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Author Topic: Worried about CD4  (Read 2385 times)

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Offline Pirata

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Worried about CD4
« on: June 10, 2019, 04:28:48 pm »
Hello everyone, I am a little bit worried about my CD4 count, I just came from doctors visit and it didnít improve since my last visit. In February the 25th I started my treatment with a VL of 121, 000 copies/ml and CD4 of 100. Then on March 21 st my VL was 155 copies/ml and CD4 140. Today the doctor says my VL is under 20, so I am officially undetectable, but my CD4 remained in 140. He said I donít have to worry because probably the count is going to go up now that I am undetectable,. I have to continue taking my biktarby and bactrin for two more months. I have to go back for labs in a month and my next appointment is in 3 months. I feel a little disappointed even I know I have to celebrate my status as undetectable. Anybody here has experienced something similar?Thank you

Offline leatherman

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Re: Worried about CD4
« Reply #1 on: June 10, 2019, 05:42:56 pm »
the antiretrovirals have to take some time to stop your HIV from replicating (getting to undetectable). Your immune system has to take some time to recover and rebuild. how long that time is and how high your cd4s will get is all based on the genetics your parents gave you, so you shouldn't stress out about this as there is absolutely nothing you can do ... now that you are taking meds.  ;) ;)

You will need to continue bactrim until your cd4s are greater than 200 and you will need to continue taking biktarvy every day from now on.

Go ahead and celebrate being undetectable (and so very quickly!!) because your viral load is really the most important number. As long as it's undetectable, the meds are doing their job. After your cd4 count gets above 200, and you're not vulnerable to opportunistic infections (that's when you can stop bactrim. trust me, keep taking it until then. PCP (pneumonia) is a terrible disease!) you won't have to focus on your cd4 count. It's going to be what it's going to be. ;) If you remember that the cd4 count is only a count of how many cd4s you have and not how strong those cd4s are, then you'll understand why that number doesn't mean much about how "well"/healthy you are. ;)



a couple basic things:
your cd4s can change by 100 pts in one day.
they are higher in the evening than morning.
the best view to view them, since they are so variable, is to look at the trend of at least 3 tests over 6 months.

so looking at your information what we see is that in a mere 3 months, your viral load dramatically dropped from over 120k to >20 while your cd4s have not declined anymore  (100,155,140,140) but have had a slight trend up. Those are things to celebrate :D
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline Pirata

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Re: Worried about CD4
« Reply #2 on: June 10, 2019, 06:04:23 pm »
Thank you leatherman for your information and encouragement, itís really appreciate it

Offline harleymc

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Re: Worried about CD4
« Reply #3 on: June 11, 2019, 12:40:42 am »
Seven years down the line I've yet to crack the cd4 count of 200. worried? No point!I can't do anything to change it.

Offline MarkintheDark

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Re: Worried about CD4
« Reply #4 on: June 11, 2019, 01:08:51 am »
Hi Pirata - As others have said, congratulations on the UD.  I guess more to the point, congratulations on sticking with your regimen.  Maybe your doc has mentioned it, but watch your sun exposure with the Bactrim.

It's perfectly normal in your first year or so to be hypervigilant about numbers.  As already mentioned, the VL is the most important value.  When it comes to CD4s - not that people necessarily do this - the percentage is a more reliable value over the long term than the absolute count.

What I'll also mention is that I've remained into the mid-100s-200s for years...and I'm still here.  That's my normal range.  It's not ideal, but that's how my body responds to my meds.  If you find yourself upset over lab results, it's sometimes simpler to just ask yourself, "How do I FEEL?"

You're doin' good.
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline Pirata

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Re: Worried about CD4
« Reply #5 on: June 11, 2019, 04:51:16 am »
Thank you Mark and Harley, itís good to know about other peopleís experiences, reading what you said gives me a little of peace of mind. And yes Mark, I feel great so I am going to focus on that and do what I can, to stick to my treatment.

Offline Loa111

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Re: Worried about CD4
« Reply #6 on: June 12, 2019, 03:14:33 am »
I started treatment May 18 CD4 22, 1 year later Iím CD4 137 and still on daily antibiotic. Iíve stopped worrying and obsessing about my CD4 though it took me a year to stop lol.

While further increases in CD4 are very welcome and nice, really it is what it is, all we can do is strictly take our meds effectively each day to remain UD.

