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Author Topic: Declining CD4 results even while on treatment... really worried  (Read 9626 times)

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Offline lost_boy

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Declining CD4 results even while on treatment... really worried
« on: October 05, 2011, 04:36:47 PM »
Hey all,

Rather annoyed... meant to post with some good news but recent lab results has rather blown that out the water.

There's been a steep decline in my CD4 and % counts, even after almost a year on Atripla. I feel physically fine, no side effects, and I am very concerned as to what may be going on. Stats as follows:

Date / CD4 / % / Viral load
13/11/09   311  26%  1539 (test positive)
14/06/10   215 16%   4360
27/10/10  341  17%  <40 (start treatment, Atripla)
13/12/10  269  22%  <40
21/03/11  216  20%  <40
16/05/11  214  21%  <40
13/09/11  160   16%  <40

At first the doctor thought it was just low CD4 and would eventually rise, but the latest result has concerned him a lot. He is at a loss to explain what is going on, and I am rather scared as far as I understand this is a really odd trend. The treatment is obviously supressing the virus, but something else is going on. They've taken a blood test to search for other things (TB was mentioned as a possibility!! :( or possibly lack of bone marrow??) and I hear back on Friday.

Has anybody else heard of or experienced similar results? Could it just be that my body isnt responding as well to my treatment as I hoped?

Anyway, it's all very worrying. The bit that's worse is that I've managed to land a job I really want, posted abroad. However, if my CD4 is worryingly low, and say I have to start treatment for something else (I don't want to think what that may be), I may just have to decline the job. But that would raise loads of awkward questions at work. I'm feeling in a real bind.

Any input welcome...
« Last Edit: October 05, 2011, 04:42:36 PM by lost_boy »

Offline newt

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Re: Declining CD4 results even while on treatment... really worried
« Reply #1 on: October 05, 2011, 06:17:09 PM »
Assuming a non-HIV cause (eliminated by tests , obviously...) get of an NNRTI/NRTI combo ie Atripla and on to something else.This will probably help. In extremeis get of the NRTIs altogether.

- matt
"The object is to be a well patient, not a good patient"

Offline eric48

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Re: Declining CD4 results even while on treatment... really worried
« Reply #2 on: October 05, 2011, 06:17:36 PM »
Hi,

Your post calls for a serious and documented, educated answer.

Midnight my time, I am not going into that... Just to tell you we are with you and,while the situation required attention, you should remain hopefull.

You will get a few advise below this post of mine. Fine...

On top of the several advise you may get in this thread and, may be, follow (adherence, more frequent lab,, etc.), there is one that you may want to include in your strategy towards a change in trend.

This may come out of the blue and I got this from somewhere else. (and I can not recall the rationale for it) , but it will do you no harm.

If (and only if) you can stand it , you may want to include to your current meds a significant amount of aspirin (such as 2000 or even 3000 mg/day) for, say, 2-3 months, then do a retest and see...  

Cooling the general inflammation 'may' help easing the break that is currently holding back your immune recovery.

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline newt

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Re: Declining CD4 results even while on treatment... really worried
« Reply #3 on: October 05, 2011, 06:17:59 PM »
PS - I'd still take the job
"The object is to be a well patient, not a good patient"

Offline lost_boy

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Re: Declining CD4 results even while on treatment... really worried
« Reply #4 on: October 08, 2011, 04:11:57 AM »
Ok, so I got blood test results back. Nothing untoward (thank god). And a very slight increase:

05/10/11  220  17%  <40

But I still don't understand why my CD4 has failed to rise, especially when there are such dramatic improvements in other people. I tend to take my meds at roughly the same time before I go to bed... is it just because for whatever reason, my body isn't responding well? Is a long-term thing, and maybe I'll start to see results in two years, three? I'm just really puzzled :(

Offline ad2san

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Re: Declining CD4 results even while on treatment... really worried
« Reply #5 on: October 08, 2011, 08:45:03 AM »
yep, come abroad  :)

I feel frustrated from time to time as well when I see footnotes in the posts with CD4 800 and above when I keep navigating between 400 and 600 since I started the therapy. I am doing well that's what matters.

I fully agree with Matt, if it goes on like this you still have other options than Atripla.
Feb   2009 CD4 358 VL 2000 16%
May  2009 CD4 305 VL 3069  14% <---- Started TVD+ATZ/r
Jul  2009 CD4 512 VL <50   18%
Jul 2010 CD4 418 VL <50 24%                     
Switched to Kivexa (Epzicom) + Norvir + Reyataz (due to sleep problem)
Aug 2010 CD4 606 VL <50 25%
Jul 2011 CD4 494 UD 23%
Switched to Kivexa (Epzicom) + Viramune XR (due to kidney problems)
January 2012 CD4 564 UD 31%
October 2012 CD4 684 UD 29%
January 2013 CD4 594 UD 26%
Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT
Feb 2013 CD4 699 UD 28%
May 2013 CD4 385 UD 28%
July 2013 CD4 CD4 636 UD 25%
Oct 2013 CD4 588 UD 39%
Aug 2014 CD4 639 UD 25%

Offline eric48

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Re: Declining CD4 results even while on treatment... really worried
« Reply #6 on: October 08, 2011, 06:24:12 PM »
Hi,

Viral load dynamics and CD4 recovery dynamics are 2 different things (and not directly related)

some people have a faster increase, some a slower, some have a higher increase some a minor increase.

