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Author Topic: Should Fuzeon still be considered Salvage Therapy?  (Read 11919 times)

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Offline Miss Philicia

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Should Fuzeon still be considered Salvage Therapy?
« on: April 10, 2007, 02:17:19 PM »
OK... guess I'll start a thread in this new section.

As many of you know I have been on "Salvage Therapy" of Fuzeon and Prezista for the past year (well, really 11 months).  Short story, I've had a high level of PI resistance ever since the genotype testing was available, and had never been able to achieve an undetectable viral load, though my VL always stayed more or less stable at around 30,000.  My cd4's during this time kept rising and before going on this treatment were in the 500's -- not shoddy.  My % was around 34 -- not shoddy either.  Obviously though I was resistant to PI's they weren't totally failing me, or that was the consensus as they kept me on them and in fact had me on two at once, plus other things.

Anyway, speeding up to today my VL once going on this new treatment immediately went down almost to undetectable, and was at <50 by the 2nd month, so that was finally achieved after a long hard slog.  However, my cd4's also shot up wildly, exceeding 1000 the 2nd moth though the real average now is more in the upper 800's or lower 900's -- still, one could not reasonably ask for more.  Also, my % went up remarkably and now rests at an amazing 42%.  Basically I'm physically a reinvented individual, as the unsupressed VL for a decade really decayed my body and I was very, very prone to fatigue, and I also consequently looked very ill.  Additionally I went from daily diarrhea to almost no diarrhea... immediately.

My question is this:  in light of such, and I can back this up by saying that everyone else in my LTS support group I go to who are all on the same treatment regimen and have had similar results (if you look at overall % marker improvements from what their numbers were commencing treatment) should fuzeon even be considered as a last resort "salvage therapy"?  I know everyone has been forced to think of fuzeon in this manner, as did I before starting it... horrified at the prospect that I was without alternative medication choices and forced to finally resort to sticking needles in my body at home (for the record, I actually use a needless Biojector 2000 though it has not gotten final FDA approval yet... I managed to get on a trial with it -- however it's still a more complicated process than popping a pill, so it's a subtle non-issue in this topic).

For those LTS on Aidsmeds, those who have and/or are experiencing treatment failure, I have noticed many have not mentioned going this route with fuzeon, certainly in light of the many GI complaints I wonder why you have not? -- as it's injected it bypasses any GI issues... another HUGE plus in my opinion.  I'm not going to single out any fellow posters, so I'll just leave it a general question.

And for others reading here, would you advocate fuzeon being used more in treatment even if it's an injectable, if you were relatively assured such promising lab numbers?  Or is it the pay off not worth it to you because of the method of delivery?  Also consider if you are willing to have the trade of an injectable for the relative lessening in any GI issues?

I hope my line of questioning is clear, as it's a subject that surfaced at my support group last night.  All of us were in agreement that it seems this treatment regimen should be pushed by the medical community on more people, instead of holding it in reserve considering the phenomenal results it give patients with little to no side effects.  The only negative is the delivery method, and once you get past the first couple of weeks it's a relative breeze (though I'll add there ARE a small group who have injection site reactions and stop -- it's a distinct minority).
"Iíve slept with enough men to know that Iím not gay"

Offline jack

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #1 on: April 10, 2007, 02:38:30 PM »
is it the fuzeon or the prezista? I was on Fuzeon  a couple of months,before I developed an allergic reaction,but my numbers didnt really do much in that two month period. I know thats not giving it much time.
I started prezista in a trial and am still on it. I am also undetectable for the first time,was always 5000 to 30000,and my ts have gone from 200 to 350. I am experiencing diarrhea, but not on a daily basis,and I do feel much more energetic and am in a much better mood.

Offline Miss Philicia

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #2 on: April 10, 2007, 02:46:06 PM »
Well yes, I should have been more clear jack.  At first TWO years ago they though of putting me on just Fuzeon to supress my VL, but because the VL was at least stable and my cd4's continued to go up slowly they decided to wait because it was the feeling that the combo of it with Prezista, then in phase 4 trials would be better.  I had trouble getting on the drug trial until the final months because my cd4 count was higher than the cut off amount, but they finally got me on.

