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Author Topic: 2 and 1/4 years in treatment and low CD4 counts  (Read 5557 times)

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Offline Pirata

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2 and 1/4 years in treatment and low CD4 counts
« on: November 18, 2020, 07:28:06 pm »
Hello everybody, I was diagnosed almost two years ago and I have been undetectable since the second month I started my treatment. I have had a hard time with my CD4 I started with 100 and four months ago I reached 209, today I received my last results and they went down to 174. I was taking dapsone up until I was 150 like 8 months ago. I asked my doctor if I should start taking it again and he said that since I have been undetectable for almost two years the Current guide lines say that a person with a count to between 100 -200 CD4 that are undetectable for at least 3-6 months do not required add dapsone. I also have developed for the last three months, a cough that comes and goes and he said that is possible that that is affecting my count. I had two herpes breakouts during last month, so do you think that affected my count?

Offline Almost2late

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #1 on: November 18, 2020, 11:17:58 pm »
From my understanding cd4 counts fluctuate throughout the day, so it could be there's nothing wrong with your count and that you may see a rise again on another test. After I reached 200 cd4's, I also had a few times I tested under 200, and then back up again so I know how frustrating that can be.. and mind you I started with 13 cd4's 6 yrs ago.

Supposedly cd4's are higher in the later part of the day, and lower in the morning.. but try not to stress about it bc what's important is keeping that viral load undetectable with adherence to your treatment.

Getting plenty of rest, eating well, avoiding stress when possible and not abusing your body with drugs, alcohol or smoking can imo help your overall health, giving your body a chance to fight back. I'm not sure if herpes will effect your cd4's but I remember my doctor telling me the flu can.. have you asked your doctor?

Diagnosed - Feb.2014 Cd4 13, at 2.8%
Recent - Sept 2021 Cd4 284 at 17.8%

Offline Pirata

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #2 on: November 19, 2020, 04:36:06 am »
Thank you for your reply, I am having my appointment in a week I will ask him

Offline harleymc

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #3 on: November 26, 2020, 02:12:43 am »
Cd4 counts don't inevitably go up.  I had 6 years of seesawing numbers before I cracked the 200 figure.

They still seesaw a bit.

For much.of the time with cd4 counts under 200 I wasn't on any antibiotics.

Offline tinberlake

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #4 on: November 28, 2020, 06:06:41 pm »
Same here, mine dropped from 900 to 500 in a year. but i guess its just normal it fuluturates. though i experienced major side effect and had to change my treatment 2 times

Offline willywilly65

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #5 on: December 03, 2020, 03:03:15 pm »
like you, in the beginning, same with me, back in 2010, dr informed me, i had cd4 of 1, went on a regimen, no side affects what so ever except for the one i was taking over time which began to cause depression, i reached as high as 260 once since on the cocktails, its now 2020 and im hoovering always >150 nmt 200 it seems and i take my regimen everyday, basically one pill and an antibiotic with it.
With that being said, it all goes to how your body is feeling in all aspects of health, i rarely get sick and im thankful for that. As long as you know your taking your meds,eating right,feel right, drinking ample water,staying healthy, then it becomes Mind over Matter. Hope this will encourage you to develop an even stronger since of HEALTH is Wealth!

Offline CS31020

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #6 on: December 08, 2020, 05:38:10 pm »
Thanks for the info in this post.
My first 2 tests (March 2020 and May 2020) was 224 and 276
My test 3 months ago was 326
Todays results are 260.
I'm still in my first year of having HIV so seeing the upward trend on my cd4 count drop really concerned me.

I'm thankful I can always find the info i need on these forums.

Offline Pirata

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #7 on: December 15, 2020, 06:36:53 pm »
Thank you guys! I donít feel sick , my health is good, other than having herpes outbreaks once or twice a year. It has been hard for me to get to the magic number, in August I was 209 and the doctor told me I donít need Dapsone anymore. In my recent visit he reaffirmed that, he said that since I have been undetectable for almost 2 years I donít need to take it even though my count was under 200. I hope next time I have better news. Once again for your replies and your support

Online leatherman

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #8 on: December 15, 2020, 08:27:27 pm »
other than having herpes outbreaks once or twice a year.
depending on how often and how severe these outbreaks happen you might want to talk to your doctor about taking acyclovir.

