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Author Topic: Feel so stuck.  (Read 3956 times)

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Offline ejwilliamson90

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  • Posts: 39
  • Things can only get better
    • My Facebook Page
Feel so stuck.
« on: September 04, 2012, 12:12:25 am »
As usual , my cd4's just aren't where I want them. After nearly 1 1/2 years on treatment my cd4s have went from 89 to 249. Ok when I say it like that it sounds like great progress. It just seems I have 3 months of rapid immune recovery, followed by 6-9 months of stagnant/very slow or no growth in cd4 . I have also been battling cdiff for three months now, its very painful and drainsme of energy (can that be considered an OI) I wonder why this is. My doctor seems to want me to be moving in the other direction too obviously. I hate having such a slow response after seeing so many of my friends who started below 200 soar above 500 so quickly . I'm sorry if i sounds like eeor. But it just stinks.
04/14/11  HIV- + Diagnosis
05/15/11 Initial CD4/VL reading: 89/ 550,000
05/15/11 - Genotype Test revealed no mutations
06/01/11 -Started Atripla
07/01/11- CD4/VL 125/900
09/26/11- CD4/VL 183/90
10/20/11- CD4/VL  172/72
11/15/11- CD4/VL 185/82
12/20/11- CD4/VL 186/<20!!!!!!!!!!!!!! FINALLY UD!
02/10/12 -CD4/VL 175/70
02/14/12- New Regimen: Norvir, Prezista, Isentress, Truvada
03/05/12 - CD4/VL 203/30 :
04/06/2012: cd4 228 vl <20
05/26/2012 cd4/vl 253/80
07/25/2012 cd4/vl 249/<20
09/10/2012 cd4/ vl 294/<20
Medications:
Prevacid 30, Ativan 2mg 4x/day,Testim 50mg daily, Certavite Multivitamin with Antioxidants, Quinapril 40mg, Fish Oil 3/day, 1000mg Garlic, 2-4 G Carafate, Paxil 20mg, Dapsone 100mg, Norvir, Prezista, Truvada, Isentress.
PRN: Marinol, Baclofen, Ultrum, Patanase, Lidoderm

Offline aztecan

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  • Posts: 5,530
  • 36 years positive, 64 years a pain in the butt
Re: Feel so stuck.
« Reply #1 on: September 04, 2012, 01:02:08 am »
Unfortunately, your situation is not uncommon for people who began treatment with very low CD4s.

I know a number of people who are stuck at 300 or 400 or some similar level and can't seem to improve much from that.

It doesn't mean they never will improve, they still may slowly over time. But I know at least a handful who have maintained a level like yours, or lower in some cases, for years without change.

On the bright side, the meds are working and killing off the bugs.

Try not to be discouraged.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Pricho01

  • Member
  • Posts: 58
Re: Feel so stuck.
« Reply #2 on: September 04, 2012, 01:23:06 am »
Having a cdiff infection must make it seem so hard too! I was hospitalised and diagnosed with colitis and I remember how draining that was! When I'm sick I'll be fucked if I can remember what it was like to be well and feel good! Ya know?

So I reckon you need to hang in there and know that when you have beat the cdiff and are starting to get your head above water you will also start to feel better too!

Do you have family/friends around you? Touch base with someone and have a chat/vent with them... Just hang in there and keep doing what you are doing.... get over the illness for now and focus on the CD4 count laters.....

Keep safe

Phil  ;)
Dear Optimist, Pessimist, and Realist, While you guys were busy arguing about the glass of water, I drank it! Sincerely, The Opportunist

Offline Raf

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  • Posts: 262
  • Bald by choice
Re: Feel so stuck.
« Reply #3 on: September 04, 2012, 02:00:25 am »
I started with numbers similar to yours (CD4 of 92 at Dx), but after 1/2 years, my Cd4 were still under 300. It was until the third year, when my CD4 numbers get over 300 (I'm over 500 actually, but I have 4 years on treatment).

Give yourself time and don't worry about your CD4 growth, more important is that you remain UD. Try to not focus only in your CD4 numbers.
Dx: 05/14/2008
Latest HIV Meds combo I've been taking:

Kaletra + Combivir (since 05/16/2008 - 05/09/2019)
Acriptega (05/10/2019 - today)

Offline leatherman

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  • Posts: 8,619
  • Google and HIV meds are Your Friends
Re: Feel so stuck.
« Reply #4 on: September 04, 2012, 06:42:31 am »
Give yourself time and don't worry about your CD4 growth, more important is that you remain UD. Try to not focus only in your CD4 numbers.
exactly!

I started meds when I was around 5 cd4s and it took 12 yrs to get above 200 - and stay above 200! It's been 20 yrs of meds now and just within the last 2 yrs I've hit 300 but I don't seem to be able to get much more than about 315 (my big high in 20 yrs of meds has only been 318). But I've remained UD for many yrs and haven't been in a hospital in nearly 15 yrs!

there are studies that show that some people who have low cd4s when starting meds sometimes do not ever regain much and it often takes a long time. Not knowing your pre-HIV cd4 baseline, you really don't know what level is "normal" for you anyway.

wow! and you're battling cdiff right now. No wonder your immune system isn't reaching the stratosphere yet - it's battling a huge issue! Maybe when it has cleared that and not working so hard, it'll have time to really work on recovery.

Try to hang in there! Your numbers have greatly improved and that's what really matters.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline ejwilliamson90

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  • Posts: 39
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    • My Facebook Page
Re: Feel so stuck.
« Reply #5 on: September 21, 2012, 08:46:01 pm »
Update, cdiff cleared and now I at 294 and <20!! Feeling much better!
04/14/11  HIV- + Diagnosis
05/15/11 Initial CD4/VL reading: 89/ 550,000
05/15/11 - Genotype Test revealed no mutations
06/01/11 -Started Atripla
07/01/11- CD4/VL 125/900
09/26/11- CD4/VL 183/90
10/20/11- CD4/VL  172/72
11/15/11- CD4/VL 185/82
12/20/11- CD4/VL 186/<20!!!!!!!!!!!!!! FINALLY UD!
02/10/12 -CD4/VL 175/70
02/14/12- New Regimen: Norvir, Prezista, Isentress, Truvada
03/05/12 - CD4/VL 203/30 :
04/06/2012: cd4 228 vl <20
05/26/2012 cd4/vl 253/80
07/25/2012 cd4/vl 249/<20
09/10/2012 cd4/ vl 294/<20
Medications:
Prevacid 30, Ativan 2mg 4x/day,Testim 50mg daily, Certavite Multivitamin with Antioxidants, Quinapril 40mg, Fish Oil 3/day, 1000mg Garlic, 2-4 G Carafate, Paxil 20mg, Dapsone 100mg, Norvir, Prezista, Truvada, Isentress.
PRN: Marinol, Baclofen, Ultrum, Patanase, Lidoderm

Offline LoboDog

  • Member
  • Posts: 82
Re: Feel so stuck.
« Reply #6 on: September 22, 2012, 08:08:49 pm »
Hey Ej,

The same thing happened to me... it took me over a year and a half to get over 200... It took a long time for your immune system to become damaged, it takes a long time to come back.

 


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