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Author Topic: just diagnosed 2/24/10  (Read 2871 times)

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Offline cwbyway102

  • Member
  • Posts: 30
just diagnosed 2/24/10
« on: April 27, 2010, 08:06:14 PM »
Hi guys,I'm new to the forum but i just had to tell someone this news.I was diagnosed in Feb. with CD4<20 at 3% and 1450000 VL.I had PcP pneumonia and had to be intubated for a couple days.I've been sick for 9 months and been to the doctors 10-12 times in that period trying to find out what was wrong with me.I had thrush,pcp pneumonia twice(the first time i had to deal with it on my own cuz the doctors said i had bronchitis.)and i lost 55lbs.not a single doctor suggested i be tested for aids.when i went to the emergency room in February the doctors were in the middle of telling me i had bronchitis again when a 24 year old med student walked in the door and the second he saw me he said "i know whats wrong with you" then he told the doctor to test me for aids and sure enough i was poz.
 so this brings me to my news I'm only bringing this up because my doctor said it was a little unusual.I got my first labs back since being in the hospital and my VL went from 1.45 million copies/ml to 1348 in just a month and a half.my CD4 is at 57 at 6%
  I'm on just Truvada and Reyataz without Norvir.my doctor says since I'm taking the higher dose of Reyataz(400mg) then i dint need the Norvir,which is a concern since everything Ive read says i need to be on Norvir also.Any suggestions?
Feb 22.2010-hospitalized PCP pneumonia
Feb 24 2010-diagnosed CD4 <20 3%    VL 1450000  started Truvada & Reyataz 400mg
April 14  CD4 57  6%  VL 1348
June 24  CD4 97  8%  VL 204
June 25 added Norvir decreased Reyataz to 300mg
August 4 CD4 107 10% VL 107
Nov 3  CD4 144 11%   VL UD
Dec 6  CD4 185  14%  VL UD
Jan 10 CD4 181  12%  VL UD
Mar 29 CD4 294  16%  VL UD
June 29 CD4 211 14%  VL UD
August 21 Switched out Truvada for Epzicom
Sept 29  CD4 220  15%  VL UD

Offline Jeff G

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  • Member
  • Posts: 11,783
  • How am I doing Beren ?
Re: just diagnosed 2/24/10
« Reply #1 on: April 27, 2010, 08:13:36 PM »
Welcome to the forums cwby , This is a great place to be with some wonderful support .

I will leave the advice about your meds to others here , they are better qualified to answer your questions . 

Offline Hellraiser

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  • Posts: 4,136
  • Semi-misanthropic
Re: just diagnosed 2/24/10
« Reply #2 on: April 27, 2010, 09:20:41 PM »
Welcome to the forums, and I'm so sorry that your numbers were poor initially but that massive drop in Viral Load is VERY very good news, once your VL is suppressed well your CD4s should rise slowly but surely.  I'm a little concerned you mentioned you had thrush, PCP, and you were losing large quantities of weight and nobody suspected HIV?

As for your regimen, I'm not exactly sure why they wouldn't put you on Norvir although I could swear I've heard of people using larger quantities of Prezista without Norvir before.  Did they do a phenotypic resistance profile?  I'm a little curious why they wouldn't put you on Atripla unless you have a history of issues with mental illness or resistance to it.  Were you consulted about which regimen you might want to take initially?

Anyway, here's hoping you find this place to be a bastion of support and guidance.  If you need anything from me personally feel free to Private Message me once you've reached the required 3 forum posts.

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: just diagnosed 2/24/10
« Reply #3 on: April 28, 2010, 10:08:49 AM »
Welcome to forums

I had 3 or 4 months of pneumonia before a diagnosis. Was it a relief to you to finally know what was wrong?  It was for me.

I hope you are starting to feel much better now.  It can take a while to come back from repeated pneumonias, but I remember looking back at the two or three month mark and feeling very grateful.  All that is written up in my bio here (click anyone's avatar to read their bios).

As far as your medication question -- the prescribing info for reyataz  (http://packageinserts.bms.com/pi/pi_reyataz.pdf) and the US treatment guidelines seem pretty clear in recommending a Norvir booster when are using it with Truvada.  The higher-dose, unboosted, Reyataz is more often used with Epzicom. 

Which brings up another issue.  Since it sounds like your doctors do not routinely see a lot of HIV patients, how comfortable are you with the HIV doctor they referred you to?   It may feel a bit difficult to do this, but it is really important that you talk to your HIV prescribing doctor about his/her experience with HIV.  Patients tend to do better when they have an experienced HIV doctor who routinely sees a lot of HIV patients. 