The others in my support group are all on the combination of the two, but it's not important to the question I ask.  The combination of prezista with fuzeon is still better than prezista alone.  I'm sorry that you developed an allergic reaction, as it seems very few people do.  What exactly was the reaction?
"Iíve slept with enough men to know that Iím not gay"

Offline jack

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #3 on: April 10, 2007, 03:16:00 PM »
fever and chills. didnt start till around middle of second month,i think,but its hard to remember. The company and Dr. told me to stop it. At that time it was the only drug left for me.  I waited a week and restarted, and in second week the fever and chills started again. After that they put me in a trial for a drug made by Incyte,that seemed to produce good results, but it did not pass phase two. Seems several people had sever kidney problems. Fuck me, I bought the stock cause I was having such great results as well as most at my location. Of course it got killed,so that is my most expensive drug treatment to date. From there they snuck me into a Kaletra only trial and then Kaletra/truvada. When those failed I moved on to Prezista trial,which is the first drug, and I have taken all of them, that I doesnt make me sick and tired.
The question you ask is whether Fuz should be a first drug, rather than last resort and  I would have to ask the same of Prezista. Has my system just become to immune to all the toxins in these drugs or is this drug really superior to others as far as side effects are concerned? Why subject people to poisons like Crix and Sustiva?

Offline Miss Philicia

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #4 on: April 10, 2007, 03:23:08 PM »
No, I don't mean to imply "first drug" just not relegated to "salvage" -- obviously nobody is going to put someone newly diagnosed on an injectable before just trying out.  If I had meant "first drug" I'd not have relegated this topic to the new "Long Term Survivors" forum.

btw:  for those not familiar with the upcoming Biojector fuzeon delivery alternative you may want to read about it:

http://www.bioject.com/biojector2000.html
"Iíve slept with enough men to know that Iím not gay"

Offline jack

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #5 on: April 10, 2007, 03:31:05 PM »
i guess we have a failure to communicate as usual. Sorry, I have a problem keeping up with all the new terms, I was on salvage and fuz before they called it salvage. I see what you mean.

Offline Moffie65

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #6 on: April 10, 2007, 06:20:39 PM »
Philly,

I have been haunted by your post all day long and being in the position of having ongoing GI problems from the AZT in my Trizivir, I have tried to stay away from going to shots because of my inability to render shots to myself. 

Your original question in the lead in has a simple but probably not well known answer.  Fuzeon has been named Salvage Therapy, and remains so, for the simple reason of cost to the provider.  Most insurance companies, and I know ADAP for sure, shy away from wanting to pay for Fuzeon due to it's horrific cost.  I know last year it was, even with discounts, running about $56,000 a year for each patient.  This fact, and the fact that it is usually used by long termers, has pushed it into the recesses of usage, and given the description, Salvage Therapy. 

Now, you asked this question also. 

"I know everyone has been forced to think of fuzeon in this manner, as did I before starting it... horrified at the prospect that I was without alternative medication choices and forced to finally resort to sticking needles in my body at home "

As stated above, this is the main reason I have shyed away from it's use, that and watching RAB go through his very anal time keeping and mixing care.  I have heard that before the end of the year we are supposed to get a new class of drugs that are showing incredible efficacy with us old timers, and I am holding out for that.  Also, my partner is not capable of giving me shots because of his aversion to needles, and his tendancy to vomit balistic when he sees them.  My ability is also in question.  Bioject is the answer and when the VA comes around to using this method, then it becomes a no-brainer. 

One other thing is important and that is the viruses mutant capability.  It is my understanding that some mutations are not susceptible to the work of Fuzeon, and I have been told that mine is such, but there has been no attempt to try it with me.  I have been given the option by my doctor, and I am really tempted at this point to try it out to see if it would work, because my current state of health is really kicking my ass.

Just a few thoughts to add.

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Miss Philicia

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #7 on: April 10, 2007, 06:43:09 PM »
First I'll state that, at least where I live, there is no issue with ADAP funding fuzeon.  Second I'm not sure what you mean by your reference to "anal time keeping and mixing care" -- are you referring to the process of mixing the saline solution into the fuzeon powder?  Wow... it takes about 2 seconds to do, and then sits on a table for 20 minutes and then its good to go.  Why are you not able to inject yourself even if you had to use needles? 

