silver lining was the genotype showed that I had no mutation so I could choose any drug.  We decided on the Viramune+Truvada. I have to go back every two weeks for two months to have liver work.

Curious to know if anyone else had very low CD4 counts with initial HIV infection?

On top of being positive, the low T-cell count has really frighten me.

Thanks

[prettyfighting1]

cd4=134 first week of august, I still feel healthy
going to start my med this coming 1st week of september..
Im hoping and praying that meds will be compatible with my body and no bad side effects..
Anyone, I need some good thoughts..

[madbrain]

Hi,

Its seems that everyone who tested early for HIV had high CD4 and relatively low VL.

That is not correct, some people are faster progressors than others. My bf tested for HIV early and didn't have good numbers either. He was neg 5/2006, poz 11/2006 with 4000 VL, but only 300 CD4 and 9%. The 9% put him in the AIDS category, just like your 147 CD4 does. He appeared perfectly healthy too, just like you.

Curious to know if anyone else had very low CD4 counts with initial HIV infection?

It's been known to happen. I know others in my HIV support group at Kaiser who lost essentially all their CD4 in their first year of infection, in between their last neg test and first poz test.

Everyone is different. There are clearly some genetic differences in play. The scientists are studying this.

On top of being positive, the low T-cell count has really frighten me.

Don't be frightened. The good news is that you are still healthy. And wiith your counts, unlike the OP in this thread, there is no question that you should start meds now, so you don't have to ask yourself about when is the best time to start - it's fairly clear cut. Your situation is somewhat different from the OP's though, so you should probably start your own thread if you have more questions.

[macaque3]

Hey confident and zorro:
I too have faced this to-treat-or-not-to-treat problem and am perplexed. I got diagnosed in early May, during the acute viral syndrome, probably weeks after infection. of course the doctors i consulted (three) were eager to get me treated. My VL was progressing fast, 6K up to 28K in a few weeks. CD4 remained in the low 500s both on and off meds, with lowish 28%. I was convinced by the docs relying on some fairly new and inconclusive data that starting meds early would preserve my immune function. But of course the study is ongoing, the ppl are newly infected, so by definition they don't knowthe long term outcomes. I had bad reactions to meds. Liver functions went up quickly on Atripla, had to stop. I was gunshy, wanted to wait for a second cocktail but again doctor was persuasive, and I started Raltregravir + truvada in early Aug. Within 2 weeks i had a terrible rash, (i had psoriasis as a child), had to stop it. Turns out it may have been another medication behind the rash, but it was intolerable. I am now very skeptical of starting meds early, based on my N=1 experience of two bad brief trials. I've had some other problems off meds last several weeks, and am not eager to see the numbers, but I've become more a believer that the meds can have a high toxicity, and perhaps moreso if you're "healthy" meaning high CD4s when you start.
That's just my experience. I am eager to hear how you are doing. I too am coming to rely on this forum, as i feel like even my positive friends are not understanding this.
-M

[confidentIwillbeOK]

I am waiting for another round of numbers before I decide what to do.  My initial VL (about 1-2 weeks post ARS) was 480,000 and the CD4 a week or so after that was 429 (34%).  One month later the VL was 25,000 and CD4 471 (35%). 

My baseline white blood cell count has always been low (3500 to 4000).  I pulled my old lab records from my last 2 physicals when my new doc mentioned a low WBC. I wonder if this means my CD4 would have been on the lower end of the "normal" scale prior to getting infected?

Still trying to decide what to do in a few weeks if the numbers come back the same as the last results or even a little better. I am not totally averse to treating "early" but am still weighing all my options.  Once I have my doctor's recommendation I am going to follow up with a meeting at Mass General's ID practice to help me shape my opinion.  I spoke with them about 3 or 4 weeks ago and they thought it would be best to have more numbers and an expected course of action before I consulted with them.  I also met with a couple of really awesome guys at AIDS Action in Boston and they gave me a ton of info about meds, potential side effects, data on recent studies about early treatment, etc....

Reading everything on here really helps me too.

A consideration for me as well is what the other half will do.  His second set of numbers were similar to what mine are now but spiked up at the last test last week. His ARS was about a month before mine.  If he goes on meds it makes it harder for me to not do the same....

