10 month update

[Allthefeelings]

I’ve posted in here previously and it’s helped my overall mental state so I figured let’s try again.

I was diagnosed in April 2022. VL 76000. CD4 22. No OI. I became suppressed by month 3. Undetectable by November 2022.

Moved in January 2023. Just got my first labs. VL undetectable. CD4 dropped to 118. I’m absolutely devastated. This low CD4 is the only seeming abnormality in my lab work. I just know if I can’t get it up over 200 and growing I’m screwed. I cannot find hope. I’m usually a very hope filled person. But I’m struggling.

Today I held my Biktarvy in my hand and contemplated not taking it. What’s the point?

I do not want to feel this way but I’m just lost.

[Jim Allen]

Hiya,

Sorry to hear that you are feeling a bit down/lost.

You just started treatment and got the virus suppressed, your results are excellent, and the medication is doing exactly what it should do to suppress the virus. That's the most important thing treatment-wise.

It will take time for the immune system time to "heal" and it can start doing so now since the medication is depressing the virus.

As for your CD4 counts: 22 (3%) - 203 - 134 (13%) - 118

Going from 3% to 13% isn't abnormal; it's fantastic, and the % is a far better tool to keep an eye on than the total count, as that can vary 100+ points within the same day.

The % indicates a steady improvement, and these things take time. Remember that plenty of forum members had counts below 200 and were/are perfectly healthy, as they don't measure overall health.  I would send you a few hundred of my CD4 counts if I could to give you peace of mind, although my CD4 are lazy little bastards that don't work no matter what the count.

How are you feeling otherwise?

If you ever need to chat, vent or cry, send me a PM and ill set up a call for the two of us. You are not alone, were all here to support you 

Also, there are the monthly forum members meetings if you want to join a group meeting; next one is on Saturday the 18th of Feb. https://forums.poz.com/index.php?topic=76748.msg

[Jim Allen]

I forgot to ask, what did your healthcare provider say regarding these CD4 concerns?

[leatherman]

What’s the point?

The point is moving on with your life!

In your post, you never mentioned anything about your actual health and how you're feeling. If you're not sick,  then you're really worrying for nothing. Considering you haven't even quite made it through a year's worth of meds, you're numbers aren't all that unique.

so cd4s:
well, the cd4 count is just that - a count of how many cd4s you have. There is no test of the quality/strength of your cd4 cells. Plenty of people have lived decades with low (<300) cd4s quite healthy, while others with higher counts have gotten sick. The general wisdom though is that the more you have, the more your immune system is working. But the cd4 count all on it's own doesn't really tell you about how healthy you are.

You mentioned a cd4 count of 22 then 118, so I'm thinking you missed telling us a result in there. But without even knowing the missing count, it's important to note that cd4s can change by up 100pts in a day! So unless the missing count is 500+ the change is your numbers hasn't been that drastic.

Also, cd4s don't always improve as a straight line function (like 22, 275, 400, 550...). Sometimes, especially with that 100pt a day possible change, the task of reaching 400+ is up and down for a while. The best way to really look at cd4 counts is by viewing the change in at least 3 tests over at least 6 months or more. If your counts were something like 22, 352, 118, those graphed out would actually show a slow but upward trend. And that's what you want to see.....no matter how long it takes.

Actually, once you reach undetectable your cd4 count is just an arbitrary number to consider. All HIV meds do is suppress HIV. After that, without the HIV destroying cd4s, your whole immune system (and cd4s) will recover (sometimes in a short time, sometimes in a longer time) to whatever you normally have based on your genetics (that's why the "normal" range of cd4s is so large going from 400 to 1200).

The only real worry comes in when your cd4 is <200. With that low of an immune system, it's possible for opportunistic infections to be a problem. But, thank goodness, that's not a guaranteed outcome. Plenty of people, myself included, have lived for a decade or more with <200 cd4s and have never been sick. Being more cautious of your health (more exercise, less stress, less exposure to others) can certainly help you to avoid illnesses until your body recovers more. And of course your body is still recovering. As long as HIV is suppressed, your body is slowly recovering and that's a good thing...no matter how "scary" some of your blood results might seem at this time.

Hang in there because things do get better - so says me and thousands of people who have been living long healthy lives for 40+ years with HIV. Your life will be a long trek and the time you're going through now is just a blip. This time next year, you'll be getting up every day, taking your daily med, trying to live your life to the fullest, and wondering how you ever thought there maybe wasn't a point to it all.