Finally I'm not sure about your discussion of mutant capability: It is my understanding that some mutations are not susceptible to the work of Fuzeon, and I have been told that mine is such, but there has been no attempt to try it with me.  What do you mean by this exactly?
"Iíve slept with enough men to know that Iím not gay"

Offline Moffie65

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #8 on: April 10, 2007, 07:52:11 PM »
First I'll state that, at least where I live, there is no issue with ADAP funding fuzeon.  Second I'm not sure what you mean by your reference to "anal time keeping and mixing care" -- are you referring to the process of mixing the saline solution into the fuzeon powder?    Why are you not able to inject yourself even if you had to use needles? 

It is my understanding that some mutations are not susceptible to the work of Fuzeon, and I have been told that mine is such, but there has been no attempt to try it with me.  What do you mean by this exactly?

I was referring to the timing of the injections and the mixing process.  I watched RAB do this while on a trip to Montreal and Toronto, and the timing was such that he had to watch his schedule very closely.  At least this was my observation.

As for the mutation question, I was referring to the mutation profile of the HIV itself.  Just like some are not capable of using HAART because of mutation resistant bugs, I have been told that Fuzeon is not a universally useable drug.

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline allanq

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #9 on: April 10, 2007, 08:13:59 PM »
I injected Fuzeon for 3.5 years. The biggest problem with this drug is the injection site reactions, which, in my case, got worse over time. At the time I went off Fuzeon, my thighs, abdomen, chest, and upper arms were covered with painful welts, bruises, and nodules. However, this was my individual case; many people on Fuzeon do not have such severe problems.

As for the timing, I don't think Fuzeon requires any stricter scheduling than any other HIV drug. I tried to do the injections 12 hours apart, but there were many occasions that I was an hour or even two hours off. It didn't seem to affect the results.

Each Fuzeon kit (one month's supply) costs about $2,000 a month, or $24,000 a year. This makes it the most expensive HIV drug currently available. My insurance company made me go through hoops to get this drug. It was the only drug I took that required special authorization from my medical group. I had to get the authorization renewed every six months. There were always miscommunications between my medical group and the insurance that had me on edge as to whether I would get my next month's supply in time.

Allan

Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline jack

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #10 on: April 10, 2007, 08:20:34 PM »
my insurance had no problem with fuz and that was when it first came out.  The prep is really no big deal and only takes a few moments. Now the welts,those were muthafuckers,especially in the heat and humidity of houston.  Philly uses the new injector so maybe that reduces chance of bumps and welts.

Offline RAB

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #11 on: April 10, 2007, 08:35:58 PM »
Hi Philly

To start off, let me say I hate the term "salvage therapy".  I think it's one of those phrases which came into being before we had many of the treatment options that are currently available.  For me personally it has a negative connotation that isn't necessarily accurate today.

To answer your basic question about Fuzeon being considered in earlier treatment options vs when it is used now, I think there are a couple of reasons for that.  

1.  As Moffie stated, cost is probably the primary factor.  (Allang is right, the cost is about $2,000.00 per month which equal $24,000.00 annually.)  I don't currently use ADAP (just Medicare D), but when I did, my state's ADAP program would pay for Fuzeon, but only under certain conditions.

2.  The other reason I suspect Fuzeon isn't used earlier, is there are much simpler regimen choices available.

To the issue of mixing and administration, I agree with you completely.  Fuzeon is very easy to mix and the shots, once you get used to them, are pretty much routine.  Maybe Moffie's reference had more to do with the fact I'm an "anal" person by nature.  I would approach any treatment regimen with that same intensity, it's just part of my personality.  Having admitted that, Alang's comment is totally true.  There have been many times when I have not been able to take my meds on precise schedule.  I've been as much as 2 - 3 hours late.  Those occasions haven't resulted in any sort of regimen failure.  So, while my personal goal is to remain on schedule, and recognizing my "anal" personality, Fuzeon should not be judged based upon those personal qualities.

The one thing you talked about that I find the most interesting, was you reference to your high CD4 count.  It's something I've tried to bring up before because my doctor has mentioned (more than once) that it seems patients who use Fuzeon realize a stronger CD4 recovery.  I don't know of any quantifiable scientific study to back that up, I'm only mentioning the anecdotal comments of you and your labs and my doctor.  I know for me, Fuzeon, when combined with the only other drugs I had available (PIs), has proven to be a very good choice.

The best thing about Fuzeon is that other than the ISRs, I've had no side effects whatsoever.

Compared to what AZT did to me, I'd chose Fuzeon anytime.

But having said all that, I'll still opt for a change as soon as I can.  I've used the needles with the kit, I've used the Biojector for more than a year, and I've used the small gauge needles I buy seperately, the ISRs do get worse over time and I want to be rid of them if I can.