Anyway, no easy answer but at least I think I will make the right decision for me when the time comes.  Whether that time is next month or not I don't know.....   

Sorry to hear about your initial side effects.  Hope your next course of action works out OK.

Steve

[macaque3]

It sounds like you have no shortage of qualified professionals and very experienced HIVers to give you advice. I would be interested to hear what the Mass Gen folks say. Although I work in medicine myself, all this is very new and foreign to me [kicking myself now for that!] and so i've relied-perhaps too much-on the advice of experts who, when it comes down to it, can choose to interpret midling-at-best data however they are swayed to. I sort of hate to admit it, but all the science seems to go out the window when making this choice for yourself. You've armed yourself with knowledge and data which is perhaps more than I can say to start, so I think you'll be content with whatever decision you make.
I'm eager to hear how things are going for you and your other half.
Best,
Larry

[c78]

Hi,

First off, I'm the "new guy" here, having just found this forum today... I'm amazed at what a great and supportive community there is here. I wish I'd have known about this when I first tested positive (January of this year).

I've got a wonderful doctor at a University research hospital, and he's been telling me that the latest research is indicating long-term benefits to starting medication earlier than the traditional guidance suggested. I've also read some articles along the same lines.

I've yet to start myself (CD4 of around 450, and viral load around 5,000), mostly because of some liver abnormalities they want to resolve without clouding the labs with HIV meds.

[esper]

Hi All, also new to the forum, it really is a huge help and source of info. This, like for a lot of you, is the million dollar question for me too. Sorting through the pros and cons isn't easy and the goal posts seem to be moving.  I'm not living in the states now, but I'm lucky to have a great doc who was US trained. And he was very upfront about the growing view that there are benefits to starting earlier treatment. I'm over 50 so that's a factor for me, good heath otherwise. My second set of numbers came back showing a doubling of the VL. I'm likely to decide to start this year even if the numbers remain the same (certainly if they worsen).  I'm optimistic - generally, the drugs now are very effective and better toxicity than even a few years ago (and lots of options to choose from), lots of research ongoing, with adherence and a fair wind you can live a long time. good luck with your decision.

[tednlou2]

You've gotten a lot of responses on this issue.  I've read where researchers are doing studies on this very issue.  I can't be for sure when I was infected.  I do know that my former partner is poz and the last time we had sex was in late 1995.  So, it is possible that I've had this for 14 years.  I'm not on meds yet.  My current CD-4 is 800 at 27% and VL 14,000.  I'm hoping this means I'm one of those slow or non-progressors.  I'm sure I'm not that lucky.

I will give you some info-- I found out I was poz last Dec after getting mild flu that turned into strep-pneumonia--not the PCP pneumonia.  I was in the hospital for a week and had CD-4 of 171.  After getting better, my CD-4 rebounded to over 1,000.  So, I'm debating when to start meds.  I know that I will for sure start when it gets to around the 500 range.  I"m not going to wait for the 350 that is recommended.  All the research I've done suggest better outcomes if begin above 500. 

Even with the pneumonia I got and the fear of getting H1N1 and getting pneumonia again, my doc wants to wait because of potential problems with the meds.  There's another doc in the practice who wants me to start now.  So, you get different answers from different docs.  I've also asked 2 different docs on the website thebody.com and got 2 different answers.  One said to wait and the other said he would start now.  By the way, thebody.com is a very good resource.  I've asked like 20 questions and they have answered them within a day or two.

They keep telling me I need to really be ready to start and prepare to be on them for life.  You have to make sure you take your pills every day.  I'm sure you've already been told all this.

Good luck.  I would like to hear what you decide.  My email is:  tednlou2@aol.com 

[tommy246]

I think your age is a factor here too.  If you are 20, then the prospect of many years of toxic drugs is perhaps an issue.  If you are 50 then getting hiv under control more quickly is more important as you have a greater chance of some nasty surprises if you don't.

Thats for sure im 49 and that influenced me to start as the older you are the less your cd 4 recovery,but also anyone young starting treatment wont be on these meds for 50 years there are new ones all the time and constantly improving.