Best wishes
A

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline peteb

  • Member
  • Posts: 202
Re: just diagnosed 2/24/10
« Reply #4 on: April 28, 2010, 11:08:20 AM »
I was diagnosed about the same time your was
they kept telling me I had thyroid problems and diabetis went down from 138 lbs to 94
I finally got really sick  , went to the er they told me I had Aids cd4 45 vl 300000
I am now on Atripula CD4 188 VL 30000  I also have Valley Fever wich just made things worse
my whole insides had bacteria
esophagus lungs not a pretty sight
wish you all the luck
Pete

Offline veritas

  • Member
  • Posts: 1,410
Re: just diagnosed 2/24/10
« Reply #5 on: April 30, 2010, 05:25:11 AM »

cwbyway102,

Tenofovir (in your truvada) significantly reduces blood levels of reyataz. When taking truvada, your reyataz should be boosted.

I would follow Assurbanipal's advice and have a talk with the doctor and I would probably look for a more experienced doctor, anyway. That med student was on the ball (deserves a thankyou). Your doctor should have caught the symtoms.

Let us know how you make out,

v






Offline cwbyway102

  • Member
  • Posts: 30
Re: just diagnosed 2/24/10
« Reply #6 on: May 04, 2010, 12:12:34 PM »
Thanks for the replies guys.I've ended up switching doctors.My other doctor and I just weren't seeing things eye to eye.I refuse to be seen by a doctor that treats you like a number.
 Anyway I like my new doctor,but we are still on the subject of medication.He said the reason i'm not on the Norvir is because i'm taking the higher dose of Reyataz (400mg).He did say that he will add the Norvir depending on my next lab results which will be at the end of this month.
 I'm actually feeling better now than I have in over a year.Once they figured out what was wrong with me and started giving me the right medication,i've been feeling better and better every day.This has been a big jolt to my system because before the PCP pneumonia,the worst thing ive ever had was a cold.I've always had a very strong immune system.Right now since my CD4 is so low I worry about OIs.I get a little paranoid at every little muscle ache,headache,hot flash I have,and I'm not sure how to deal with that.I'm taking azithromycin and bactrim for prophalaxys,but I still get a little edgy when I feel any kind of change in my body.
 Thanks again for the replies.
Feb. 24- CD4<20 3%   VL  1450000
April 14-  CD4 57 6%    VL  1348
Feb 22.2010-hospitalized PCP pneumonia
Feb 24 2010-diagnosed CD4 <20 3%    VL 1450000  started Truvada & Reyataz 400mg
April 14  CD4 57  6%  VL 1348
June 24  CD4 97  8%  VL 204
June 25 added Norvir decreased Reyataz to 300mg
August 4 CD4 107 10% VL 107
Nov 3  CD4 144 11%   VL UD
Dec 6  CD4 185  14%  VL UD
Jan 10 CD4 181  12%  VL UD
Mar 29 CD4 294  16%  VL UD
June 29 CD4 211 14%  VL UD
August 21 Switched out Truvada for Epzicom
Sept 29  CD4 220  15%  VL UD

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: just diagnosed 2/24/10
« Reply #7 on: May 04, 2010, 01:30:23 PM »
Your numbers improved a lot in a single month.  So I think before you know it you'll be out of the AIDS level of CD4 count.  Just keep up the adherence to the medication.  I'm still confused why no Norvir in your combo though.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: just diagnosed 2/24/10
« Reply #8 on: May 04, 2010, 09:12:17 PM »
... I'm actually feeling better now than I have in over a year.Once they figured out what was wrong with me and started giving me the right medication,i've been feeling better and better every day.This has been a big jolt to my system because before the PCP pneumonia,the worst thing ive ever had was a cold.I've always had a very strong immune system.Right now since my CD4 is so low I worry about OIs.I get a little paranoid at every little muscle ache,headache,hot flash I have,and I'm not sure how to deal with that.I'm taking azithromycin and bactrim for prophalaxys,but I still get a little edgy when I feel any kind of change in my body....

Glad to see you back Cwbyway, and it's great you are responding so well to the medications.

On the paranoia, well, to be honest you have some reason to be nervous about your health still .  Some level of worry probably just means you are a realistic person. 

There's been a lot of studies that show that if you can get your tcells up, your life chances are about as good as people without HIV.  That's pretty good news.  But the flip side of those studies is that most of the bad things that still happen, happen when your tcell counts are low.  So, it makes some sense to be concerned.

But you need to keep things in perspective:

First, the overwhelming majority of people with low tcell counts at diagnosis, do just fine in the end if they have access to and use modern medicine.  It can be a longer or a shorter journey back to health, but a lot of us have been in your shoes and are doing fine a few years later.

Second, you have already made it past a lot of the issues where things can go wrong (you've gotten a diagnosis, made it through PCP, started on HAART without significant allergic reactions or other complications).  So you are going to be ok if you can stay focused on taking care of yourself and taking your meds.

Probably the best thing you can do is to channel that sense of worry into constructively improving your health. There are steps you can take to protect a weak immune system -- many of them the things we were supposed to learn in kindergarten.  But it might be worthwhile to review whether you are doing all the basic hygiene, handwashing, care in food preparation etc.  And for many people it also serves as a wake-up call to reevaluate priorities in life, both physical and mental/spiritual well being.

So sure, acknowledge that worry.  But don't give in to it.  Channel it, use it...

Be well
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

 


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