The reason why is not fully understood

Some people are called slow-low which is good enough.

The medical condition that researchers are working on is the immunologic non-responders (or poor responders)

If my memory is correct, one is deemed a  immunologic non-responder (at least in the hospital I go to) if the CD4 increase is less than ? (I do not remember) AFTER 3 years of treatment.

In other words, while I understand your anxiety and sympathize, it is way too early to get over concerned.

The research on the condition you are fearing (immunologic non-response while being a good virologic responder) (and do not have at this time on the time line of your treatment) is 2 fold:
- see if a regimen change can improve things
- see if adding one drug can improve things (this is called intensification)

So far, none of these 2 approaches have yielded results ( you can be sure that Big Pharma would advertise it big time if there was a solution)

CD4 recovery is, statistically speaking, usually a 2 step recovery, with an initial increase, then a plateau spanning between month 12 and month 24 (centered on month 18), then a second phase increase.

This is why it can not be said that there is definitively no increase until year 3.

Yet, your doctor is right to consider that another condition could be the cause.

One suspected culprit is the inflammation due to something else (or due to the infection per se, independently of VL), which is why some individuals have tried aspirin.
No formal clinical trial has ever been conducted to explore this option.

I personally think it is worth trying (cost less and not hazardous).

I can (as far as I am concerned) say that after 4 months of aspirin intensification my numbers have improved, but I would not derive any conclusion since a single patient experimentation has no scientific validity.

You are no in a red danger zone but , may be in an orange, mild risk, where being a bit extra carefull about not catching anything else (overseas travels, unsafe practices, etc)  might be considered.

Cheers

Eric

Note: on top of memory, I think I read somewhere that people with a fairly low ( < 10.000) pretreatment VL also have a slower immune recovery.
« Last Edit: October 08, 2011, 06:33:05 PM by eric48 »
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline newt

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Re: Declining CD4 results even while on treatment... really worried
« Reply #7 on: October 09, 2011, 03:28:43 PM »
I'd go ahead and try sommat different. An integrase inhibitor/PI based combo might deliver +50 CD4 count. This said, what Eric says about time is important.

- matt
"The object is to be a well patient, not a good patient"

Offline lost_boy

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Re: Declining CD4 results even while on treatment... really worried
« Reply #8 on: October 10, 2011, 07:58:16 PM »
Eric, Matt,

Thanks for your considered responses. As you say, it is a long game, and I guess I was just a bit panicked as my CD4 isn't especially great. But we can see how it goes, there's plenty more options. Something to monitor but not the end of the world - I guess I'm "lucky" enough to be a slow gainer!  :P

I'm meant to be taking an overseas posting for a while, but given that my doctor didn't think that I shouldn't go (even when I pressed him!) I suppose it's reassuring. I just want instant gains, and a "safe" CD4, dammit! I've been given some antibiotics due to the low count, just to be on the safe side. Hopefully that'll make a bit of diference and unblock whatever is causing the hold-up :)

And if in 6 months I'm still hovering around the same mark, I'll consider my options then. Viral load is in check, and that's one of the more important things.

Offline eric48

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Re: Declining CD4 results even while on treatment... really worried
« Reply #9 on: October 10, 2011, 09:39:07 PM »
Sure ! keep us posted !

No one is a HIV doc on this forum (as far as I know) but people care for each other !

Cheers! Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline lost_boy

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Re: Declining CD4 results even while on treatment... really worried
« Reply #10 on: November 24, 2011, 07:00:08 PM »
Hey guys,

Quick question about being an immunological non-responder. I understand it's relatively common (15% or so of those on treatment), whereby VL goes down but then so does CD4. However, is that "it" in terms of treatment, or can you try other combinations? Does that work and help curtail the decline, or is it still a very inexact science?

Just having a nervy moment - do non-responders have a much lower life expectancy than those who respond well? It's funny, because in all the literature available on most of the big websites, there's very little said on the topic, or what, if anything, can be done.


Offline newt

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Re: Declining CD4 results even while on treatment... really worried
« Reply #11 on: November 24, 2011, 09:31:51 PM »
Quote
is that "it" in terms of treatment, or can you try other combinations?

No it isn't "it." You can try other combinations and time is a great immune system restorer. Plus treatment will be different in 5 year's time.

I bet (and would put money on it) within your lifetime there will be a treatment which give complete immune restoration, if not elimination of HIV from your body. << taking bets now

- matt
"The object is to be a well patient, not a good patient"

Offline eric48

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Re: Declining CD4 results even while on treatment... really worried
« Reply #12 on: November 25, 2011, 05:23:37 PM »

I bet (and would put money on it) within your lifetime there will be a treatment which give complete immune restoration,...

Agreed!

Cheers!