RAB

Who notes, Biojector still doesn't pass the spell check test.

Offline Miss Philicia

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #12 on: April 10, 2007, 08:36:49 PM »
I learned quickly where the best places were for the injections, as anyone would.  I do all of mine in my stomach area, as it's where the most fat is.  I get moderate site reactions only about 50% of the time, and they go away fairly quickly within 24-48 hours.  The bottom line though is anything of this sort pales in comparison to having to deal with diarrhea, gas bloating and all that crap.  Add to that the vastly superlative lab numbers and vast improvement in energy and frankly in my mind it is a no-brainer.

At one point I was considering going off of fuzeon when the new stuff comes out this summer, but I am no longer considering this.  If I see people equaling the numbers I have on the new meds I will consider switching but not until then.

As far as Moffie's comments about seeing RAB during travel, I've personally travelled twice overseas on this regimen, and several times domestically.  Yes, it adds too my luggage and I can't throw a syringe in my pocket like I can a handful of pills, but really since it's a 12-hour dosage (and there's a decent 2 hour window or so tolerance to this) I've not had any problems in terms of coordination.  I'd say my travel frequency and experience with this more than stand up for showing that it is not a big issue.

The bottom line is that there are trade offs in any HAART regimen, and my point is overall that I think physicians are too timid in using fuzeon.  If it didn't provide wildly great results I'd say the timidity was relevant, but alas this is not the case certainly with the synergy of fuzeon with prezista.
"Iíve slept with enough men to know that Iím not gay"

Offline allanq

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #13 on: April 10, 2007, 09:11:37 PM »

To start off, let me say I hate the term "salvage therapy".

I also hate that term. It makes me think of a junkyard. I may be 59, but I don't feel like a rusty old relic yet.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline ademas

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #14 on: April 10, 2007, 10:44:33 PM »

And for others reading here, would you advocate fuzeon being used more in treatment even if it's an injectable, if you were relatively assured such promising lab numbers?  Or is it the pay off not worth it to you because of the method of delivery?  Also consider if you are willing to have the trade of an injectable for the relative lessening in any GI issues?


It's only been mentioned in passing by my doc, and always in the context of "salvage therapy". 

The injectable factor doesn't bother me too much.  I injected testosterone for years, and now inject Humira (for arthritis) into my abdomen.  The possibility of ISRs might give me pause, only because I get those now, and I'm still trying to wrap my head around a new ISR every 12 hours (as opposed to biweekly).

My CD4's were 616 and 26% in Dec. (or something like that, and I'm overdue...)  VL's been undetectable since Crixivan clinical trials (with the exception of a couple of spikes to 75).  I'm currently on Sustiva and Combivir, and it's doing the job with minimal sides, so I probably wouldn't consider it at this point.


Questions:
Is it always used in conjunction with a PI? 
Anyone experienced increased lipodystrophy?

Interesting topic.

Offline Miss Philicia

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #15 on: April 10, 2007, 11:02:57 PM »
Well, I think for the longest time fuzeon was "salvage" for people with resistance to PI's, but with Prezista which, though a PI, is a PI specifically for those with resistance to all the other PI's (Prezista has a different structure than other protease inhibitors and is active against strains of the virus resistant to other protease inhibitors that are currently available) there seems to be some sort of synergy with the two meds that are giving these results (that was the specific trial I was on)

Quote
Tests have shown that Prezista and Trimeris' Fuzeon AIDS treatment work better in combination than when taken individually.

In anticipation of Prezista, physicians have delayed prescribing Fuzeon to patients who have lived with the disease for a long time. The idea is to deliver the strongest one-two punch possible before the virus is able to adapt.
...
In combination, the two drugs reduced the virus to undetectable levels in nearly two-thirds of the patients tested.

source

(sorry that's just a news article and not the actual test findings... I'm being lazy with my google skills tonight)

As far as your question regarding lipo, it was my doctors opinion that there would not be, or at least a greatly reduced risk, of this occurring on this regimen. 
"Iíve slept with enough men to know that Iím not gay"

Offline aztecan

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #16 on: April 11, 2007, 12:36:39 AM »
I agree, the term "salvage therapy" sounds bad.

But the main reason many are not jumping on the Fuzeon bandwagon is cost, as Tim mentioned. It isn't available from ADAP here unless it is preauthorized and then only if the doctor prescribing it makes a valid case no other option is available.

