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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Infuzeeon - anybody tried it?
      #242788 - 10/19/08 09:10 AM

My AIDS specialist has said that she would like me to take Infuzeon. The HIV count in my spinal fluid is @10,000 per ml which is higher than the count in my blood. She thinks that perhaps Infuzeon may help to clear out the virus in my brain and CNS.

She has spoken to my psychiatrist about my depression and believes that I may be able to be more compliant with a treatment regimen than in the past. The Black Dog of Depression made me lose all hope and I had a great deal of trouble taking the meds.

The neuropathic pain in my feet and legs is more under control with Lyrica and I have found that the tremours caused by Lyrica have greatly subsided; however the weakness in my legs and arms remains. The wheelchair and the disabled ride services have given me more freedom to get about on my own. I feel much more free and comfortable. Maybe I could be compliant with a new med regimen.

If the side effects of Infuzeon are bad, however, compliance will become a problem again. I can't bear too much more pain and discomfort. Together they make living difficult and I begin to think of going to sleep, again.

I know, "Boo hoo for me", but the virus does wear you out after 24 years.

So, poppets, what does it feel like to take Infuzeon? What is your quality of life? I don't work anymore, so I have more time to devote to a new treatment regimen.

Gosh, I sound pathertic, but there it is.

ScotCharles

--------------------
Life is a river.
Carpe diem.

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Bear60
Legend

Reged: 12/21/05
Posts: 1390
Re: Infuzeeon - anybody tried it? new
      #242789 - 10/19/08 12:12 PM

Charles:
I have known several people who included Infuzeon in their treatment. I have not heard it being used in quite a while however. Good luck.
Joel

--------------------
6 ft tall poz bear in Philadelphia

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Jackie__Blue
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Reged: 01/20/07
Posts: 1186
Re: Infuzeeon - anybody tried it? new
      #242791 - 10/19/08 06:20 PM

Infuzeon caught my eye, but I realized I was thinking about Fuzeon (T-20). I looked up Infuzeon and didn't see anything, so at the risk of being totally off I wondered if you had meant Fuzeon and I'll tell you what I know about Fuzeon.

My husband was accepted into a 48 week clinical trail for T-20 - Fuzeon. I credit it for saving his life.

At the start of the trial he had just been in the hospital for a month, during which time , I was once told he wouldn't live to see the end of the day. He had pretty well gone through the current combinations and salvage treatment was all that was left. His viral load was in the millions....more than they could measure. His CD4 was 7.

He was also on Kalatra, which was pretty new at the time. I can't remember the two others he was taking then.

Anyway. Side effects. One major one…..welting at the injection sites. The shot is subcutaneous and you give where you can find fat. Problem if you have wasting issues. Arms, legs, stomach, butt. I learned to give him the shots in his arms and you will want your partner or someone to learn to do that. It will give the other areas a break. Rich had terrible welts at the injection sites and they would last a couple of days. Rubbing the injection site and putting ice on after the shot would help some, but welting was a major issue. He did stick with the study, but at the end of 48 weeks he opted out of the program. Still I think that the Fuzeon jump started him back and the 48 weeks he did is what was able to turn his health around.

I had heard that there had been changes made to how it was injected. And that the process is now easier. But even with that, I really think you need to start this treatment with the expectation that you will not be doing this the rest of your life. At least from our experience we felt it was vital in getting things turned around, but then he could move on from it.

I know my viewpoint isn’t as one taking this treatment. And I know the while I could sympathize with my husband I could not empathize with what he was going through. Still from the viewpoint of someone that wasn’t ready to let go, I’m damn glad Fuzeon came along, and I’m thankful for the extra 10 years we’ve been blessed with so far.

Hope something here helps.


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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Infuzeeon - anybody tried it? new
      #242801 - 10/20/08 12:55 PM

Yes, I think I did mean Fuzeon, T20 sounds like some sort of biological warfare weapon to me. I shan't ever be able to call it that. Thanks, you were very helpful.

ScotCharles

--------------------
Life is a river.
Carpe diem.

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OhTam
Regular

Reged: 02/03/06
Posts: 33
Loc: Ohio
Re: Infuzeeon - anybody tried it? new
      #242948 - 10/28/08 11:25 PM

IZPOZ uses fuzeon last I knew. Co's doc recently discussed it with us and told us that it does welt at the site but otherwise side effects weren't bad. They have talked about starting him on that and have told us its one of the last options, a last line therapy. We see her again the third so I will see what I can find out about it.

--------------------
if it weren't for all the trash in this world we wouldn't need garbage men!

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