[tommy246]

Hi its me again just read your threads and got the full picture.I have a similar story with good numbers. i am 49 yo healthy male neg jan 06 pos dec 08 with 505 cd4 , 17% and 1.500 vl ,  for the last year ive always been between 500 to 650 cd4 around 16 to 17 % (low 14% is aids = 200 cd4) ,vl stayed around 60.000.
Apart from when i took ill in aug 09 with pnuemonia ill at home for week then at hospital day 1 tested 190 cd4 and 15%, vl225.000 1week later numbers recovered to 415 cd4 and 20% doc said this showed my immune system was still strong, 6 weeks later cd4 590 ,vl 59.000 16 %, i also had shingles the year before.
Some docs use the cd4 count more than % as mine did he wasnt worried about low % as cd 4 was good but decided to start me on meds atripla 2 weeks ago all good no probs just a bit dizzy at 2am toilet stop,first few days im glad i started that pnuemonia scared me ,meds are fine nowadays take them right lots of water to look after the kidneys and liver.I also believe hiv does damage even with good numbers chronic immflamation etc alot more than the meds that swayed me. Its like not treating someone with a bad heart till there due a heart attack.
Have you read johns hopkins hiv website the renowned dr gallant on there awnswers your questions he says he would start anyone willing and able on meds reguardless of numbers.,good luck.

[sir2545]

i am in the same situation- my husband and I have been married 10 years and have a daughter who is ten and half. Due to my husband 's CD4 count they are saying it is highly likely that we have been positive for more than 10 years but because we never got tested we do not know. They think our daughter is very likely to be positive- all of us have never spent a day in hospital or suffered any serious illnesses, colds have probably been once or twice a year. My husband had a serious chest infection last year- my daughter looks the picture of health- we have not got her tested because we just found out yesterday and i am numb- in denial anxious and depressed. How do i tell a child that she is positive- i just want all of it to go away- i keep thinking how is she going to live if she is positive. I understand and take comfort from what everybody has been saying to the original post but just want to cry and i cant. so to you i say that i am trying to find strength and hope i will accompany you on a journey of feeling stronger

I read this and it made me wonder if treatment should begin immediately.  If someone can go this long without their CD4 being detectably low, it would make more sense to wait on treatment because of the long-term damage to vital organs and the earlier development of immunity to the drugs by the virus.  I guess it depends on the initial results of CD4 and VL.  Another factor to consider is how more advanced the medications will be in the years to come (hopefully) and if we knew that would be the case then it would prolly be best to start treatment early to maintain our immune system and not take any chances.  Now that I've sort of come to terms with being positive, this has become one of the single most important questions I've been pondering.  I also would like to say thanks to all the people on here.  I just found out yesterday and you guys have really been an inspiration.  I go for my ID Doc appt on Dec. 9th.  Wish me luck.  I love you all and wish you the best!!  HAPPY THANKSGIVING 

[mecch]

Curious to know if anyone else had very low CD4 counts with initial HIV infection?

Read my numbers.

[tommy246]

I read this and it made me wonder if treatment should begin immediately.  If someone can go this long without their CD4 being detectably low, it would make more sense to wait on treatment because of the long-term damage to vital organs and the earlier development of immunity to the drugs by the virus.  I guess it depends on the initial results of CD4 and VL.  Another factor to consider is how more advanced the medications will be in the years to come (hopefully) and if we knew that would be the case then it would prolly be best to start treatment early to maintain our immune system and not take any chances.  Now that I've sort of come to terms with being positive, this has become one of the single most important questions I've been pondering.  I also would like to say thanks to all the people on here.  I just found out yesterday and you guys have really been an inspiration.  I go for my ID Doc appt on Dec. 9th.  Wish me luck.  I love you all and wish you the best!!  HAPPY THANKSGIVING 

Modern drugs wont damage your organs generally speaking they are a lot better than the ninetys with very few side effects and if taken 100% correctly the virus will be non detectable and not mutate, again in most cases
Hiv will do alot more damage than modern meds.

[tommy246]

Just wanted to add here in europe they raised the start meds barrier this week to 500 -350 the usa is set to follow shortly.

[leese43]

Just wanted to add here in europe they raised the start meds barrier this week to 500 -350 the usa is set to follow shortly.

Interesting... any links on that please?