Eric

NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline madbrain

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Re: Declining CD4 results even while on treatment... really worried
« Reply #13 on: November 26, 2011, 05:17:38 AM »
There are a lot of genetic components that affect individual response to HIV. We still don't know what they are.
You also don't know what your normal CD4 was prior to HIV infection. Genetics also affect this. A normal level is considered to be at least 500. It's possible you had a low CD4 level to begin with.

Unfortunately, nobody gets their CD4 tested prior to having HIV. So you don't have any way of knowing that.

However, you may want to look at results of old CBC tests, pre-HIV, if you have any. Look at your total white blood cell counts , and compared them to the total in your current CBCs. If the totals are in the same range, then perhaps it is not so worrisome.

Definitely have your doctor look for other medical conditions.
If you have no drug resistance, maybe a regimen change wouldn't hurt either.

I would also suggest exploring additional (not alternative) supplement options. With your doctor's approval of course. Though he may not know much about them. They may not necessarily improve your CD4, but they should still be beneficial to your health. My main recommendations in that area are :

- If you aren't taking a multi-vitamin already, start taking one.

- Have your vitamin D level checked. For most people, it is low, and vitamin D supplementation is advised. The HIV meds deplete vitamin D in the body. If you are seriously deficient, you will likely need quite a bit more than the 400 IU "recommended" daily dose of vitamin D. I take 11,000 IU per day.

- Since you are on Atripla, how are your triglycerides ? Your doc must be checking you for those. You may want to take some Omega-3. Even if your triglycerides are OK, omega-3 have benefits on mood too.

There are a lot of other supplements on the market. None that can provably increase CD4, unfortunately.
I tried 25 different supplements before I went on meds. My CD4 were never low, though. They remained stable.
I still have many unsealed bottles that have about 1 yr to go. I don't mind parting with most of them. PM me if you are interested in going that route and I will give you a list of what I got left.

Offline John2038

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Re: Declining CD4 results even while on treatment... really worried
« Reply #14 on: November 26, 2011, 06:32:32 PM »
Hi lost_boy,

Discordance, when observed beside others conditions, happen with low nadir (<350).
Activation (ongoing inflammation), linked to cells death, may expalin of virological success but immunogical failure. PIs known as more friendly when it comes to cells apoptosis, can provide paradoxal result with low nadir.

You may want to investigate the immune activation route (and so, cells premature death) and discuss with ur doc the options u may have to improve ur conditions, investigating others causes, such as HCV, active CMV, residual HIV viraemia (despite UD), metabolic syndromes, organ disease, etc.

I would personnally, in the meantime, sorry for such laughable advices, give a try to K-Pax supplemtn and let ur doc advices for all and the rest. Patience is also a must, satisfactory immune reconstitution may take years, despite require close follow-up. Bactrim is also a good idea.

John

Offline eric48

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Re: Declining CD4 results even while on treatment... really worried
« Reply #15 on: December 01, 2011, 08:43:24 PM »
Discordance

In this case falls into a clinical classification named immulogic non-response

Where I live, the local guideline would classify as  immulogic non-response if the CD4 increase is below a certain value (which I do not recall) AFTER 3 YEARS of (otherwise successfull) treatment.

So, please give it time...

While I believe it should be possible to twick one's treatment for better results, I do not recall that there is a medically accepted trick at this point of time.

Hope this helps

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline lost_boy

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Re: Declining CD4 results even while on treatment... really worried
« Reply #16 on: April 11, 2012, 01:39:05 PM »
Hey all,

So, I thought I would resurrect this thread rather than start a new one!

I got my latest labs back today... A small improvement, but not great. Large delay between tests as I have been abroad.

Date / CD4 / % / Viral load
13/11/09   311  26%  1539 (test positive)
14/06/10   215 16%   4360
27/10/10  341  17%  <40 (start treatment, Atripla)
13/12/10  269  22%  <40
21/03/11  216  20%  <40
16/05/11  214  21%  <40
13/09/11  160   16%  <40
05/10/11  220  17%  <40
06/11/11  129  16%  <40 (go abroad for a few months.. also take antibiotics due to low CD4)
12/03/12  176  16%  <40 (back from abroad)


So I've been on Atripla and the doctor admits that he hasn't seen a case like this with declining CD4 even while on treatment, which is rather unsettling... he has suggested that instead I change regimen, to
efavirenz (Sustiva) + Kivexa (Epzicom). He hopes that my poor cd4 response may simply be that I'm not responding to something in Atripla and that perhaps a regimen change would produce a good response. What are your thoughts on this? He says I can go back to Atripla if I have side effects with the Kivexa - is this true?

He also said that I could probably be fine to continue on Atripla, but as I was concerned and alarmed he has suggested this change... hoping for some gains!

Thanks for any advice, this is a bit of a hurried post!


             

Offline buginme2

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Re: Declining CD4 results even while on treatment... really worried
« Reply #17 on: April 11, 2012, 02:21:57 PM »
Changing off Atripla is a rational decision however he is leaving you on Efavirenz and just swaping out Epzicom for Truvada?  It seems that leaving you on Truvada and changing out the Efavirenz for an Integrase Inhibitor or PI would make more sense (PI's and II's could offer you a small increase in CD4's).  Whats his rationale? 