Like you Iím hoping for a  consistent >200 at some future point, so ID doc will allow me to stop the daily antibiotic.
« Last Edit: June 12, 2019, 03:16:44 am by Loa111 »

Offline Pirata

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Re: Worried about CD4
« Reply #7 on: June 12, 2019, 04:54:42 am »
Thank you loa and after I have read all your comments I have felt better, thank you again

Offline CaveyUK

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Re: Worried about CD4
« Reply #8 on: June 12, 2019, 05:56:17 pm »
Yes congrats on reaching UD. We often obsess about cd4 cell count but really aside from initial diagnosis and in the early months to dictate antibiotic usage, it's a pretty meaningless metric to get hung up on long term. As others have said, keeping the viral load undetectable is the only thing you need to do, and everything else will take care of itself eventually....in some people cell counts go up quicker than others, but it's all about the quality rather than quantity.

So keep yourself UD and soon you will be in a position to forget about CD4's altogether :)

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Offline Pirata

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Re: Worried about CD4
« Reply #9 on: June 12, 2019, 09:31:08 pm »
Thank you Cavey, today I was able to see my results ( I had just heard from ID) and I was so happy of seeing <20!!! As I said before, and as all of you have said as well, I am going to do what I can do continue taking my Biktarvy.

Offline Pirata

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Re: Worried about CD4
« Reply #10 on: August 05, 2019, 04:43:27 pm »
Hello everyone, once again I am here all scared about my situation. After my last post( one month) My labs showed and improvement of 10+to 150, but at that time my VL changed from <20 to 51. Doctor said it was ok because I was increasing my CD4 slowly and I was still undetectable. I have other labs done last Friday and my CD4 went down to 140 again. I still donít know the results of my VL. It has been 5 months since I started treatment, and I am really concerned about this situation. Is this normal?

Offline Jim Allen

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Re: Worried about CD4
« Reply #11 on: August 05, 2019, 05:16:11 pm »
It's not a race  ;). You started treatment only a few months back and it's only just started to suppress the virus, the rest takes time.  Also, a CD4 count of 140 or 150 is basically the same, no real difference.

Look for some people the CD4 levels do go up quickly within the first year, many factors to it, none you can change, others have to wait and it takes longer. Have patience and, try to remember there is no point worrying about a number that you can't change.

How are you feeling for the rest?

BTW the below post is worth reading again.

the antiretrovirals have to take some time to stop your HIV from replicating (getting to undetectable). Your immune system has to take some time to recover and rebuild. how long that time is and how high your cd4s will get is all based on the genetics your parents gave you, so you shouldn't stress out about this as there is absolutely nothing you can do ... now that you are taking meds.  ;) ;)

You will need to continue bactrim until your cd4s are greater than 200 and you will need to continue taking biktarvy every day from now on.

Go ahead and celebrate being undetectable (and so very quickly!!) because your viral load is really the most important number. As long as it's undetectable, the meds are doing their job. After your cd4 count gets above 200, and you're not vulnerable to opportunistic infections (that's when you can stop bactrim. trust me, keep taking it until then. PCP (pneumonia) is a terrible disease!) you won't have to focus on your cd4 count. It's going to be what it's going to be. ;) If you remember that the cd4 count is only a count of how many cd4s you have and not how strong those cd4s are, then you'll understand why that number doesn't mean much about how "well"/healthy you are. ;)



a couple basic things:
your cd4s can change by 100 pts in one day.
they are higher in the evening than morning.
the best view to view them, since they are so variable, is to look at the trend of at least 3 tests over 6 months.

so looking at your information what we see is that in a mere 3 months, your viral load dramatically dropped from over 120k to >20 while your cd4s have not declined anymore  (100,155,140,140) but have had a slight trend up. Those are things to celebrate :D
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Pirata

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  • Posts: 27
Re: Worried about CD4
« Reply #12 on: August 05, 2019, 05:51:18 pm »
Thank you Jim, I feel great, but in the back of my mind there is always that voice that doesnít let me stop worrying I hope that when the time pass I am going to be able to relax about it.

Offline Pirata

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  • Posts: 27
Re: Worried about CD4
« Reply #13 on: August 06, 2019, 01:12:44 pm »
Doctor emailed me and told me he will change my medication to Symtyza, I am taking Biktarvy right now. However I am afraid to the side effects, right now I have not had any. Anybody in here has taken Symtuza before.