[veritas]

leese43,

Latest european guidelines, tommy246 is correct -- USA to follow soon:

http://www.europeanaidsclinicalsociety.org/Guidelines2009/G1_p14.htm

v

[megasept]

Modern drugs wont damage your organs generally speaking they are a lot better than the ninetys with very few side effects and if taken 100% correctly the virus will be non detectable and not mutate, again in most cases
Hiv will do alot more damage than modern meds.

Better? Absolutely, but "Modern" drugs DO seem to have an adverse affect on vital organs including heart, kidneys, and liver. Not as rosy as you state. I wish I was wrong, because I am on meds.

HIV also takes its toll, for instance, on the heart. Even my arthritis may have arrived years earlier due to long-term HIV. I cheerfully view this as a "Damned if you do, damned if you don't" puzzle. There are numerous ongoing studies on these and similar issues.

Illness makes compromises necessary.

Happy Holdays All,
Steven (aka    megasept)

[tommy246]

Hi, steven as i said in my thread i was speaking generally even an aspirin has side effects for certain people. With the eu raising the when to start meds guidelines and the usa set to follow suit very soon   it sends  a very clear message to me that modern meds are well manageable nowadays.
The renowned Dr gallant from the johns hopkins website clearly states that he would start anybody who had access and adherence on meds regardless of there cd4 count . There is an increasing school of thought that hiv can do lots of damage long term if left untreated to long, immflamation etc.
The bottom line is its a personal choice and opinions vary i also toiled with this scenario but the more i read the more i believed in starting with decent numbers ,especially as i am 49 and i think the damned if i do ,dammed if i dont situation is more a thing of the past.

[megasept]

Hi, steven as i said in my thread i was speaking generally even an aspirin has side effects for certain people. With the eu raising the when to start meds guidelines and the usa set to follow suit very soon   it sends  a very clear message to me that modern meds are well manageable nowadays.
The renowned Dr gallant from the johns hopkins website clearly states that he would start anybody who had access and adherence on meds regardless of there cd4 count . There is an increasing school of thought that hiv can do lots of damage long term if left untreated to long, immflamation etc.
The bottom line is its a personal choice and opinions vary i also toiled with this scenario but the more i read the more i believed in starting with decent numbers ,especially as i am 49 and i think the damned if i do ,dammed if i dont situation is more a thing of the past.

Actually you raise 2 different conflicting points of view, the "renowned Dr. Gallant" and the EU and USA "when to start" guidelines. You report that Dr. Gallant rejects the guidelines altogether. The majority of specialists do not. Mine have advocated something like the guidelines beginning a couple years before these were the guidelines. That is not the ultimate proof of treatment efficacy. But not so easy to dismiss, either.

We will continue to respectfully disagree.

And yes, Aspirin affects everybody (very quickly, too) which is why I don't always take my 81 mg a day for heart disease prevention.

-Steven (aka  megasept)

[tommy246]

Well as i sad last week the dhhs have followed europe and raised the start meds guidelines to 500cd4 this week stating that one of the reasons is meds are alot more effective and  better tolerated now ,and another reason is of evidence growing against  the damage untreated hiv can do. Half the panel  of experts actually wanted meds to start above this level .

[CallMeSid]

Zorro62 --  I just received the PM you sent me back in January.  I can't send PMs on this site.  If you'd like a reply from me, please include an alternate way (e-mail address?) in the next PM you send me.  To briefly answer your questions:  (1)  I have no real respect for my doctor and he's moved to a new practice and I don't think I'll be seeing him again and he really hasn't chimed in on the viremic controller/LTNP question; (2) He hasn't mentioned meds and I told him early on that I don't know that I'd take them if/when we got to that point.  Basically, I'm waiting and watching.  I need to find a new MD I can work with.

[blondbeauty]

Yes, me. I think it was and excellent decision.

[madbrain]

Yes, me. I think it was and excellent decision.

Nice. How long did it take for your CD4s to double ?

[poztoo]

I seems some here have rather unique numbers. I've heard when newly infected the VL is very high, and Cd4's might take a dive because of that. After that, the VL stabalizes as the Jymph nodes are activated to produce antibody. Meanwhile, cd4's usually return but plateau at around 500-700 for years. A CD4 around 500, although still low normal, is "suspicious" re HIV, other factors matching diagnosis. My CD4s hovered between 400-700 for many years. VL changed from test to test also.

