POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: AndyArrow on March 30, 2008, 09:40:56 am
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Does anyone have any recommendations on how to limit some of the site reactions I have from the Fuzeon injections. I seem to get worse reactions (more painful) in my legs. Other then that I've been able to tolerate the medicine very well.
Thanks!
AA
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Andy, I was on Fuzeon for 27 months. I was forced in the last six months to inject more on my legs because I simply had run out of spots on my abs, chest, and back. (my partner injected me there)
I was getting large reactions that made it painful to walk in jeans and turn in my sleep. You can try the anti-itch cream (benadryl) over the injection sites, but it does not help that much. Once you start getting bad reactions they tend to get worse.
My doctor finally decided that even though it was doing a good job, we had to dump it.
I swapped it out for Isentress about six weeks ago.
Good luck.
--JJ
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Thanks JJ --
I'm not really sure what I could change it out too since I already take Isentress. Currently, take Fuzeon, Isentress, Prezista, Norvir & Truvada. It seems to work really well but can be difficult to walk or do stairs. Guess I'll have to check with the doc again.
AA
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Roche is going to send a nurse out to see if she can give me some tips to lessen the injection site reactions.
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Yeah, I was going to suggest that. I'm friends with one of the Roche nurse people here in Philly and they're very helpful I've heard. When I was on Fuzeon I was enrolled in the Biojector2000 study so it was not a needle that was used. Unfortunately it didn't end up getting FDA approval, but I quite liked it and my ISR seemed less than others.
http://www.bioject.com/biojector2000.html
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Thanks JJ --
I'm not really sure what I could change it out too since I already take Isentress. Currently, take Fuzeon, Isentress, Prezista, Norvir & Truvada. It seems to work really well but can be difficult to walk or do stairs. Guess I'll have to check with the doc again.
AA
I have to say I don't think I've seen anyone on that combo -- like I told you in a PM, I'm on the same combo as you excepting the Fuzeon, which was switched out in November for Isentress. Why did your doctor keep you on Fuzeon when he must have added Isentress at a later date (assuming this, as it was only approved in November, though of course you may have been on a study).
Just wondering what his logic is in this combo. Kind of seems like overkill to me, but what do I know?
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I have to say I don't think I've seen anyone on that combo -- like I told you in a PM, I'm on the same combo as you excepting the Fuzeon, which was switched out in November for Isentress. Why did your doctor keep you on Fuzeon when he must have added Isentress at a later date (assuming this, as it was only approved in November, though of course you may have been on a study).
Just wondering what his logic is in this combo. Kind of seems like overkill to me, but what do I know?
Actually, I was previously on a different reg until Nov. Started all together in November after Kaletra seemed to stop working. But according to the blood work I wasn't resistant so they aren't sure why it stopped.
AA
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Andy,
I agree with Philly on this one. Isentress + Prezista/Norvir + Truvada is generally an effective combination. It is possible that the Fuzeon that is causing you such pain isn't even necessary.
It's a difficult decision to just quit the Fuzeon, since you can't be sure if it is playing a role in suppressing your virus. But, if you do require an extra drug to stay undetectable, maybe Intelence could be a suitable replacement for the Fuzeon. Intelence is an NNRTI, but it can be effective even if you are resistant to other NNRTI's. I'm just guessing here, but it's worth exploring.
When I was on Fuzeon, I had the Roche nurse visit me. The nurse's suggestions helped for a while, but after a few months, the injection site reactions were worse than ever. With most other meds, the initial side effects often get better after a few weeks, but with Fuzeon, the ISR's usually get worse after you've been on the drug for a while. (I was on Fuzeon for 3½ years.)
I would definitely discuss this with your doctor to see if there is a way to get off the Fuzeon.
As a side note, I was on Fuzeon, Aptivus/Norvir, Sustiva, and Truvada for almost two years, when I had to quit the Truvada because of kidney problems. It turned out that I remained undetectable without the Truvada. So I had been taking an expensive drug that was providing no benefit.
Good luck.
Allan
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Glad Allan weighed in, as I do really think that Fuzeon in this combo is overkill. Don't get me wrong -- I'm a firm believer in Fuzeon and it's a great, great drug (excepting of course for the method of delivery). From what I've been told, it's also unusual to develop resistance to it (does happen though) and there's no reason that if you decide to go off of it and just do the rest of the combo (which would be the very exact same combo I am on) and see that your numbers are fine you might be happier. If you see you're numbers being unsatisfactory after dropping Fuzeon there's absolutely no reason that you couldn't add it back in.
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Thanks Allan & Philly for all your advice. It will really give me something to talk over with my ID people.
While I hate needles I'm certainly used to it by now. I think the Fuzeon my also be partially responsible for the numbness in my feet since that is listed as a possible side effect, of course it could be the Zerit from a long time ago.
I'm greatful for the insight.
AA