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HIV Health and Treatment Issues >> Treatment & Side Effects

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usign38
Newbie

Reged: 09/03/13
Posts: 1
viral load still did not suppress
      #273720 - 09/03/13 08:01 PM

I am 48 years old from Malaysia. I am an HIV patient. From July, 2012, I've been treated with Haart regime SLN 30 which is a combined of Stamyvudine, Lamyvudine and Nevrapine. Along the way, my right eye been infected with CMV Retinitis and my brain with Cerebral Toxoplasmosis. I've been through hell for this period of one year as my CD4+ Lymphocytes was 0 when i first admitted on June, 2012. On May, 2013 my CD4 count has improved to 201, cerebral toxoplasmosis has long gone and my right eye now permanently with only 30% percent vision capability. My question is : 1. My appetite does not seems to improve much. Sometimes its good but always with concurent vomitting and sometimes I does not feel to eat anymore. My weight from the day I admitted is 49kg and on 30th Aug was 48. Between that time, my weight did touched 58kg. Is it because of my viral load still did not suppress to count below 20 as it now count at 320? If that so, what can I do to improve?

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1742
Loc: Jersey Shore
Re: viral load still did not suppress new
      #273731 - 09/04/13 09:30 AM

It can take some time for your t-cells to gain and your vl to go down. I too had tox and it took me years to getoff meds for that due to slow t-cell. As for your eating , alot of times it is due to our mental and emotional thinking. To not eat is one of the easiest things for us to do. " The I don't feel like it " takes over . But if its causing you to vomit then you need to speak to your doctor. See if it is med related or eating disorder . Please stay in touch with us here. Sounds like you could use some support and there are some really great folks her. And you can Pm anyone at any time .

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Look up to the Heavens for the answers to Lifes questions .

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jeannie10
Newbie

Reged: 10/24/12
Posts: 21
Re: viral load still did not suppress new
      #274145 - 10/03/13 02:56 PM

When i first starting my meds, it was awful I didn t eat solid food for 3 months i went down to 86# , they kept telling me it would get better and it did 2 yrs later I weigh 135 now, so hang in there, oh i am sorry it didn t take 2 yrs that is how long I have had the diease, it took 4 months for me to start putting weight on and getting my appetite back.

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PozInAmarillo
Member

Reged: 07/29/14
Posts: 63
Loc: Texas
Re: viral load still did not suppress new
      #277409 - 07/29/14 08:07 PM

I too had a difficult time finding a drug combination I could tolerate that was effective. My doc was of course trying the standard protocols. I was getting very frustrated because even when we found a therapy that didnt have terrible sides my numbers were just slowly getting worse. It wasnt until i voiced my frustrations to my nurse that i realized I had a say so in what drugs I was taking. So I chose a path that my doc was very uncomfortable with but do to my persistence he finally agreed to give my own protocol a try for 3 months. Guess what. After two years of steadily worsening numbers I went undetectable in 3 months. My approach was simple. Instead of 3 drugs all from the same category, I selected 3 drugs from 3 different categories. I chose Isentress, Intelence, and Kalettra. My viral load has been undetectable ever since with zero side effects. I feel that too many docs are afraid to try something different. Sometimes you have to be proactive.

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Nobody can give you HIV. You have to take it.

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crabmanModerator
Moderator

Reged: 03/10/11
Posts: 1091
Re: viral load still did not suppress new
      #277413 - 07/29/14 08:33 PM

Why did your doctor want you on only one class of drugs? That's not a recommended protocol. Is he specializing in HIV?

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PozInAmarillo
Member

Reged: 07/29/14
Posts: 63
Loc: Texas
Re: viral load still did not suppress new
      #277414 - 07/29/14 08:50 PM

Please excuse me. I misstated. The standard would be 3 drugs from 2 different classes. Also I was frustrated with being prescribed older meds when there were several new ones that had just become available. And yes my doc is an infectious disease specialist.

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Nobody can give you HIV. You have to take it.

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crabmanModerator
Moderator

Reged: 03/10/11
Posts: 1091
Re: viral load still did not suppress new
      #277417 - 07/29/14 09:36 PM

That makes more sense. I'm currently on that protocol with the Truvada and Prezista.

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PozInAmarillo
Member

Reged: 07/29/14
Posts: 63
Loc: Texas
Re: viral load still did not suppress new
      #277418 - 07/29/14 10:09 PM

Yea. 2 nukes and a protease inhibitor would be a standard protocol. im on a protease inhibitor, a non nuke and an integrase strand transfer inhibitor. The last two had only been available a few months when i went on it. In fact all the ones I wanted were brand new. The Kaletra was the only one that wasnt brand new and even it had only been out a short time. My doc was being to conservative in my estimation He really didnt want to try this protocol but it worked and thats all that matters. At this point I wouldnt even know I had the virus if I didnt have to take the meds. I have no sides from the meds and no ill effects from the virus.

--------------------
Nobody can give you HIV. You have to take it.

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crabmanModerator
Moderator

Reged: 03/10/11
Posts: 1091
Re: viral load still did not suppress new
      #277424 - 07/29/14 11:14 PM

That's good. The meds I'm on are probably the first time I have not had side effects. I've been on pretty much most of the first three classes at this point.

I was on Kaletra sometime in the mid 2000's. I spent most of my time dealing with nausea, as I have with most of the PI's.

The Prezista on the other hand has been very easy to take. I don't boost with Norvir however, because of the gastro issues. But since I've been able to reduce my viral load down to almost undetectable and raise my CD4s from 98 to 253 in a couple of months, I'm pretty happy with what I'm taking now. I agree that we all have to be our own advocate with our doctors.

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