The ideal goal of Haart is a non-detectable viral load (<50).
Presently NIH guidelines state one should start HIV drugs below 500.

"It’s time to start treatment if: • you have severe symptoms of HIV infection or are
diagnosed with AIDS • your CD4 count is below 500 cells/mm3 (especially below
350 cells/mm3) • you are pregnant • you have HIV-related kidney disease • you are being treated for hepatitis B
Some research suggests that it may be helpful to start treatment early (when CD4 count is above 500 cells/mm3). You may want to discuss the risks and benefits of starting treatment early with your doctor." Dec.2009 "AidsInfo"

However, when seroconversion has been few weeks old, I would probably wait to see at what numbers there is stabilization.

One of the big reasons earlier recommendations were to wait for lower CD4's was because of much fewer options in drug combo's. Now, there are many more classes and different drugs. It's always been the case that side effects are milder at higher CD4 levels. Furthermore, we now know HIV hides in more places in the body. With that info, I see no reason to wait.

It is akin to waiting on a malignant aggressive tumor before treatment. It's probably always better to treat early. Of course, not everyone can deal with the treatment. Some are drug addicted, alcoholic, have adherence issues, or other conditions. If so, they maybe MUST wait. But, I doubt it's ever best.

[poztoo]

Oh, BTW, my present regimen has kept me none-detectable 4 years and my cd4's above 1000. In the last 2 years my CD4's were above 1500 untill most recent, which was 1150.

I've had some conditions which are thought to be related to the drugs. But I've been on one regimen or another 15 years or so. Been pos 24 years.

[viajan0917]

I started meds with a CD4 count of 676 (higher than most people I've talked to)
After 4 weeks on meds (Isentress and Truvada) my CD4 count went up to 925 and VL down to 192 (from 71,000)
I have recently hit the 8 week mark since on meds and VL is now down to 62. They did not test for CD4 at the 8 week mark.
I have no regrets with starting the meds and experienced zero side effects

[madbrain]

poztoo,

One of the big reasons earlier recommendations were to wait for lower CD4's was because of much fewer options in drug combo's.

Not really, side effects and cost vs benefit were the biggest reasons.

Now, there are many more classes and different drugs. It's always been the case that side effects are milder at higher CD4 levels.

Interesting statement, do you have any evidence for it ? I was unable to find any kind of research on people starting meds above 500 CD4, much less data about side effects.

Furthermore, we now know HIV hides in more places in the body. With that info, I see no reason to wait.

It is akin to waiting on a malignant aggressive tumor before treatment. It's probably always better to treat early. Of course, not everyone can deal with the treatment. Some are drug addicted, alcoholic, have adherence issues, or other conditions. If so, they maybe MUST wait. But, I doubt it's ever best.

That may be your opinion personally, but I certainly don't think it applies in general. In the absence of symptoms and with good labs, I don't see any reason to start.

I started recently despite good labs due to fatigue that appears to be HIV related. But I do suffer symptoms from meds. Monday and tuesday the nausea lasted all day. I had to pick up some Odansetron to counter it. I go to the lab this friday (3 weeks point) and see the doc a week later.

[BrotherDavid]

Hello,

At the risk of getting involved in a debate based on what I have been reading above, I just wanted to mention to the poster that I started Atripla when my VL was above 400. I am now undetectable and I feel great. (Mentally and physically based on my decision) While I was unsure at first, I just wanted as little of the virus in my body. I am glad I made the decision and hope I stay healthy.

Good Luck! David

[zorro62]

Hey

Since I started this thread, just thought I would give an update. I am a year in now and not started meds yet. Going to get a 2nd opinion soon. My current Dr says the decision is mine on when to start(Given my personality, I would rather the dr make that decision...I am a tad indecisive in many facets of my life

Even tho I dont post much, I am on here a lot and appreciate all the info everyone posts not only to this thread but in general.

Will post again after I see the other dr.

[Ann]

Hi Zorro, thanks for the update.

Your numbers are fantastic! I know I wouldn't start meds with numbers like that. There's a very good chance that you are a long-term non-progressor. I'd like to suggest that you have a read over at the Zephyr Foundation. http://www.zephyrfoundation.org/

Good luck in whatever you decide.

Ann