I kept having a herpes zoster (shingles) outbreak in one of my fingers. I noticed how as time (years) went by, I was having more outbreaks more frequently. (start recording and tracking outbreaks now, even if they are rare. That way you'll know if and when the outbreaks before more frequent and you can show your data to your doctor to help you get a better diagnosis and treatment early.) There is a daily dosage of acyclovir that can be prescribed (usually 2X 400mg daily, ie 2 pills a day) to keep shingles (herpes zoster) or herpes simplex from breaking out.

there's an extra benefit, besides no more outbreaks (or much less severe if they do happen to happen), to taking acyclovir. The med is an antiviral and has been shown to work against HIV! :) of course, not as much as an actual antiretroviral; but if you gotta take an extra med to keep the herpes at bay, it's nice to know that med would be working against HIV too. win-win!
leatherman (aka mIkIE)

Offline Pirata

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #9 on: December 25, 2020, 05:56:08 pm »
Thank you leatherman. I started taking aciclovir daily now, I was taking it every other day, but I just want to avoid outbreaks, letís se if it works

Offline Mindless

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #10 on: December 26, 2020, 02:46:03 am »
depending on how often and how severe these outbreaks happen you might want to talk to your doctor about taking acyclovir.

I kept having a herpes zoster (shingles) outbreak in one of my fingers. I noticed how as time (years) went by, I was having more outbreaks more frequently. (start recording and tracking outbreaks now, even if they are rare. That way you'll know if and when the outbreaks before more frequent and you can show your data to your doctor to help you get a better diagnosis and treatment early.) There is a daily dosage of acyclovir that can be prescribed (usually 2X 400mg daily, ie 2 pills a day) to keep shingles (herpes zoster) or herpes simplex from breaking out.

there's an extra benefit, besides no more outbreaks (or much less severe if they do happen to happen), to taking acyclovir. The med is an antiviral and has been shown to work against HIV! :) of course, not as much as an actual antiretroviral; but if you gotta take an extra med to keep the herpes at bay, it's nice to know that med would be working against HIV too. win-win!

That's interesting I use to have 2/3 herpes outbreaks a year and they're quite annoying, especially bc localized in my foreskin  :-[ Dr usually prescribes Acyclovir for 5 days (3x400 mg/day). Lately, outbreaks have become more frequent. I had no idea Acyclovir could be taken indefinitely and I will ask my dr. Now I'm dealing with yet another skin problem (rush), still in my foreskin (dx is not yet clear bc it's not responding to anti-fungal and only partially to corticosteroids). To complete the picture, I was also diagnosed with HPV 3 years ago.

@Pirata my last CD4 count falled by about 150 cells compared to previous. ID Dr said not to worry as the CD4% looks stable: absolute nr can fluctuate due to many factors, whereas % is more stable and better representative of cd4 status

Offline Pirata

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #11 on: January 31, 2021, 11:38:17 am »
My next check is in April hoping for better news, thanks everyone

Offline kentfrat1783

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #12 on: February 04, 2021, 08:28:31 pm »
Maybe it's just the season of decreasing CD4.  I got my latest CD4 count yesterday and it's down to 225 from a high of 290 back in December of 2019. As shown below

02/02/2021 - CD4 225 (19%) VL <20
06/08/2020 - CD4 257 (20%) VL <20
03/17/2020 - CD4 285 (19%) VL 101       (2.00)
12/17/2019 - CD4 290 (20%) VL <20

It's just odd why it's going down and from what I know there isn't much I can do to correct that.  I totally understand that the numbers go up and down but just don't like a trend over a year with it going down. 

I'm still trying to keep a positive attitude, and I hope you are keeping your spirits up. 
02/02/2021 - CD4 225 (19%) VL <20
06/08/2020 - CD4 257 (20%) VL <20
03/17/2020 - CD4 285 (19%) VL 101       (2.00)
12/17/2019 - CD4 290 (20%) VL <20
09/17/2019 - CD4 218 (16%) VL (?)
06/18/2019 - CD4 173 (16%) VL <20
03/13/2019 - CD4 170 (16%) VL <20
January 2019 - Started Triumeq
12/05/2108 - CD4 174 (18%) VL <20
08/28/2018 - CD4 166 (15%) VL <20
05/08/2018 - CD4 106 (11%) VL <20
03/05/2018 - CD4   90 (10%) VL <20
12/11/2017 - CD4   60 (  8%) VL ?
09/07/2017 - CD4   42 (  6%) VL  54        (1.70)
May 2017 - Started Atripla
05/11/2017 - CD4     2 (  1%) VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline daveR

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #13 on: February 05, 2021, 12:18:53 am »
Your percentage is stable, that is important. I understand the psychological impact though of dropping numbers. Mine stay in normal range but I still get on edge if they go down in number.
Keep taking the pills, I am sure the numbers will turn around when they are ready to.