Don't be fancy, just get dancey

Offline ad2san

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Re: Declining CD4 results even while on treatment... really worried
« Reply #18 on: April 11, 2012, 03:52:17 PM »
hi, take it easy for KIXEVA, I had no side effect at all .... Your doctor must screen you prior for the hyper sensibility HLA-B*5701 and that's it. No more farting !  ;D
Feb   2009 CD4 358 VL 2000 16%
May  2009 CD4 305 VL 3069  14% <---- Started TVD+ATZ/r
Jul  2009 CD4 512 VL <50   18%
Jul 2010 CD4 418 VL <50 24%                     
Switched to Kivexa (Epzicom) + Norvir + Reyataz (due to sleep problem)
Aug 2010 CD4 606 VL <50 25%
Jul 2011 CD4 494 UD 23%
Switched to Kivexa (Epzicom) + Viramune XR (due to kidney problems)
January 2012 CD4 564 UD 31%
October 2012 CD4 684 UD 29%
January 2013 CD4 594 UD 26%
Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT
Feb 2013 CD4 699 UD 28%
May 2013 CD4 385 UD 28%
July 2013 CD4 CD4 636 UD 25%
Oct 2013 CD4 588 UD 39%
Aug 2014 CD4 639 UD 25%

Offline eric48

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Re: Declining CD4 results even while on treatment... really worried
« Reply #19 on: April 11, 2012, 05:40:40 PM »
Hi,

I think I read some recent work showing that under the radar replication (say your VL hovers around 30, for exemple) could be a cause.

(source:
http://www.ncbi.nlm.nih.gov/pubmed/22481602.1
Ultrasensitive assessment of residual low-level HIV viremia in HAART-treated patients and risk of virological failure.

(not free access)

Despite the fact that I am not presonnally concerned, I have always found this matter interesting and I read through this type of research (but did not bookmark)

IMHO, what you did is a minor twick since Kivexa and truvada are virologically very close in terms of resistance profile. If (emphasized) the cause is a under-the-radar-replication it can happen in 2 places:
1 - insufficient anti-replication efficacy (creating a safe place for replication at cell level)
2 - anatomic isolated place where the drug does not reach well enough and allows for replication

If my recollection is correct Kivexa has a better penetration in the brains, so reaching out more potential anatomic reservoir might be the rationale (as it addresses case 2) somehow.

If trying to reach better tissue/organ penetration is the rationale, then switching the Sustiva by Viramune might be a next step

I do not recall that they have found a good real answer thus far, except that, apparently a switch to RAL containing regimen is drawing interest.

I have not yet read in details but the following free article seems to review in details this subject :

http://www.hindawi.com/journals/cdi/2012/515962/
HIV RNA Suppression and Immune Restoration: Can We Do Better?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3316511/?tool=pubmed

you my find some clues in there.

Cheers! Eric

NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline lost_boy

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Re: Declining CD4 results even while on treatment... really worried
« Reply #20 on: April 11, 2012, 06:22:12 PM »
Hey, thanks for the responses... the rationale for changing seems to be to figure out whatever's holding back my immune system. If we get a jump in CD4 from switching to  Kivexa, great. If not, then it may be the case of switching the Efavirenz into something else. If neither works, then it may be back to the drawing board!

I'm a little concerned as I gather Kivexa is far less generous when it comes to the window in which you can take it (an hour or two, as opposed to quite a few for Atripla). Is this right?

And also, is it right taking this would not prevent me from returning to Atripla, provided my viral load does not rise?

The doctor hasn't done a very good job of explaining why a change might do the trick, beyond "it could just be something to do with your response to Atripla". So a bit better explanation from all of you has been helpful. I personally thing he's just stuck... he says in the 1000 or so patients he has treated, he has never seen a response like mine :( Aren't I the lucky one!

Offline eric48

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Re: Declining CD4 results even while on treatment... really worried
« Reply #21 on: April 12, 2012, 11:42:25 AM »
Apparently this is fairly uncommon and tricky.

Seems like yours 'dynamics' are 'different' see for exemple your low VL to start with.

That would mean that:
- not much replication with a given CD4 cell
- no rapid turn over of CD4 (infected CD4 , if detected, are 'kill within a day and leave their VL behind them as a trace of their (short) existence.

Most people see a rapid increase of their cD4 population, since as HAART start (and works...) the lifetime of a given CD4 goes rapidly from 1 day to 15, and then back to its original 6 months...

If your dynamic is slow (for an unknown reason), oneday the count will go up and you may (falsely) attribute to the latest switch.

Since you are UD now for a while I do not know if Kivexa really requires a tight timing... But, maybe, adhering to a more strict timing may help in leaving not a single chance for under the radar replication.

I take it on to of the hour. Lost of people seem to prefer bedtime. I, personnally can stand the morning dosing, then , I do not have to worry about it all day...

