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Author Topic: A thread for Fuzeon users--our emerging treatment options  (Read 4468 times)

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Offline RAB

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A thread for Fuzeon users--our emerging treatment options
« on: February 11, 2007, 06:51:16 PM »
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.)



« Last Edit: February 12, 2007, 10:30:37 PM by RAB »

Offline allanq

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Re: A thread for Fuzeon users
« Reply #1 on: February 11, 2007, 09:24:56 PM »
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
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 RAB

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Re: A thread for Fuzeon users
« Reply #2 on: February 12, 2007, 11:14:14 AM »
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

Offline jjmcm

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Re: A thread for Fuzeon users
« Reply #3 on: February 12, 2007, 11:59:18 AM »
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

Offline allanq

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Re: A thread for Fuzeon users
« Reply #4 on: February 12, 2007, 03:32:05 PM »
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
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 RAB

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Re: A thread for Fuzeon users
« Reply #5 on: February 12, 2007, 04:13:48 PM »
Wow Allan!   :)

Following up on some the questions JJ asked I'll ask this:

Is the only change you're making to switch out the Fuzeon?  Or are you changing other drugs also? 

(Actually I'm not sure what "other" drugs you're on so maybe it will not apply to me anyway.)

I'll be very interested to see how it goes.  Good luck Allan and please do keep us posted.

RAB 

Offline allanq

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Re: A thread for Fuzeon users
« Reply #6 on: February 12, 2007, 05:15:31 PM »
The only change I'm making in my drug regimen is swapping out the Fuzeon for the integrase inhibitor.

HIV drugs I'm now taking:
   Prezista/Norvir
   Sustiva
   Integrase inhibitor

I used to be on Viread also (as part of Truvada), but I had to stop it when my creatinine level started increasing to around 2.2. I also stopped Emtriva, because the main purpose of that drug was that it had some kind of synergy with Viread. After dropping those two drugs, it turns out my VL didn't suffer; I stayed undetectable. So the Truvada turned out to be just "excess baggage" in my regimen. Of course, there was no way of knowing this until I had to stop taking it. It makes me wonder how many of us have too many drugs in our regimens. It's possible that just two of the three drugs I'm taking would be enough, but it took me so many years to control this virus that I'm not willing to drop one of them in order to find out.

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 jjmcm

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Re: A thread for Fuzeon users
« Reply #7 on: February 12, 2007, 06:04:32 PM »
Congrats Allan on taking the leap!

It is interesting that you should mention dumping Truvada without a change in VL.  I discussed an article posted on Medscape at the end of 12/06 with my doctor about simplification of antiviral therapy after induction to less than a VL of 50.  In this particular case, they used Kaletra to discover that dumping the nukes had no effect for a year afterward.

They used a modified Roche Amplicor HIV-1 RNA assay that was capable of determining levels as low as 3 copies/ml.   My doctor told me that in his opinion, it was likely that the nukes were doing very little in patients on antiviral therapy for a long time.

That being said, it makes you wonder if a lot of us would do far better if the virus was undetectable, to eliminate them from the regimen.  I actually think with the number of side effects they produce it is likely we will see a movement in that direction in the future.

Please keep us advised on the response to your regimen change and post your results.

--JJ

 

Offline allanq

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Re: A thread for Fuzeon users
« Reply #8 on: February 12, 2007, 09:50:22 PM »
In November 2006, I submitted a question about replacing Fuzeon with the Merck integrase inhibitor to Dr. Gallant on the Johns Hopkins website. His response helped me decide to make the switch as soon as I could.

question:
Dr. Gallant,
I've been on Fuzeon three years, and the injection site reactions keep on getting worse. I've tried everything (massage, smaller needles, cold packs, hot packs, etc). I even had a nurse come to my home and watch me do the injections and give suggestions. Nothing has helped.

My other HIV meds are: Prezista/Norvir, Sustiva, and Emtriva. VL<50 and CD4=180.

I've asked my doctor about the Extended Access Program for the new Merck integrase inhibitor. The idea is to replace the Fuzeon with the new Merck drug. He thinks it would be a good thing, and if everything goes right, I'll be able to get into the EAP in another month or two.

Does replacing Fuzeon with the new Merck drug sound like a good idea to you?

Allan
 
answer:    
Allan,
I suspect that there will be a LOT of people replacing Fuzeon with the Merck integrase inhibitor, and it should be a safe thing to do for those with undetectable viral loads on Fuzeon. However, not everyone will be able to make this switch through the EAP, because it has specific inclusion critiera. Many will need to wait for approval next year.
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 RAB

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Re: A thread for Fuzeon users
« Reply #9 on: February 12, 2007, 10:29:54 PM »
Allan

Your additional input into this topic is exactly the kind of information I was hoping for because it's what I need.  The quality of the discussion (even though the participants seems to be limited to the 3 of us for the time being) is a testament to the potential power these forums have. 