Offline Jim Allen

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Re: Worried about CD4
« Reply #14 on: August 06, 2019, 01:25:30 pm »
Why change if you don't mind me asking?  The VL is suppressed right and, you are happy with the drug that you have no?
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Pirata

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Re: Worried about CD4
« Reply #15 on: August 06, 2019, 01:48:03 pm »
I am still waiting for my last results on VL if I am still undetectable I am going to tell him I want to continue with my current medication and give it more time. Probably he is reacting to my concerns about CD4, but reading and re-reading all the comments about n here has helped me to relax and wait.

Offline Jim Allen

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Re: Worried about CD4
« Reply #16 on: August 06, 2019, 01:57:04 pm »
Glad everyone's comments have helped.

Yeah, If it was me in your shoes I would be sticking with the meds you have unless something new came up in the bloodwork.
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Pirata

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Re: Worried about CD4
« Reply #17 on: August 06, 2019, 01:58:18 pm »
Thank you Jim, that is what I am going to do.

Offline Pirata

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Re: Worried about CD4
« Reply #18 on: August 09, 2019, 05:47:22 pm »
I got my VL results today and it was 31, so I am undetectable! I told my doctor I donít want to change my medication if I were undetectable, he said itís ok with him! So a reason to celebrate!!

Offline Jim Allen

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Re: Worried about CD4
« Reply #19 on: August 09, 2019, 05:58:21 pm »
Excellent update  :)
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Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
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Read about Treatment-as-Prevention (TasP) here:
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Offline leatherman

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Re: Worried about CD4
« Reply #20 on: August 09, 2019, 10:24:15 pm »
great news!!
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline Pirata

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Re: Worried about CD4
« Reply #21 on: August 10, 2019, 08:46:11 am »
Thank you very much for all your support!

Offline Pirata

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Re: Worried about CD4
« Reply #22 on: November 19, 2019, 06:02:39 pm »
Today I received my results after 3 months, I was a little disappointed because my CD4ís count came at 110. It has been very hard for my body to improve the count. On the bright side my VL is 35 undetectable, so I feel great about it. I was hoping for a good number in my CD4 because I feel great, but I guess I have to get used to lower numbers now. I still have to take my bactrim and I am ok with that because it really does not give me any side effects. Hopefully in the future and after more time under treatment they will get to a point in which I donít need the bactrim any more.

Offline Jim Allen

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Re: Worried about CD4
« Reply #23 on: November 19, 2019, 06:10:44 pm »
Hiya

Glad to hear that the VL is still supressed and the fact  that you feel great is fantastic news  :)

On the CD4 counts, I know it can be disheartening, most of us have been there and I'm sure many can appreciate the feeling of being disappointed with results. Just keep in mind it can take time and far more important at this early stage into treatment is the supressed VL result and how you are feeling

Take it easy ;)
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Pirata

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Re: Worried about CD4
« Reply #24 on: November 19, 2019, 06:20:53 pm »
Thank you Jim, you and the people in here have been so helpful in this process to understand how the treatment works. I feel grateful for my undetectable results.

Offline JosephP

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Re: Worried about CD4
« Reply #25 on: November 19, 2019, 10:42:12 pm »
Today I received my results after 3 months, I was a little disappointed because my CD4ís count came at 110. It has been very hard for my body to improve the count. On the bright side my VL is 35 undetectable, so I feel great about it. I was hoping for a good number in my CD4 because I feel great, but I guess I have to get used to lower numbers now. I still have to take my bactrim and I am ok with that because it really does not give me any side  effects. Hopefully in the future and after more time under treatment they will get to a point in which I donít need the bactrim any more.

Congrats on being undetectable! That is the goal... The CD4s are a bit tricky and as everyone has explained the recuperation to a higher number depends on each individual and genetics.. When dxd, my cd4 were 198 and VL 78000. And it wasn't until 6 long months that they climbed to 210! As your body begins to recuperate they will begin to rise... So celebrate... Celebrate your being undetectable...
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline Pirata

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Re: Worried about CD4
« Reply #26 on: November 20, 2019, 05:17:30 am »
Joseph now I know, learning to be patient and focus on what is the real indicator of treatment effectiveness. Thank you

 


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