No improvement in cd4#s

[St Ives]

Just arrived home after collecting my lab results. Champagne nicely chilled in the fridge, big smile on my face. I open results, and my smile quickly disappears.
Last November my cd4 was 12,vl750k. Last January it was 48(3%)vl<40. I expected a huge increase due to the fact that I feel 100% better than I initially did.Gained weight,appetite,strength etc. Shock and horror...cd4 is 42(2%) vl<40.
What's going on guys? I'm not going to let these very disappointing results get me down but your insight will be very gratefully received.
Sod it.....Im still going to drink the champagne.

[leatherman]

when did you start meds?

sometimes it can take quite a while to see an improvement. Studies have shown that having a very low nadir (the lowest point of cd4) often takes a long time to recover and often doesn't recover very much. If your nadir was only 12, your immune system was quite destroyed. You definitely fit the profile where it can take a long time.

but don't let that get you down too much. It matters more that your cd4s recover and how well they work, rather than how many you have.

as an example, I had a nadir of 5 (I also had counts months later of 7, 12, and 24). Remember that I was on the earliest meds to start with in the mid 90s, but it took me 10 yrs to reach undetectable and nearly 15 yrs before I got a cd4 count to remain over 200. After 20 years of meds, I've only held barely over 300 for just the last year. However, those 250-325 have been working just fine. I haven't had but one cold and I haven't been back in the hospital for nearly 16 yrs now.

one quick point too, unless you had your cd4s checked BEFORE you were infected, you probably don't even know what a normal cd4 count is for you, so really you'll never know really how far you're off from that normal (which could have been anywhere from 400 or 500 to 1500)

what you need to focus on is staying adherent to your meds. They will destroy the HIV and allow your immune system to recover. You should also be on a medication like Bactrim until you're stable over 200 to help prevent getting any OIs until your immune system improves. Also you'll need to pay attention to any symptoms you might have now. As your immune system recovers and begins to work again, you might actually get sicker as your body finally begins to fight off some of the germs that might be at work in your system right now. Yes, as odd as it sounds, Immune Reconstitution Syndrome means that you could get sicker in the near future but that would mean that you are actually getting better. LOL

recovering from being down to 12 cd4 and a vl near 1 million will take time and could be problematic. But hold onto hope. The drugs can work wonders these days! Plus lots of people have been that ill, and come back to health, so you can too.

mmm I love Chamagne! Cheers!

[St Ives]

Hey Leatherman, thanks for your informative reply. Makes a lot of sense.
Started meds last november.
Getting sicker for getting better (IRS) doesn't sound very attractive but what happens, happens.
Just made an appointment with my doc for tomorrow, just to be on the safe side.
Genotype test comes to mind.  we'll see.
Anyway; back to the champagne, it's bloody lovely...
       be well.

[Ann]

When you're on meds, the most important number is your viral load. You achieved an undetectable VL quite quickly, considering how high it was to start with. You've remained UD as well, which means your meds are doing their job.

You won't need a genotype test done again (this should have been done before you started meds) - and they can't do it anyway unless you have a detectable VL, which you don't.

As I said, when you're on meds the most important number is your VL. However, while your CD4s are still under 200, that's an important number too because as Mike mentioned, you should be on a prophylactic antibiotic (like Bactrim) until you're above 200 for six month or so.

As long as you remain UD, your CD4s will rise, even if they do so slowly. Hang in there, you'll get there!

Enjoy the champers - you actually do have something to celebrate!

[St Ives]

What a lovely lady you are. You've just put a smile back on my face         Thanks for your advice concerning a genotype test. I certainly wasn't given one initially.
I'm on something similar to bactrim....po-trim, and it seems to be doing the trick.
Shampoo's finished but I'll get another bottle ready for my next blood work results in a couple of months.
Enjoy your day.

[Ann]

You're welcome.

Po-trim is the same thing as Bactrim, but it's manufactured in Thailand. It has the same ingredients - sulfamethoxazole and trimethoprim. Good to hear you're on it!

[DavidinCA92284]

As long as you remain UD, your CD4s will rise, even if they do so slowly.

Sorry to be picky, but just because one remains undetectable does not mean that over time CD4s will rise.  Rising CD4s would be nice, but many do not experience that . . . like in my case whereas they've been in the 200-300 range for 20+ years.

[Ann]

Sorry to be picky, but just because one remains undetectable does not mean that over time CD4s will rise.  Rising CD4s would be nice, but many do not experience that . . . like in my case whereas they've been in the 200-300 range for 20+ years.

What you say is very true - many people who start out with such a low CD4 as St Ives has will plateau in the 200-300 range. Leatherman, who also posted in this thread, is one such person as are you.

However, it's pretty much a sure bet that his CD4 WILL rise from 12 and eventually get over 200, even if they do plateau at that or a slightly higher point. In fact, his CD4s have already gone up, from a starting point of 12 to a current result of 42, and a 48 in-between.

Hopefully he will have a better experience than some and get up over 400/500 in time.   

[CraigMKE]

The CD4 number is the hardest to deal with. It is like failing a test you have studied for. When I was diagnosed I had a cd4 of 7. 8-10 years later (I can't remember my diagnosed year). I am at 64 as of my labs last week. The most they have been is 150 or so. I am alive and kicking with no signs of immediate danger. My point being don't fret about the numbers, they are a guideline to your health status. Take your meds and try to live life to the fullest.

Good luck and keep fighting!

Craig.

[britchick]

Hi St Ives!

I hope that you enjoyed your champagne!
I think its great that you are U/D and im sure that your CD4 count will start to rise very soon.
I think our bodies start to fight back to fitness.... good that you are on the  Bactrim.....I was told I would need to take it for  another 6 mth to a yr when I left hospital, depending on the  cd4 count .

Britchick x

[wolfter]

My CD4's were also a single digit with a VL of 6.7 million and I too got frustrated that I became UD pretty quickly but it took a long time for my CD4's to get above 200.  Even to this day, my % remains under 20.

Continue the course and you'll eventually see great improvements. 

Take care and best wishes.

Wolfie

[LoboDog]

Hey St Ives,

When I was diagnosed I hat 47 t-cells. After a month of meds it jumped to 75 and I was happy... 3 months later it dropped to 60...

It took me a year and a half to get over 200. It can be pretty scary...

Please keep in mind that there are other things that effect your immune system such as stress, sleep, exercise, excessive partying... You really need to keep your life on the straight and narrow for a while. (Keep in mind that I don't know anything about your living habits, I'm just throwing this out there.)

[St Ives]

Yes, I totally agree. It is like failing an exam that I have been studying for.The reason being;  since diagnosis last year, I've totally turned my life around.
I'm no longer the selfish, self obsessed,"wanting to be the center of attraction" arse that I once was.The "2-3 day walkabouts" or "everything to excess" attitude has gone. That rather large chapter of my life has finished. Like cocaine; fun at first, but then becoming pathetic.    Now I'm empathetic,sympathetic;much more caring and considerate towards others.
I devote my time to those close to me.  I appreciate my home. I eat sensibly. I hardly drink anymore. OMG..I've turned into a monk!!!  Or maybe I've just grown up at last.
So you see; I did expect better results with my T-cells, but it's not the end of the world. I'll keep "studying"  I'll get there eventually.
Be happy.