Allan and JJ:

It seems to me that this discussion amongst those of us who have few treatment options, who are currently using Fuzeon with good results, and the reality that we are about to have additional choices, is too important.

With your understanding, I'm going to change the title of the thread.


RAB
« Last Edit: February 12, 2007, 10:47:49 PM by RAB »

Offline jjmcm

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Re: A thread for Fuzeon users--our emerging treatment options
« Reply #10 on: February 13, 2007, 09:35:00 AM »
Allan, I am glad you were able to get the Merck Integrase - 0518 EA so quickly.  I understand that most people tell me that it takes about a month for the paperwork to be completed and for them to obtain the medication.

It mentions in the EA requirements that you must not be suppressing VL in your current regimen.  For that reason, my doctor said that I would have to wait until after it was approved as long as I stay undetectable under 50.

If anyone would like to consider the Merck-0518 EA, here is a copy of the Earmrk form link: http://www.natap.org/2006/HIV/Earmark.pdf

I have also read that presently you are not allowed to enroll in both TMC-125 and 0518; however, they may change that requirement.

Let us know how things work out Allan.  Most folks I know that have started on Merck-0518 initially see a fairly rapid increase in CD4's.

--JJ

Offline allanq

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Re: A thread for Fuzeon users--our emerging treatment options
« Reply #11 on: February 13, 2007, 12:10:38 PM »
My doctor started the paperwork for the EAP around the end of November 2006, so it took a little over two months for me to actually get the drug. I took my first dose about an hour ago. It's about half the size of the Norvir pill.

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 RAB

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Re: A thread for Fuzeon users
« Reply #12 on: February 13, 2007, 07:12:55 PM »
JJ:

Just to bring this discussion full circle.

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'm not sure.  The way my doctor phrased it and cautioned that when I switch I might see some decline, I assumed he was saying that Fuzeon itself seemed to produce greater CD4 recovery and not viral suppression.  I'm still really curious if anyone else has heard this.

Quote
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?

Based upon what I know (which isn't much frankly) I'll probably just switch out the Fuzeon in the same way that Allan is doing.


Quote
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. 

I remember that discussion JJ and how identical our two situations were.  If we dropped the Fuzeon after achieving viral suppression, we'd have been left with what was a PI only regimen.  The reason I didn't want to drop the Fuzeon was that I didn't want to risk losing the PI class.  We're getting good results with our almost identical regimens and for all the problems with ISRs, that alone makes Fuzeon a powerful choice for members with resistance issues.  I agree with you 100% when you say it's nice to see those labs showing a VL of <50.  There was a time when many (most?) of us thought it was a goal we'd have to let go of.

RAB

Offline penguin

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Re: A thread for Fuzeon users--our emerging treatment options
« Reply #13 on: February 13, 2007, 07:41:05 PM »
..room for one more?  :)

I just restarted T-20 about 2 weeks ago - I’d been off it for a few months, due to an increasing problem with ISR’s, and rather a lack of sub-cu tissue to inject into.
Due to a number of different health problems, and a prolonged course of steroids, my immune system has basically crashed - last cd4 count was 23, 2%. The hope with the T-20 is that the miraculous molecule will work its magic on my tcells, and give them the same boost it did when I initially started it in 2004. (and  rab, yes, t-20 does seem to have a quite unique ability to boost tcells, regardless of how much effect it has on viral load)
I was dreading going back on it, because of how painful the whole process had been last time - but it seems that the short break has at least allowed some of the skin to heal a bit, & so far its been bearable.

I’m also on reduced dose FTC and tmc114 - reduced, because my liver and kidney function is shot (we dropped reyataz, which was only partially active anyway, about 2months ago for this reason)

Out of all the drugs I’ve been on, I have to say tmc114 is probably the easiest, in terms of side effects etc. It’s a pretty impressive drug, when you consider how much resistance it can still function in the presence of, and the minimal toxicities reported so far.
There’s some more about tmc114 in treatment experienced people, with /without t-20 here

We’ve talked about maraviroc too, mainly in regards to its CD4 boosting abilities, but have decided to revisit that one once we’ve got things a bit more settled with my renal & liver function. Again though, it looks so far like an impressive drug, with minimal toxicity, and CD4 gains regardless of viral suppression. Another thing which I (think I) read from one study was the difference in the effect of maraviroc resistance mutations vs. other resistance mutations; usually, when you have increasing amounts of virus with mutations, you get a rise in both viral load and IC50 (the amount of drug needed to inhibit 50% of the virus) But, as I understood it, with maraviroc, resistance mutations don’t change the IC50 ,they just reduce the percentage of max concentration…?

