My T Cells have fallen (to 46) and they can’t get up!

[ByTheBay]

I would appreciate any comments or ideas.  I just got back my results today of my last labs, my CD4 is down to 46 at 10% and yet my VL remains undetectable.  As you can see in my signature file, I’ve never been above 67, and now after having an undetectable VL for more than 4 months, it has fallen to 46.  The 10% remains consistent.

I have a long history of (yearly) negative tests, followed by a positive test and a very low initial CD4. Genotype  shows no mutations causing resistance to any meds.

Meds:  Prezista/Norvir/Truvada  plus Bactrim and Rifubutin to prevent OIs.

Am wondering if there is anything I might be missing, any test or co-condition on top of the HIV which is preventing me from increasing CD4s.  Also wondering if perhaps another combo of meds would work better (but being undetectable is the goal of HAART, right?)

My Doctor is pleased I am undetectable and says my CD4 “may take or long time to recover.”  This last visit he said, “may take a long time or NEVER recover” which I do not take as a good sign.

Luckily, I remain OI free, and feel great.  Take my meds 100% on time as directed.  My 46 T-cells are BUSY keeping me healthy.  I’m just worried my lack of recovery and more worrying, downward trend is something that will put me at risk for OI and death within weeks or months.

Interesting note:  after reviewing my chart, it was thought I might be co-infected with HIV-2, but lab results show I tested negative for HIV-2.

Any ideas?

[Hellraiser]

This makes absolutely no medical sense.  Have you tried using a different lab to get your results (you might need to see a different doctor for this)?  Also how old are you?  Are you a donor organ recipient?  Long term drug users/alcoholic?

[zielwolf]

This makes absolutely no medical sense.  

I agree. I've personally never heard of someone testing negative, then testing positive 4 months later with a CD4 count of only 53. It normally takes many years for CD4s to fall to that level.

Is there another underlying condition compromising your immune system which have affected the results? Is it at all possible you had a very low CD4 count for other reasons? You say your CD4 count is at 10%. That implies your total lymphocyte count is only 460 which is extremely low.

On the other hand, a viral load of 57,000 while fairly high is nothing out of the ordinary and you'd have expected the viral load to have been much higher with such a low CD4 cell count.

I wonder what the percentages of your CD3/CD8 cells are?

I would definitely seek clarification from other sources until I were happy with the explanation, because these are very strange results you have posted. It's your life at stake here after all.

[ByTheBay]

Thanks for the replies.  Here are the answers to the questions:

1) I am 37 years old, male.
2) My labs have been done at a dedicated lab at the largest HIV clinic in San Francisco -- there are over 2,200 HIV patients in my clinic, so I do not think it is "lab error".
3) I have not had an organ transplant
4) Used to drink alcohol on the weekends (a few drinks Friday and or Saturday) but when I went on meds cut out all drinking.
5) Do not use illegal drugs

6) Results of CD3/CD8:

10/30/2009           
CD4 = 67
CD8 = 232
CD3 = 324
CD4/CD8 ratio .29
CD4% 15
CD8% 50

(Do not yet have the current results, as the paper copy comes in the mail, but in person today my Dr. told me CD4 is 46 and CD4% is 10%)

Again, my VL is undetectable for the last 4 months.

The thought was I was perhpas co-infected with HIV-2.  The HIV-1 was supressed and showing as undetectable, but perhaps I had HIV-2 as well which was causing loss of CD4.  Turns out my HIV-2 test was negative (from what I understand HIV-2 is very rare in the US anyway)

My WBC is on the low side at 2.1  (or 2100 depending on how your lab shows it).

All other lab results come back in the "standard range"

I don't know what co-infection or co-condition I could have, and don't even know what kind of doctor to ask or contact.  My case worker says my results are "unusual."

Don't take diet supplements

Never took any perscriptions on a regular basis until HAART

No family history of auto immune disorders

I don't know what else could cause a low CD4 to begin with -- never had any illness like cancer, etc

Any other ideas?  I've never come across a case like mine.  I need to figure out my next steps

[Matty the Damned]

Well looking at your percentage I can see it's stable at 10. This suggests that the change in your absolute count is not clinically remarkable.

It can take a while for a damaged immune system to begin to repair once good viral suppression is in place.

So long as your VL remains undetectable, your regimen is working. Your immune system will take care of itself now the pressure is off.

Patience, my pretty.

MtD

/edit: typo/

[aztecan]

Hey BytheBay,

Yes, your numbers are quite odd. I presume you have been screened for other infections.

The only time I have seen anything like this was when someone was co-infected with another disease such as Hep C.

I agree with Matty. Your CD4s are basically unchanged, so at least they are not getting worse.

It may take some time for your immune system to repair itself. The meds can't help with that, just time and patience.

Just a suggestion, maybe a multivitamin might not be a bad idea.

HUGS,

Mark

[Ann]

Hi BytheBay,

It could be that you had low CD4s to begin with. While the "normal" range is usually quoted as being between 500 and 1000 or more, some (hiv negative) people do normally have CD4s under 500. Perhaps you're one such person.

Mark mentioned hep C and if you haven't already been screened for hep C, you should. Anyone who is hiv positive should be screened for hep C anyway.

Good luck and try to not sweat it too much. You're undetectable and feeling healthy, and that counts for a lot. Stressing over your numbers too much won't help you build new CD4 cells.