This happens with many drugs. Prezista was just approved by the state within the past year.

For people accessing health care here through the Indian Health Service, Atripla isn't available. The individual drugs are, but not the Atripla. The reason is cost. (I got this from the doctor who oversees all HIV and infection disease care for the IHS on the Navajo Nation.

Sorry, didn't mean to hijack the thread. But the cost of Fuzeon is so prohibitive that someone would literally have to have no other choice before they will prescribe it here.

Just my 2Ę worth.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline penguin

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #17 on: April 11, 2007, 05:29:18 AM »
cost, as people already pointed out. Simplicity, yes. That, and i think the other biggie is clinician confidence - i was reading something about this a while ago, (here)how many less experienced dr's won't prescribe it, because they think their patients won't cope with it/ don't understand how effective it can be.

I think we've seen with other patient groups that injectible meds can be a success - whether it's diabetics with insulin, or kids with growth hormone shots - provided adequate support & information is given.

biggest drawback with it for me, is the isr's. i simply dont have the subcutaneous tissue there to make injecting anything less than a painful experience. i keep going with it because it has so few side effects or toxicity issues - and it is a powerful drug when combined with other active meds.

resistance to it, yes, it does happen - but it is active against >80 hiv strains, and >40 which are resistant to all 3 main classes. primary mutations mainly show up in the HR1 & HR2 regions of the gp41 gene.

matt or someone would need to help me out with this..but i think it was one of the Toro studies, showed that people with V38A, E mutation had higher cd4 gains with T-20..& 2(?) other mutations led to reduced cd4 response...? i may be talking nonsense though  :)

kate

Offline newt

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #18 on: April 11, 2007, 08:19:09 AM »
What kate said about V38

IMPACT OF ENFUVIRTIDE RESISTANCE GENOTYPE ON CD4 INCREASES IN PATIENTS WITH ONGOING VIRAL REPLICATION WHILE RECEIVING ENFUVIRTIDE (T Melby et al, Antivir. Ther. 2006, 11:S43, or abstract no. 35 from the 15th Resistance Workshop, Sitges).

Covered in a NATAP report (itsy bitsy text as usual, them NATAP uberactivists must have some kind of raptor vision) Resistance to Enfuvirtide, Vicriviroc, and TMC125.

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

Offline Moffie65

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #19 on: April 11, 2007, 09:30:35 AM »
I wanted to tell all of you guys in this discussion just how touching and important this has been for me.  I am still in the decision mode and still have the option to do this, but am vascilating back and forth on the issue.  It seems there is no garantee that it would help me, and with my current CD4 of 609, I am responding very well to the AZT, half dose.  Now I just have to decide whether or not I can sustain a good outlook with the GI problems, and hold out for the middle of the year, or go ahead and ask the doctor to start treatment with Fuzeon. 

You guys have really helped me to focus on what is real and what is immagined, and I really want to thank you all for that.

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline whizzer

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #20 on: April 11, 2007, 08:25:48 PM »
-- obviously nobody is going to put someone newly diagnosed on an injectable before just trying out.  If I had meant "first drug" I'd not have relegated this topic to the new "Long Term Survivors" forum.


Well, never say "nobody"

I am using Fuzeon as part of my first drug regimen.  I'm doing it as part of a clinical study involving the latent pool of resting CD4s.    I don't pay for the drug, or any of the drugs, for that matter, so cost is not an issue.

I don't find mixing/storing/injecting the drug to be much of a problem.  I have ISRs at almost every site, not bad ones usually, and they generally are gone within a couple of days.  I primarily inject in my belly and chest.  I started off using a Biojector but the damn thing HURTS.  I hated it.  Other users on this site clued me in on using small gauge diabetic syringes and I have been content with the injections ever since.  My Biojector sits in the cabinet collecting dust.

As far as results.  It took awhile for me to become undetectable - seven months - but that, we suspect, is due to other underlying conditions which affect me.  My CD4s shot up like a rocket right away.  From 260 to 900 over the course of two months.  They bobbled around a bit, and have since settled in the 1100-1200 range.  My percent went from 13 to 25 over the first three months.  I'd say the drug is pretty damn effective.  Oh, my background ARTs are Truvada and Norvir-boosted Invirase.

