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Author Topic: Fuzeon -- worth the 20 minutes of mixing?  (Read 3999 times)

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Offline LES Jake

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Fuzeon -- worth the 20 minutes of mixing?
« on: September 19, 2006, 10:25:44 PM »
20 minutes a day to mix the stuff up to inject and then possibly get a red rash from the injection? Are the results worth this time and effort? Nothing works for me other than 3TC, so I'll do it, but I'm wondering what my brothers and sisters out there think of this? Will also be taking Prezista/Norvir and TMC-125. Thanks friends and family. Jake

Offline dgls44

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« Reply #1 on: September 20, 2006, 12:38:17 AM »
« Last Edit: December 24, 2006, 12:15:48 AM by dgls44 »

Offline newt

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Re: Fuzeon -- worth the 20 minutes of mixing?
« Reply #2 on: September 20, 2006, 03:07:05 AM »
Yes, perhaps, because there are several good drugs in the pipeline that will come out as tabs in a year or two/three, so this is a short(ish)-term option, and one that works well, but it's not a permanent arrangement. Not saying that injection site reactions and the time, detail in preparation etc are the best things in life though...

- matt
"The object is to be a well patient, not a good patient"

Offline RAB

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Re: Fuzeon -- worth the 20 minutes of mixing?
« Reply #3 on: September 20, 2006, 10:54:29 AM »
I mix 2 vials at once (usually in the evening), takes less than 5 minutes.

Fuzeon can now be mixed up to 24 hours in advance (but not longer!), and does not need to be refrigerated.


To answer your ? about time and effort.  For me absolutely.  Been using Fuzeon since December of 03, VL <50, CD4 looking good in the 700s.

Matt is right though, about several new drugs coming in the pipeline, and this is a "shortish term" option.  I'll be glad when I can drop this drug only cause of the ISRs.


Offline David84

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Re: Fuzeon -- worth the 20 minutes of mixing?
« Reply #4 on: September 20, 2006, 11:47:23 AM »
I have been on Fuzeon since May'03.. thats about 2200 injections! Yes, like many things its a pain but soon becomes routine. I mix my evening and following am dose 1/2 hour before bed and throw am in fridge. I was unaware that it could sit out now. Somedays it is like an Easter egg hunt looking for the next site.. but I'm sticking with it.. like dgls44 my options are limited.  Best of luck to you.

Offline RAB

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Re: Fuzeon -- worth the 20 minutes of mixing?
« Reply #5 on: September 20, 2006, 12:21:49 PM »
I need to back off my statement about not needing refrigeration.

When I entered the Biojector Study more than a year ago, the pharmacist in Seattle told me explicitly that it no longer needed to be stored in the refer.  I remember that conversation clearly cause I quizzed him on it for a good 5 minutes.  So for over a year now I have not kept it chilled.

However, if you read the pamphlet and check the web site for Fuzeon, both still instruct patients to chill the pre-mixed dose.  I just called the Fuzeon help desk and they say the same thing.

This is very concerning for me cause as I just said, for over a year now I haven't kept the premixed vial chilled.  It obviously hasn't hurt my labs any but still I am troubled by this.

Has anyone else using Fuzeon been told the same thing?


Offline Christine

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Re: Fuzeon -- worth the 20 minutes of mixing?
« Reply #6 on: September 20, 2006, 03:50:08 PM »
I started on the Fuzeon study t-20, and was on it several years. For me, at the time it was one of the only meds I was not resitant to. The time factor was not so much of a burden, but the ISR's did become pretty bad for me. I don't second guess taking it though. The mixing did become routine after a while.

I would also mix two vials in the evening. I would mix before dinner, then do the shot after dinner. I kept the mixed vial in the fridge, then would pull it before breakfast to warm, then do the shot after eating breakfast.

My opinion, if it makes your vl load drop, and your t-cells rise, it is worth it.
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline whizzer

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Re: Fuzeon -- worth the 20 minutes of mixing?
« Reply #7 on: September 20, 2006, 05:20:29 PM »

When you first mentioned not having to refrigerate Fuzeon, I checked their website to see if anything had changed.  They still recommended refrigeration.  I then asked the head of the study I'm in that provides me my Fuzeon - no one had heard about not refrigerating it, but they referred me to the clinical trials pharmacist.

The clinical trials pharmacist checked around and said she could find nothing that stated it was OK not to refrigerate it.  She said it was not so much that the Fuzeon was inactivated, but that since there are no preservatives in the powder, that bacteria could grow in the vial if it was not kept chilled.  Fuzeon, being a polypeptide protein is, essentially, meat.  I wouldn't leave my chicken out for 24 hours without refrigeration, and I keep my Fuzeon in the fridge.

What I want to know is how long it can be kept safely without refrigeration.  Like, say, can I mix it ahead of time (say, a couple of hours)  and head out to dinner with friends with the vial in my pocket and shoot up in the bathroom after dinner?  No one has given me an answer to this question.


Offline Rusty

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Re: Fuzeon -- worth the 20 minutes of mixing?
« Reply #8 on: September 21, 2006, 12:51:51 PM »
I started Fuzeon in April 05, Along with Tipranavir and Ritonivir. I was close do death at that stage as I had a bad dose of TB.
I had used every other option available until I started on this little lot. It worked a treat and my viral load is below 50 which has never happened before (positive for 20 years) my CD4 count is still crap at the mo at 80, due to nearly 12 months of TB treatment which is a big pain in the neck as it reoccured.
To be honest the T20 is a pain to take and I hate it, but its done its job.
Changing meds in December to TMC 114 and TMC 125, dont think you really need T20 as well . I certainly am dropping the T20 its too much to handle, I use smaller needles as well and the site reactions are always really painful, crippling in fact at times. I always have doses mixed in advance stored in the fridge.

Offline dgls44

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« Reply #9 on: September 22, 2006, 11:13:18 AM »
« Last Edit: December 24, 2006, 12:16:31 AM by dgls44 »

Offline Miss Philicia

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Re: Fuzeon -- worth the 20 minutes of mixing?
« Reply #10 on: September 23, 2006, 12:01:31 AM »
I didn't get my VL to undetectable until I went on this (first time in 13 years).  Though I also went on Prevista at the same time so I guess I can't really say which did what.
"Iíve slept with enough men to know that Iím not gay"


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