Dave

Online leatherman

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #14 on: February 05, 2021, 07:05:46 am »
just don't like a trend over a year with it going down.
when you consider that the cd4 count can change by 100 pts within a day, the 65 point change in your count over a couple of years is statistically holding steady...which is confirmed by the cd4/cd8 percentage. the trend you're worried about is no trend at all.

don't misunderstand me. It took me over 12 years (this was during the 90s and 00s) to get over 300, spending much of that decade+ with counts well below 200, so I can certainly understand the worry about cd4 count. But as long as your count is above 200 and your viral is UD, worrying about cd4 counts (which are not a measure of your "healthiness" nor a measure of the strength of your immune system. it's just a quantity amount) is simply putting stress on your system that you'd probably do better without. ;)

Take your meds daily, think happy thoughts, and try to make yourself healthier through better diet and exercise like everyone should do. :)
leatherman (aka mIkIE)

Offline Almost2late

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #15 on: February 06, 2021, 03:06:11 am »

But as long as your count is above 200 and your viral is UD, worrying about cd4 counts (which are not a measure of your "healthiness" nor a measure of the strength of your immune system. it's just a quantity amount) is simply putting stress on your system that you'd probably do better without. ;)

Take your meds daily, think happy thoughts, and try to make yourself healthier through better diet and exercise like everyone should do. :)

This 👆 should be in some "how to live with HIV" instructional manual. 😉

My numbers have jumped around a bit too since my diagnosis in 2014 with 13 cd4's. Here's a bit of my roller coaster with the virus.

              cd4     %
12/17   194    17           
02/18   204    17           
08/18   207    16.1       
11/18   273    16.5       
03/19   215    17.7       
07/19   347    15.1     
12/19   282    16.8         
04/20   262     15   
and more recently
08/20   291    16.5         
01/21   313    16.4
all the time UD, haven't had a blip since August of 2017.

As long as you're UD, try not to stress about it bc you're doing great.
Diagnosed - Feb.2014 Cd4 13, at 2.8%
Recent - Sept 2021 Cd4 284 at 17.8%

Offline Pirata

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #16 on: March 14, 2021, 01:54:41 pm »
Thank you, my next appointment for blood work is in two weeks I hope I get better results °

Offline Pirata

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #17 on: August 03, 2021, 04:26:12 pm »
Hello everyone. I have been under treatment for the last 2 1/2 years. I started with 100 CD4, and during all this time the highest I have reached is 201. Today I received my latest results and I went down to 166 from 199. Have anybody experienced something similar? I havenít feel sick during all these time. I also have been undetectable after 3 months of treatment.

Online leatherman

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #18 on: August 03, 2021, 07:08:58 pm »
I have been under treatment for the last 2 1/2 years. I started with 100 CD4, and during all this time the highest I have reached is 201. Today I received my latest results and I went down to 166 from 199.

a few notes and then a conclusion:
1. the best way to view cd4 counts is by at least 3 tests over at least 6 months of more
2. cd4s can change by up to 100 points a day
3. cd4 count is a measure of quantity not a measure of quality. some people with high cd4 counts get sick. some people with lower cd4s are very healthy.
4. without knowing your cd4 count prior to HIV, you actually don't know your "normal" count. your normal is based the genetics you got from your parents, and since that makes everyone's immune system unique, the normal range is a wide range from 400 to 1200.
5. there is nothing that specifically raises cd4. Nothing except ARVs, which stop HIV from destroying cd4s and allow them to recover to whatever might be "normal" for you
6. cd4s are only a part of the immune system not the whole thing.

so the conclusion:
in 2.5 yrs, we could graph your numbers of 100, 201, 166, 199. Factoring in the possible 100 pt daily change, basically your cd4s have held steady all this time. Almost a straight line but with a slight tilt upwards.

there's nothing wrong with that. it's just not inspiring to you as a patient. Since you have gotten and remained undetectable,  then you, like so many others, may just take some time before your cd4s creep up into the >200 range. While most people will have higher cd4 counts sooner, I know several members have gone 2 to 5 yrs before increasing that much. Some even up to 10 yrs. (it took me 12 yrs!!!)

Do you feel "healthy"? Are you having any serious health issues? If you can answer yes and no, then don't look for trouble. LOL keep taking your meds and enjoying your life.


i really should have looked completely through this thread before replying; but I'm not going to erase all that since I really thought about it as I was typing.  ;D you're posting about the same issue you posted about in Nov 2020. I'm sorry that another 8 months have gone by and your cd4 count hasn't improved much but sometimes that's just how it goes.

you might want to go through all your labwork looking for the cd4 percentage. unlike the absolute cd4 number, this number fluctuates a lot less. A number of 25% to 65% is in the normal range. (My lab results I get says 32% to 64%) What has this number been doing over the last 2.5 yrs? up, down, stable? I'm going to guess up; but stable would be a fine answer too.  ;) :D
leatherman (aka mIkIE)

Offline Pirata

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Re: 2 and 1/4 years in treatment and low CD4 counts
« Reply #19 on: August 04, 2021, 10:21:12 am »
Leatherman: I always panic and get a little anxious when I receive my results, it takes me a little bit to calm myself and remember that I am fine. I havenít been sick for the last 2 1/2 . Next time I am going directly to this post to help me to recover from my disappointment when my CD4 go down. Thank you for taking your time to write a reply and very grateful  🤗

 


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