Cheers

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline wylidas

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Re: Declining CD4 results even while on treatment... really worried
« Reply #22 on: April 22, 2012, 10:57:36 PM »
lost_boy-  I happened to read through your thread and I wanted to chime in on something. I, too, have had fluctuating CD4 despite being healthy and UD for years. Mine bounces between 250-500, but most recently it has hovered and stayed in the 300 range. It also used to vex me when I see all these posts with CD4 600-1000,sometimes higher. My doctor has never been concerned about it, and I take Epzicom/Reyataz/Norvir, which are protease inhibitors.

I started Complera today to see if it may help with other issues I had had going on, and I will be curious to see if my CD4 raises in 4 weeks when I do my first labs. But, one other thing a close friend of mine always mentions is how much good aerobic exercise can raise our CD4, and honestly I am NOT good about exercising.
So are you active? It is worth a real shot to try and would provide loads of other health benefits. I have just recently joined a YMCA to be able to swim year round.
Diagnosed + in 2006.
Atripla in 2006 (Bad dreams, nervous system reaction after a few weeks. Discontinued.)
Epzicom/Reyataz/Norvir October 2007 - February 2012 (anxiety and elevated BP primary s/x)
UD VL <30
CD4 - fluctuates between 250 - 500 with 25%+
Discontinued meds in February 2012 (due to adherence issues after detoxing from Ativan)
March 2012 - CD4 296, VL 120
4/22/2012 - Started Complera
5/1/2012 - Discontinued Complera, began monitored drug holiday
7/3/2012 - VL 55,000; CD4 211 - started Bactrim
8/5/2012 - Began Truvada + Isentress

Offline lost_boy

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Re: Declining CD4 results even while on treatment... really worried
« Reply #23 on: April 23, 2012, 07:32:23 PM »
Eric, I take it before bed... because normally I tend to sleep in and get up when I feel like it, and stay late at work to make up for my laziness!  ::) However I am generally awake at midnight before bed, and it's an easy time to remember.

No side effects on the new combo, which is good. As you say, will be unclear if I get good results next time if it's the new combo, or if the trend was just going that way, but shall wait and see.

Wylidas, thanks for your concern... I am mostly upbeat though as a low Cd4 is not the end of the world, and my virus is suppressed, so that's the main thing. The doctor is unconcerned which I guess is reassuring, but I just want to have a nice high number, haha! :) I actually do a lot of aerobic exercise - I like to run, I practice martial arts, hoping to get my black belt soon but work keeps interrupting potential grading dates, grr. So I don't feel physically unhealthy in the slightest, so really I think it's "all in my head" a bit. Like so much of this disease. Bah humbug!  :P So really, best not to worry, as I have many years I could waste worrying left!

... I really should swim more though :)


Offline michaeljon2001

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Re: Declining CD4 results even while on treatment... really worried
« Reply #24 on: May 14, 2012, 11:44:31 AM »
Hello all, I am new to this here and wanted to say Thanks for all of the info on this topic. I was diagnosed at the end of December as poz, but when meeting my ID doc at the end of January it was learned that my cd4 count was a mere 24...with pcp pneumonia... fun times. anyways that was then.. this is now.. after 4 weeks of treatment *Epzicom/Norvir/Prezista.. my cd4 shot up to 284 and my vl went from almost 300,000 to start to near 3,000. Fast forward 2 more months to this past week and the cd4 took a dive down to 178...not sure what my vl is at this time. I dont have access to that on my clinical record online. This particular discussion helped talk me off a ledge so to speak Sunday morning  ;D  I know understand why my Dr told me that we were not going to focus so much on the cd4 number and really go after the vl. I will add more once I meet with my Dr on Thursday, but wanted to take a moment and say thank you!!
Michael   ;)
Like a bridge over troubled water.... I will lay me down... :)

Offline eric48

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Re: Declining CD4 results even while on treatment... really worried
« Reply #25 on: May 15, 2012, 07:36:19 PM »
So really, best not to worry, as I have many years I could waste worrying left!

Funny... a doc at my yearly checkup (not my usual doc) brought this up in and interesting fashion :

She said you are '50: a 50 year old male has, in average,  30 years ahead of him.
If you waste 3 years in (emotionally) getting over this, then you're waisting 10% of good , valuable time

That was kind of strange, but, not untrue

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline lost_boy

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Re: Declining CD4 results even while on treatment... really worried
« Reply #26 on: May 16, 2012, 08:05:52 PM »
Michael, glad we could all be of help. Hope you are doing well too, let us know how it goes!

Eric, you said you had a yearly check-up... is that the case? I hope I can get to something similar, as I find even every 3-4 months a bit of a downer and inconvenience (!). But then again, reassuring to know I am being checked frequently, also I think it is just general health policy in the UK.