A Fuzeon-containing regimen is a bit onerous for all but the most motivated individuals to adapt to successfully.  That, and the susceptibility to mutations if the dosing schedule is not followed properly is probably why it isn't used more than it is - along with the enormous cost of the drug.

Will Fuzeon see broader use?  I doubt it.  Not unless they can come up with a once or twice a week version of the drug.  Or unless this study I'm in shows a lot of promise.


Offline Miss Philicia

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #21 on: April 11, 2007, 08:39:28 PM »
Well, thanks for that whizzer.  That is encouraging, and your results are superlative.  It will be interesting to see, but I met with someone just Monday who does consulting as a visiting nurse on injections for Roche here in Pennsylvania I'm quite sure they think there is no possible way to change the dosage ever on this drug because of the size of the protein molecule involved, or something like that.

Sorry that the Biojector did not work for you, but yes I know of people who use the diabetic syringes instead of the more customary ones.
"Iíve slept with enough men to know that Iím not gay"

Offline whizzer

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #22 on: April 11, 2007, 09:03:57 PM »
No, Fuzeon itself will never be anyhing but what it is, but Trimeris is working on adapting the molecule so that is has a much longer half-life, which might yield a fusion inhibitor with a once or twice weekly dosing schedule. 

Offline Miss Philicia

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #23 on: April 11, 2007, 09:49:59 PM »
Interesting.
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Offline jjmcm

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #24 on: April 11, 2007, 10:45:13 PM »
It does not look like Trimeris will be working with Roche (or perhaps anyone) on a new fusion inhibitor.

http://www.hivandhepatitis.com/recent/2007/032307_e.html

Offline bimazek

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #25 on: April 12, 2007, 11:22:16 PM »

there was an article in late 2006 in one of the glossy mags, poz i think or the other one, by a dr.  he writes monthly column

he said that he sees in near future a first regiment with all new classes of drugs

like fuzion or integrase inhib.

a first line combo would not contain any nuke, non nuke, or even protease

i think the dr. are afraid to try this

but penicellin was much better than sulfa drugs before them

but took decades for all dr. to get on board with new penicellin


Offline SASA39

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #26 on: April 13, 2007, 02:29:56 PM »
just to add web site and I`m gone although I know that this is not my thread
http://www.salvagetherapies.org/
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline Ody

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #27 on: April 13, 2007, 05:12:38 PM »
I hate the term 'salvage', like was stated earlier, I don't feel like it's time for me to be in the yard.

I have been on Fuzeon for 1 1/2 years, with Truvada, Aptivus, and Norvir. My v/l, prior to Fuzeon had never dropped below 500 and my T-cells never making it much past 10 for near 15 years. It took 6 months for my vl to get to under 50, and my last T-cell count 2 months ago is up to 197.

Due to GI issues, I was forced to stop taking the PI's and went out on a limb with only Fuzeon and Truvada. The only 2 drugs I am not resistant to, aside from Aptivus.

ADAPT never gave me a problem paying for it, well one time but it was a "computer error" ::), now med D (Rx America Advantage Star) gave me a few issues at on set of the program.

When starting on Fuzeon I was unable to inject myself due to damage to my spinal cord, causing uncontrollable tremors. caused by internal shingles. But at that time I couldn't even feed myself, I did wear my food well though, at least I'm told. My ex, now roomie, gave and gives them to me a majority of the time. Due to my strive for independence I have managed to work off all the fat build up on my arms, each round now I am only able to get 1 injection in one arm, 2 in the other. The majority of the time the injections are nothing, other times errrrrrr.

We, the doctor and I, are working to get the Biojector asap. ADAPT aware and prepared to assist. I am excited and shared shitless, but I WILL BE the FIRST to shot myself with the gun...

Personally, my attitude is, cost aside for the moment, the individual should be able to decide what course of treatment they take, with the doctor taking the place of the adviser. The minute it is determined that the 'usual' therapy is only 'managing' the virus but not knocking it on it's ass, Fuzeon NOW, stop destroying the GI tract.

Funding, if we can 'afford' spending trillions on a war, spend it on the people to get them healthy and back on the work force/remain on the work force to pay for all the mess.
Take a deep breath and forgive yourself, no since in you making it harder, that's someone else's job and you know they are more qualified, just ask um!

Offline Miss Philicia

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #28 on: April 13, 2007, 05:28:56 PM »
... and of course if Fuzeon was used more the cost would come down
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Offline whizzer

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #29 on: April 13, 2007, 08:00:59 PM »
... and of course if Fuzeon was used more the cost would come down

Well, I dunno about that.  Norvir use went up, but Abbott raised the price 400%.

