POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: allanq on October 03, 2007, 10:01:15 pm
-
Here's the news story:
http://www.bizjournals.com/triangle/stories/2007/10/01/daily25.html (http://www.bizjournals.com/triangle/stories/2007/10/01/daily25.html)
-
Hooray! Something else I've been given in connection with HIV that I will see bad results from years down the road. More nerve damage.
OK, I realize I may be off the mark and won't experience it, but I'm tired of being the world's guinea pig. Seriously.
Thanks anyway Allan... though I was aware of this information somewhat via my Roche connection several months ago. It's too bad that it had to happen as it's a rather nifty little mechanism.
OK, time to mix my fuzeon and blast it into my body with the ole Biojector.
-
Allan
The information in this press release pretty much mirrors my experience with the biojector. Initially I experienced a noticeable difference in the ISRs (injection sight reactions) between using the biojector and using syringes. That benefit disappeared somewhere around the 5th or 6th month.
While the study I was involed with called for using the biojector for a full 12 months, I opted instead (somewhere around month 5 or 6 as I mentioned above) to switch back to the syringes. Actually what I did was alternate between the two delivery opti0ons for awhile.
I didn't experience the "nerve pain" that the press release mentioned. My decision to stop using the biojector was based solely upon the benefit vs pain/ISR compared to using the syringes.
Somewhere, in the archives of the previous forums , I posted about my experiences.
Having said all that, I want to emphasize to anyone reading this, that Fuzeon (for nearly 4 years now) has PROVEN to be an effective component in my treatment regimen.
While I intend to abandon this drug as soon as Isentris (sp?) becomes available, 4 years ago when I was told I had "No options" Fuzeon coupled with other drugs proved that to be wrong.
Thanks for the link buddy.
RAB
-
Well, Whizzer gave up on the damn thing well over a year ago. It hurts like a sonofabitch. And I bruised like crazy, almost everywhere I used it.
Philly, I think the nerve damage they talk about isn't incremental and increasing, like neuropathy, but acute, and fairly immediate, which happens when you blast the drug right onto a superficial sensory nerve. So blast away, just be careful where you put the damn thing. I went just a bit too far down my leg one time, about two inches above my knee, and had a numb kneecap for a couple of months.
-
That's good to know whizzer. I'm in my 18th month with it, and while the ISR's have worsened in the past three months when I compare with experiences posted here, and with other fuzeon users in my LTS support group, I think my problems with all of it are less than the average. Isentress will be coming along right exactly when I need it though, because I'm definitely ready to stop doing injections.
There are one or two other Biojector users in my support group and they've all stuck with it too. They've been on fuzeon longer than I have so they all used the needles for a couple of years, whereas all I know is the Biojector.
I never did in my leg except the first month, and quickly gave up on that location. I do all of it in my abdomen. Doing it in my triceps didn't last long either, though it wasn't as bad as my thigh... I literally couldn't walk afterwards.
-
I am in my 20th month of using the stuff, and, while I don't use the biojector anymore, I find that my ISRs have gotten worse as well, a LOT worse in the last four or five months. I have more knots, more painful sites, and they take longer to go away. I'll be coming off the Fuzeon a few months from now, and cannot wait. I can't imagine doing this for years and years.....I'm afraid I'd end up being one great big lump.
-
It's a shame really, because as far as I'm concerned it's one of the top HIV meds available, if not THE top one.
-
I agree. And were it not for the ISRs, there would really be no noticeable side effects at all.