Offline Ann

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Re: Declining CD4 results even while on treatment... really worried
« Reply #27 on: May 17, 2012, 07:54:32 AM »
Lost, most clinics in the UK will allow you to go every four or six months if you're stable on meds with an undetectable viral load for a couple years or so. Ask your doctor about it next time you go in for an appointment.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline lost_boy

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Re: Declining CD4 results even while on treatment... really worried
« Reply #28 on: May 17, 2012, 11:35:28 AM »
Cheers Ann. I think my doctors have been great with me so far, in that appointments have ranged 3-6 months, and my viral load has been undetectable so they know I am being adherent and a 'good egg' :P I think they just want to keep monitoring given my low CD4 count, and also I am travelling abroad a lot. Which is sensible enough, means I feel a bit more secure too! In future though once my work pattern is more stable I hope to have less appointments too.

I actually don't mind being abroad given the current rubbish weather, when is summer actually going to kick in?!  >:(

Offline Ann

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Re: Declining CD4 results even while on treatment... really worried
« Reply #29 on: May 17, 2012, 12:29:05 PM »

I actually don't mind being abroad given the current rubbish weather, when is summer actually going to kick in?!  >:(

Lucky you! I can't tell you how fed up I am with this weather. It feels like March - enough already! I can't afford the extra weeks of burning heating oil, so I've got the thermostat way down low and I'm freezing my balls off.

What's that you say? "But you don't have any balls?" Well, exactly. Now you know why! ;D
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline michaeljon2001

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Re: Declining CD4 results even while on treatment... really worried
« Reply #30 on: May 18, 2012, 03:06:49 AM »
So just a fast update.. so my CD4 did drop to 178 from where it rose to 284 after the first 4 weeks. The new results are from the 3 month checkup. Keeping in mind that my cd4 started at 24 in Feb this year. My viral load again started at around 300,000 but as of this checkup it is now down to 219..... SOOOO we will take that as a big win and just monitor the cd4 go forward. My Dr's big point was that my CD4 % barely changed so it didnt drop and my viral load is approaching undetectable that things are working. For me it is a case where I started off so low that it will take time for stability, she also shared with me that the high reading of 284 after 4 weeks was completely out of left field and unexpected.  So that is my latest, I go back in July right around my Birthday...here's hoping for a great Bday gift haha.
Michael
Like a bridge over troubled water.... I will lay me down... :)

Offline Ann

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Re: Declining CD4 results even while on treatment... really worried
« Reply #31 on: May 18, 2012, 07:03:40 AM »
So just a fast update.. so my CD4 did drop to 178 from where it rose to 284 after the first 4 weeks. The new results are from the 3 month checkup. Keeping in mind that my cd4 started at 24 in Feb this year. My viral load again started at around 300,000 but as of this checkup it is now down to 219..... SOOOO we will take that as a big win and just monitor the cd4 go forward. My Dr's big point was that my CD4 % barely changed so it didnt drop and my viral load is approaching undetectable that things are working. For me it is a case where I started off so low that it will take time for stability, she also shared with me that the high reading of 284 after 4 weeks was completely out of left field and unexpected.  So that is my latest, I go back in July right around my Birthday...here's hoping for a great Bday gift haha.
Michael

Hi Michael, welcome to the forums.

Great news about your latest labs. As your doctor says, everything is going in the right direction, although it may take some time for your CD4 to rise and stabilise. You're responding to treatment very well so far, so don't sweat it.

One thing that concerns me though - you said "just monitor the cd4 go forward". You should still be having your VL monitored. In fact, it is usually considered the more important number when a person is on meds, as it will indicate whether or not the meds are still working for you.

Please make sure you have your VL measured when you go back in July. And happy extra early birthday wishes! :)

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline leatherman

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Re: Declining CD4 results even while on treatment... really worried
« Reply #32 on: May 18, 2012, 09:43:49 AM »
One thing that concerns me though - you said "just monitor the cd4 go forward". You should still be having your VL monitored. In fact, it is usually considered the more important number when a person is on meds, as it will indicate whether or not the meds are still working for you.
from one michael to another ;D, Ann's really right on this one, so heed her about this. ;)
most people were never tested before they were diagnosed with HIV, so I bet you like everyone else have no idea what your base HIV negative cd4 count was - so there's no telling what number you might reach when your immune system has recovered from losing the HIV and adjusting to the meds.

besides in the long run, two things really matter:
1) the trend over at least 3 tests. Since cd4 counts can vary by up to 100 pts in one day (with the highest counts in the evening and lowest counts in the morning), you can never go by what a single test test. It's always about the "trend" over several tests
2) it's never about how MANY cd4 cells you have but how WELL they work. For example I've lived with <300 tcells for well over 20 yrs and haven't been back in a hospital or even very sick in nearly 15 yrs.

Just as Ann said, getting the VL down to UD, so your immune sys can recover and go back to work, is really the most important thing in defining successful treatment. Best wishes with a continued recover and early Happy bday wishes. ;) :D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline eric48

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Re: Declining CD4 results even while on treatment... really worried
« Reply #33 on: May 18, 2012, 05:49:59 PM »
Eric, you said you had a yearly check-up... is that the case?