Offline Miss Philicia

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #30 on: April 13, 2007, 08:30:13 PM »
Well, I dunno about that.  Norvir use went up, but Abbott raised the price 400%.

True
"Iíve slept with enough men to know that Iím not gay"

Offline gerry

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #31 on: April 14, 2007, 05:40:57 AM »
This was written by Dr. Gallant in 2003 when Fuzeon first came out and they were very wise words even back then when the next generation PIs were still years away from becoming available...

The Optimal Use ot Enfuvirtide

By Joel E. Gallant, M.D., M.P.H.

...Unfortunately, ENF is already being labeled as a ďsalvage drug.Ē Before we consign it to a position likely to minimize its utility, we should remember the words of Joep Lange, who said, ďSalvage therapy only works when itís not really salvage therapy.Ē No effective agent should be relegated to a position where itís least likely to work. Cost, inconvenience, and toxicity may tempt many clinicians and patients to defer the use of ENF until there are no remaining options, but such a strategy will ensure that the response to this valuable drug will be blunted and brief. The results of the TORO trials clearly indicated that ENF worked best, and longest, when it was combined with other effective drugs. This means that the optimal positioning for ENF will be somewhat earlier: not in an initial regimen and probably not in second-line therapy; but not for ďdeep salvageĒ either. Ideally, ENF would be combined either with an NNRTI in a previously NNRTI-naÔve patient, or with a boosted protease inhibitor (PI) or a ďdouble-boostedĒ PI (e.g., LPV/r plus another PI) in a patient with some PI experience but without extensive resistance. Nucleoside/nucleotide analogs would also be included, based on susceptibility.

Of course, our clinics are full of patients who are already beyond that point: patients who already have extensive 3-class resistance, making it difficult or impossible to come up with an effective background regimen with which to use ENF. For such patients, the decision to use this drug needs to be made with great caution. A patient with a high viral load and a CD4 count of 10 cells/mm3 despite antiretroviral therapy may derive substantial clinical benefit from an ENF-containing regimen, even if the likelihood of durable virologic suppression is slim. However, a patient with extensive drug resistance and a CD4 count of 200 cells/mm3 might be able to remain relatively stable on a regimen consisting of reverse transcriptase inhibitors and/or protease inhibitors, allowing ENF to be reserved until it can be combined with other agents currently in development. Some promising ďpipelineĒ drugs that may be beneficial in such patients include the second generation NNRTIs, capravirine and TMC-125, or the second generation PIs, tipranavir or TMC-114.




Now that the next generation PIs (Aptivus and Prezista) are approved and other newer drugs are available through expanded access, there is actually a little less pressure as to the "correct" timing of using Fuzeon, since these newer drugs can be combined with it.  When Fuzeon first came out, the dilemma was there were many people who were already triple-class resistant; therefore, there was no other active drug to combine with Fuzeon and even if it was added, its usefulness was very limited.

Offline lforsyth

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #32 on: December 27, 2010, 08:36:50 PM »
I have to say that I speed through this thread after your first message. You are undetectable and have a normal count but you are unhappy?

I don't understand.  I tested positive in 1986. 1997 I was way past your HIV viral load and was just above 300 for immune system. I bounced back almost immediately, within a year.

I hope we can connect, share stories.

I know the world isn't out to get me.  I know that you are a nice guy that I'd like to get to know.

But I'm into some kink that may turn you off.  So Bye Bye.
« Last Edit: December 27, 2010, 08:40:29 PM by lforsyth »
Tested POZ in 1986, knew there was something wrong in 1985. 04/2010 CD4: 975 Viral Load undetectable. Prezista, Norvir, Truvada, Acyclovir, Plavix, Lisinopril, Metoprolol and a bedtime snack of Lipitor (YUM)

Offline Jeff G

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #33 on: December 27, 2010, 08:48:53 PM »
This thread is almost 4 years old and qualifies as a zombie thread , however some things are timeless such as Miss P and her pinchant for kink so if you make that connection I bet it wont be a problem , go for it !

Offline bear60

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Re: Should Fuzeon still be considered Salvage Therapy?
« Reply #34 on: December 28, 2010, 11:29:50 AM »
orly
Poz Bear Type in Philadelphia

 


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