Meds, Mind, Body & Benefits > Questions About Treatment & Side Effects

A thread for Fuzeon users--our emerging treatment options

(1/4) > >>

RAB:
Hello Everyone:

There's another thread right now from a member new to Fuzeon and struggling with the infamous ISRs.  Some of the comments in that thread hit home with me, but I didn't want to hi-jack it, so I'm starting this thread.

I've been using Fuzeon since December of 2003.  I've used the needles that come with the kit, the Biojector, and the small gauge insulin needles that many of us are opting for.

Other than the ISRs, I've had virtually no negative side effects from Fuzeon.  The mixing isn't as difficult as some think, the injecting is actually pretty easy.  The overall impact on my daily routine is pretty minimal. (Hell  Jan has injected me at Niagara Falls!) Oh but for those ISRs this would be a perfect drug as far as I'm concerned.

I've long ago abandoned some of the injection sites recommended to us simply because the ISRs were unbearable.  Specifically the thighs.  (Lord God almighty--can anyone really inject there?)  I frequently use other parts of my body instead.  Specifically the chest (which still seems to produce the least severe ISRs) and my bum bum.

The drug has worked beautifully for me.  Not only did I attain full viral suppression, but I have maintained it now for over 3 years.  I've also heard from my doctor (with nothing I can direct anyone to to validate) that not only is there clear evidence that Fuzeon (when combined with other optimally effective drugs) does work as an effective treatment option for those of us facing resistance issues,  but there seems to be some evidence it also helps with CD4 recovery.  In other words, people using Fuzeon see higher counts.

Finally let me say this, as soon as the new integrase inhibitor becomes available, I'll run from this drug without a moments hesitation.  In fact I'll do it somewhat gleefully.  Because not only will I be rid of these damn ISRs, but I'll be able to put Fuzeon on the shelf and use it again at some point in the future if I need to (presumably--since I didn't develop resistance).

So for anyone who's been using Fuzeon for some time now,  I'm curious what your thoughts are.

1.  If you have the option to drop Fuzeon (right now it looks like September or later of this year) will you do it?

2.  Has anyone else heard about the comment that Fuzeon may in fact produce greater CD4 recovery (i.e. higher counts)?  And if so, does that fact that your CD4 count may lower if you drop Fuzeon concern you?

RAB

(Note to moderators:  ISR and Biojector don't pass the spell check test.)



allanq:
Rocky,

I have you beat by one month, since I started Fuzeon in November 2003. I've heard many people say that the 27G needles supplied with the kit are way too big, but I've tried smaller needles and got the same damn injection site reactions. Besides, it's not the injection itself that is painful; it's what happens a few hours after the injection. I've done all the "right" things, but I still get the reactions. As with you, the ones on my thighs are the most painful, so I try like hell to avoid that area. Sometimes, it's hard to find a spot that's not already sore or full of those hard nodules that come with the ISRs.

As soon as the Merck integrase inhibitor becomes available, I will definitely switch. My doctor thinks this is a great idea. I can't wait to stop those twice daily injections. It will be a huge improvement in the quality of my life.

I haven't heard about Fuzeon producing greater CD4 recovery. My CD4's remain consistently just under 200, despite my undetectable viral load. However, I started with a CD4 count of 12. That might have something to do with it.

I've seen reports of Fuzeon contributing to peripheral neuropathy. (I can't remember where I saw them.)  Has anyone heard about this? My PN started to get worse after I began doing Fuzeon, but I'm not sure if this is just a coincidence. PN is not listed as a side effect in the drug information supplied by Roche.

Allan

RAB:
Good morning Alan

I have read that PN can be a side effect of using Fuzeon.  Though I'm not sure to what extent (that is % of patients who experience it).  The drug info on Fuzeon here at AIDSMeds lists PN too.  I seemed to have dodged that bullet so far.

You're right in clarifying it isn't the injection that is painful (well except for the Biojector), it's the resulting reaction.  I think it has to do with the volume of drug we are actually injecting along with proper technique.  Some of my most awful ISRs have happened when I got the needle in too deep and probably injected into the muscle.

It's reassuring to me that you've pretty much decided to make the switch to the Integrase Inhibitor when it becomes available. 

I am grateful for the results this current regimen has given me and wouldn't want to risk losing control of the virus simply because I wanted to get away from Fuzeon.  But it sounds like the new drug is going to give us a reasonably safe opportunity to do just that.

That's exciting as far as I'm concerned and makes it that much easier to continue to tolerate these ISRs.

Here's to a new option coming soon!   ;D

I'd still be curious about the statement that Fuzeon seems to produce greater CD4 recovery.  My doctor only treats HIV and HEPC, so I doubt he'd say something like that without having some reason.  It's obviously anecdotal though so probably not something we'd ever be able to confirm with good data.

RAB

jjmcm:
Rab, do you think the CD4 increases are due to Fuzeon or the possibility that the lower VL creates an environment for a gradual rise in the CD4's?

I have actually thought extensively about what I might do when the Integrase Inhibitor is approved.  Would you stay on the Kaletra and Invirase and just swap the Fuzeon on or would you make additional changes to your regimen like using Prezista?

I just don't know whether Prezista is as strong as Kaletra and Invirase together when they are functioning well.  Prezista resistance does seems to develop fairly rapidly when there are not enough other effective agents in the mix.  I now have a friend that received both Prezista (TMC-114) and the Merck Integrase, (along with Truvada) and while initially undetectable, developed resistance within six months. 

That is why personally since I have not been on Fuzeon as long as you and Allan that I will probably hold off until I see a little more data on the Integrase.  In particular, the success of people coming off a Fuzeon regimen and maintaining suppression with the Integrase Inhibitor.

I would imagine it will likely increase the possibility of success if you start with an undetectable VL.   Given the resilience of my virus in the past, I think I would certainly monitor it closely until I confirmed that it was indeed working.

As far as PN, I have suffered varying degrees of that since the D4T and Videx days.  I don't know how much of it is HIV, how much is the meds, and how much is just this body getting older.

Allan, going from 12 CD4's to almost 200 is great!  I know guys that can't get theirs out of low double digits after hitting that level. 

Rab, thanks again for encouraging me to stay on Fuzeon back when I was initially wavering.  It is a nice feeling to see the lab results come back with VL below 50. 

--JJ

allanq:
I just got back from a visit to my HIV doctor, and I was very happy to learn that I have been approved for the extended access program for the Merck integrase inhibitor. I got my first container of 60 pills this morning. (One pill, twice a day, with or without food.) I'll do my last Fuzeon injection tonight and start the Merck drug tomorrow morning.

Results from the clinical trials so far indicate that the Merck integrase inhibitor is a potent suppressor of the HIV virus, so I feel confident that this will work out for me. My doctor said the drug should be approved by August or September.

I'm keeping my fingers crossed and looking forward to the healing of all those painful welts and nodules.

I'm going to have lab work done a month from now. I'll keep people posted on my results.

Allan

Navigation

[0] Message Index

[#] Next page

Go to full version