Blood work + doc visit every 4 months
out of which one must be done at hospital: they will include other surveillance like cardio, neuro-cognitive, and, hummm, so other more embarassing stuff (which can be otherwise fun, but not in that setting).
I beleive they do it at hospital for 2 reasons:
- cohort data maintenance
- they will remove/retrieve 'tricky' cases from private clinic practice (private clinic pratice and monitoring has been introduced on an experimental basis only recently) for 'expert' monitoring

Hope this helps understand how things are been scheduled for me

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline michaeljon2001

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Re: Declining CD4 results even while on treatment... really worried
« Reply #34 on: May 19, 2012, 01:59:44 PM »
Thanks Ann and Michael... :)  So yeah all great points and very valid :) Now I just want to mention I am not sure where you got the idea we werent monitoring the VL lol. I went back and looked and couldnt find where I mentioned that. I think I may have caused confusion when I just was speaking about cd4 in my last post. I didnt lump vl into that :) In my previous post I had said we were really putting our focus on the Viral Load as that is the main indicator of how things are working but monitoring the cd4 count because it is fluctuating and will for a lil while. So no need for concern about VL. that is the Main thing we have focused on as well as cd% that remained about 20% as of last visit. it started at 6%. Hope you all have a FABULOUS weekend :)
Like a bridge over troubled water.... I will lay me down... :)

Offline Ann

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Re: Declining CD4 results even while on treatment... really worried
« Reply #35 on: May 20, 2012, 09:01:24 AM »
Michael, it was because you said... "SOOOO we will take that as a big win and just monitor the cd4 go forward." It sounded like you meant you were only going to monitor your CD4s going forward. I'm glad to hear that's not the case. :)

That's a huge increase in your CD4%! Hope it keeps going up for you. As it tends to be the more stable number (the absolute CD4 number can fluctuate by as many as 100 points in the course of a single day), it can be a more reliable indication of how your CD4s are doing.

Hugs,
Ann
xxx
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline miked

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Re: Declining CD4 results even while on treatment... really worried
« Reply #36 on: May 21, 2012, 01:36:47 PM »
I may have missed it, but be sure that genotyping is done on the virus.  Atripla may not be the drug for you.  That being said, I have had problems with declining counts and problems keeping my viral load undetecable for years (I have been + since 85 and started meds in 87).  In 2006, we finally decided to hit it with the big bugs.  I was switched to Truvada, Norvir, Prezista, and Isentress.  In addition, I did 90 days of Fuzeon (an absolutely horrible injection).  We were finally able to keep the viral load undetectable with a very small increase in T cells.  I added Selzentry to the mix about a year later.  I've still had problems keeping my T cells up, but they are relatively stable and the viral load has remained undetectable since 2006.  However I have had problems with KS.

Offline poodlelover

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Re: Declining CD4 results even while on treatment... really worried
« Reply #37 on: July 06, 2012, 11:13:29 PM »
Today I had my 6 month visit and I to am having the same issues. I switched to Agrippa 2 years ago because he thought it was time to get off the older meds. Well, every 6 months since then my cd4 has been lower I started with 1000 and now it's down to just below 600. He is puzzled and so am I.  If they drop again he wants to switch me to a protease inhibitor.
Connie

Offline roji_t

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Re: Declining CD4 results even while on treatment... really worried
« Reply #38 on: July 26, 2012, 01:25:17 PM »
Hi all!
After reading through almost all the replies(Yes, i didn't read the last few :P), I thought i could add in something.

Now, what you are seeing, that is the decrease in cd4 is something i've observed with my relatives as well. From 340 to 320 to 300 in a span of 18 months. Does it concern me? yes. it does. Now another factor that usually doctors consider is the cd4/cd8 ratio or the cd4% in itself.
So maybe you need to have a look a that too.
In the case of my relatives, it's worrisome. 0.12 to be exact. And the cd8 count is ridiculously high.
After reading through, I'm still not sure of the cd8 count significance.

Anyway,
The point is, fluctuating cd4 is not as uncommon as you might believe.
Purely genetics. And a hell lot of luck :P

Cheers.

Offline Ann

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Re: Declining CD4 results even while on treatment... really worried
« Reply #39 on: July 27, 2012, 05:46:26 AM »

Now, what you are seeing, that is the decrease in cd4 is something i've observed with my relatives as well. From 340 to 320 to 300 in a span of 18 months. Does it concern me? yes. it does.


It shouldn't concern you. CD4s can fluctuate by as much as 100 points during the course of a single day and the fluctuations you report (340 to 320 to 300) are absolutely NOT significant.

When a person is on hiv meds, the important number is the viral load. Provided the VL is undetectable and the CD4s are over 200, there's really no cause for concern.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline madbrain

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Re: Declining CD4 results even while on treatment... really worried
« Reply #40 on: July 27, 2012, 07:31:04 PM »
Today I had my 6 month visit and I to am having the same issues. I switched to Agrippa 2 years ago because he thought it was time to get off the older meds. Well, every 6 months since then my cd4 has been lower I started with 1000 and now it's down to just below 600. He is puzzled and so am I.  If they drop again he wants to switch me to a protease inhibitor.