Ann

[WillyWump]

 

Don't take diet supplements

Hi Bay,

I agree with Aztecan, You need to be taking a daily mulitivitamin. While this may not affect your CD4's to any great extent it is generally recommended for people with HIV. My doc said any 'ol multivitamin will do. I took my bottle of "Walgreens One a Day for Men" into her ($9.99 for 200) and she said it is fine. Of course if you would like to get Anal about your multivitamin the Nutrition thread is chock full of different Ideas.

Of course, bounce this off your doctor also, he may have specific ideas about which multivitamin to take or not take given your relatively low CD4's

-Will

[metekrop]

I would appreciate any comments or ideas.  I just got back my results today of my last labs, my CD4 is down to 46 at 10% and yet my VL remains undetectable.  As you can see in my signature file, I’ve never been above 67, and now after having an undetectable VL for more than 4 months, it has fallen to 46.  The 10% remains consistent.

I have a long history of (yearly) negative tests, followed by a positive test and a very low initial CD4. Genotype  shows no mutations causing resistance to any meds.

Meds:  Prezista/Norvir/Truvada  plus Bactrim and Rifubutin to prevent OIs.

Am wondering if there is anything I might be missing, any test or co-condition on top of the HIV which is preventing me from increasing CD4s.  Also wondering if perhaps another combo of meds would work better (but being undetectable is the goal of HAART, right?)

My Doctor is pleased I am undetectable and says my CD4 “may take or long time to recover.”  This last visit he said, “may take a long time or NEVER recover” which I do not take as a good sign.

Luckily, I remain OI free, and feel great.  Take my meds 100% on time as directed.  My 46 T-cells are BUSY keeping me healthy.  I’m just worried my lack of recovery and more worrying, downward trend is something that will put me at risk for OI and death within weeks or months.

Interesting note:  after reviewing my chart, it was thought I might be co-infected with HIV-2, but lab results show I tested negative for HIV-2.

Any ideas?

This is amazing.  Some are achieving more than 500 CDs in less than a year.  May be your CD level is sucha low by nature, if there is that kind of things. Have you ever tried a med called Atripla?

[BlueMoon]

Bythebay, all I can do is offer encouragement and counsel patience.  Although my CD4 wasn't as low as yours, it took me a year on meds to see significant improvement.  Just keep doing the right things and as long as you can keep the virus suppressed, you should eventually see improvement.

[ByTheBay]

Thanks for the feedback.

To answer the question about HepC,  I tested negative for Hep-A, B, and C.

I used to take a multi-vitamin but stopped since I didn't like taking "pills"  (HA HA that seems funny now that I take 6 a day) so I will take a one-a-day type supplement (after asking my Dr).

For now, my numbers are what they are, and I am trying to be patient.

I have read about a study where they are adding Maraviroc to patients who have an undetectable VL, but after 1 year have CD4 < 350 and less than 100 CD4 recovery, so that at least makes me think there are others with my type of numbers.  The study is ongoing and has a site here in San Francisco, so that is my next option to explore. 

Again, any ideas of what to ask or look for would be helpful.  In the meantime I am trying to be patient....

[lavidaloca]

Hello  ByTheBay....

I tested positive about 1-1/2 years ago.  Anyway, my doctor assumes that I naturally had a low t-cell count, since my baseline viral load was only 11,000. However, my cd4 count started at only 19. It's taken over a year for mine to increase to 55...  and the increase actually has only started to take off in the past 3 months or so. I am currently taking truvada, norvir, reyataz, dapsone, zithromax & 2 inhalers for copd/chronic bronchitis. 

So, my humble advise is to be patient. Stressing over this situation will only make it more difficult for your system to recover. My doctor consulted with other doctors about why I was not progressing "as expected". We considered adding Insentress, but decided that more time was the best route, because my cd4 percentages were steadily increasing (although very slowly)...  and I felt fine otherwise.

What has helped me....  I stopped smoking 7 months ago. I began seeing a counselor, learned meditation and now practice it daily on my own at home, at work, on the bus, wherever.  Also, yoga...  tai chi walking...  changed my diet to include more healthy foods... read some books and listened to cd's of Louise Hay, Caroline Myss, Deepak Chopra, Susan Gregg...   began painting and playing the piano (which I had not done in 20 years) whenever I can...  doing whatever it is that gives me a sense of happiness and peace.  I began to change my attitude about the world around me... changed my perception about a lot of things...  and finally, physically moved to a more "relaxed" environment for myself.

Everyone is different as to how they respond to certain things. Find what is right for you. I hope this has helped. Please take care!

[ByTheBay]

Hi lavidaloca,
Thanks for your post and info.  It is comforting to know there are a few people out there in the same boat -- undetectable viral load but CD4 count that stays well below 100 for an extended period.  I've done as much research as I can and the only thing suggested is a very low CD4 count prior to HIV infection.  The reply from everyone is once the viral load is undetectable, switching meds or adding additional meds is not likely to increase CD4.  The only thing that seems to make a difference is time and a healthy lifestyle.
That being said, I have tried to eliminate stress from my life, focus on good things, and relax about numbers.  Not easy, but I hope it helps.
Would you mind sharing the following (if you have it)?
1) Do you know how long you were infected before you tested HIV+?  Was it a short period or perhaps years?
2) What is your CD8 count like?  Is it also very low? (Mine is)
3) What is your WBC and has it fallen over time?
This would help me to further identify we we have the same "patterns"  Thanks!