I assume you meant Atripla, there is no such med as Agrippa.
600 is still a respectable CD4 count. What is your CD4 percentage ratio ? That may be a more interesting number to look at. Your CD4 ratio should go up since starting meds.

I am going to disagree with Ann that the VL is the only thing to worry about, if the CD4 really continues to drop constiantly and approaches below 200, that would definitely worry me. It may indicate something else wrong But you are not there yet.

Your doc is right that a PI may do better than atripla with the CD4 count. This was the case with my bf when he switched away from Atripla to Truvada + Reyataz + Norvir. However, this was a more difficult regimen with the liquid Norvir having to be kept cold. It is once a day still, but it is not one pill. He ended up switching back to Atripla. His CD4 do vary, but they are still lower than yours even after over 5 years of meds, they are in the 400 to 550 range. He started meds at CD4 230, though, not 1000. 230 was his first CD4 count, 6 months after his last HIV negative test.

Offline leatherman

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Re: Declining CD4 results even while on treatment... really worried
« Reply #41 on: July 27, 2012, 07:59:30 PM »
However, this was a more difficult regimen with the liquid Norvir having to be kept cold. It is once a day still, but it is not one pill
thank goodness, Norvir is a nice compact white tablet these days - no liquid, no gelcap. ;)
I only point this out because the refrigeration problem is not a problem nowadays, so a switch to R/T/N could be considered as a possibility. ;)
leatherman (aka mIkIE)


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Offline Rockin

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Re: Declining CD4 results even while on treatment... really worried
« Reply #42 on: July 30, 2012, 12:36:31 PM »
Its funny, I see a lot of people complaining about Atripla's side effects here. I used to be a little jealous of people taking it, as it's only 1 as opposed to the 5 I take, but at least mine don't give any side effects at all other than "yellow eyes" sometimes.

And honestly...the time it takes to swallow 5 pills or 1 pill is pretty much the same. And you can always buy a pill dispenser to make things even easier.

Offline buginme2

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Re: Declining CD4 results even while on treatment... really worried
« Reply #43 on: July 30, 2012, 01:04:39 PM »
Its funny, I see a lot of people complaining about Atripla's side effects here. I used to be a little jealous of people taking it, as it's only 1 as opposed to the 5 I take, but at least mine don't give any side effects at all other than "yellow eyes" sometimes.

And honestly...the time it takes to swallow 5 pills or 1 pill is pretty much the same. And you can always buy a pill dispenser to make things even easier.

The vast majority of people taking Atripla do not experience any side effects.  Ive been on it for quite awhile and have no side effects.  Everyone is different.
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Offline Rockin

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Re: Declining CD4 results even while on treatment... really worried
« Reply #44 on: July 30, 2012, 03:28:08 PM »
The vast majority of people taking Atripla do not experience any side effects.  Ive been on it for quite awhile and have no side effects.  Everyone is different.

Well that's the impression I'm getting from some threads here. Of course I'm aware that those might represent a very small percentage of people taking Atripla.

Offline leatherman

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Re: Declining CD4 results even while on treatment... really worried
« Reply #45 on: July 30, 2012, 04:32:10 PM »
Well that's the impression I'm getting from some threads here. Of course I'm aware that those might represent a very small percentage of people taking Atripla.
think about this situation for just a moment. This is an HIV support site. Someone having no issues with their meds probably has no reason to visit; however someone WITH issues might stop here looking for help - and hence more people here seem to have issues. Simply looking at the package insert for any medication, which is filled with nice scientific research, shows that very few people actually have issues. AM just gets more than it's fair share of the tiny percent of people with side effects , and less than it's fair share of the much larger percent of people with no side effects.

Not to mention, just look at that member count over there. Pretty tiny compared to how many people actually have HIV. It's an even smaller percentage when you realize those are mainly people with internet access - which leaves out a lot of the poor. Then if you check into members stats, you'll see that not all of those people even post. So the posts we read here of people having issues are just a teeny tiny non-representative portion of the people infected with HIV.

for example, from the Atripla PI (http://packageinserts.bms.com/pi/pi_atripla.pdf), we can see that that vast majority of side effects happen to fewer than 10% (which means a huge 90% don't have many or any of these issues!!), and most of these are temporary short-term issues that happen while adjusting to the meds, and HIV VL lowering.
leatherman (aka mIkIE)


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Offline Miss Philicia

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Re: Declining CD4 results even while on treatment... really worried
« Reply #46 on: July 30, 2012, 04:52:42 PM »
I think the issue is more like Atripla shows 10% having side effects whereas newer all-in-ones are going to show 5%. So while it is true most (90%) do not have any issues, it's still a significant number when compared to other regimens, including the other current first line treatment, non-all-in-ones (though I'm not going to waste the time to dig up the numbers).

And it's also the nature of the side effect one gets on Atripla, that being CNS issues like severe depression. If you compare that with getting diarrhea on something else, most people will go with diarrhea (which you can pop OTC things to counter effectively). Yes, if you have CNS issue on Atripla it's easy enough to switch, but it seems most people take time to make that decision because the depression can be incremental over a year before getting fed up enough to quit.
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