Allan, I’d also be really interested to hear how things go with the MK0518, as that’s another one I’m following with interest - probably even more so than the maraviroc - the results presented by Grinsztejn at the 13th CROI (summarised here ) looked very good.
Once they remove the clinical criteria (clinically stable, liver function etc) here in the uk, & assuming it proves a durable/safe drug, I would hope to be able to replace the t-20 with this at some point.

it is good to be reminded of new options becoming available  - and also, how far we’ve come over the years - T20 is (literally) a pain, but when I compare it to some of the drugs I started with -  crix, zerit, norvir etc… well, there just isn’t any comparison really.

Kate
« Last Edit: February 13, 2007, 07:42:56 PM by penguin »

Offline Miss Philicia

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Re: A thread for Fuzeon users--our emerging treatment options
« Reply #14 on: February 13, 2007, 09:08:22 PM »
OK... I *never* post my labs on this board for some reason, mostly because for someone on "salvage" therapy they're really high but here they are anyway:

I'm sorry that I stopped recording them after August's figures, but the numbers have stayed mostly the same though as of my last reading in December my % went over the 40 mark, VL has been undetectable for the past 7 months, and cd4's always are in the upper 700's/low 800's) !  I'll also state that my initial cd4's were already relatively high (low 500's) and had been for a couple of years (note:  I was diagnosed in '93 with sub-200 cd4's and throughout the 90's they never went above 350 or so), but my virus had been mutated to the ENTIRE class of PI's for a good five or six years, and as such my VL had NEVER EVER been undetectable.  Of course, the constant replication of my virus caused a lot of fatigue, I had two bad episodes of wasting, I had severe diarrhea reactions from all PI's (over and above what was "normal" for other patients... which probably caused the resistance as I'm very adherence conscience)

They wanted to put me on fuzeon  in the Spring of '05, but my doctor decided that since my cd4's were acceptable and my VL, while high, was stable, he would wait until he could combine it with Prezista and get me on a trial.  It was hard though to get me on the trial with my cd4 count, but towards the end he succeeded in doing so because basically the drug company was interested in my case and wants to market the combo to others like me.

Anyway, here's where I'm at -- and yes I think it's either the fuzeon or the prezista that does indeed cause a significant elevation in cd4's, or at least did for me.  I know it first glance all it looks like this has done for me is given me, finally, an undetectable VL but if you look at the trends and averages, and keep in mind my % is now 41.5% (the number I really assign the most importance to after VL) the effects are significant.  And while I had two ~700 cd4 counts pre-fuzeion those were very much outlier figures -- 450-550 was more the norm.  So in effect I've had STABLE cd4 increases of at least 45% over the base figure, and increases in my % figure of 5, as well as near instantaneous elimination of VL.

(not that my lab listing has the most recent numbers on the first line):

date       VL       cd4s         %'s

8/9/06   <50      882      38.6%
7/17/06   221      1037   38.4%
6/20/06   135      818      34.1%

(change to Fuzeon/TMC-114/Norvir/Truvada)

5/16/06   40,157   766      34.8%
4/19/06   37,008   576      33.9%
4/4/06   56,738   737      35.1%
1/4/06   21,389   573      35.8%
10/19/05   22,351   548      36.5%
7/26/05   25,534   514      36.7%

PS:  around mid-summer I have discussed going off fuzeon and on either that new Merck thing or the TMC-125 in place of the fuzeon.  Yes, I hate ISR's (I'm using the biojector) but am more than willing to tolerate it with these numbers.  I've even travelled substantially while on the treatment, both domestically and international.  Inconvenient, yet -- but doable.
« Last Edit: February 13, 2007, 09:20:41 PM by philly267 »
"Iíve slept with enough men to know that Iím not gay"

Offline allanq

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Re: A thread for Fuzeon users--our emerging treatment options
« Reply #15 on: February 13, 2007, 11:12:21 PM »
philly267,

Are you resistant to Sustiva or Viramune?  If you aren't, I wonder if you could just take Sustiva rather than Fuzeon. That way you wouldn't have to wait for the expanded access program for TMC-125 (which, like Sustiva, is an NNRTI). I have read in a number of places that Sustiva is one of the most powerful drugs in the anti-HIV arsenal. Assuming that you're not resistant to the Viread and Emtriva in Truvada, a combination of Prezista, Truvada, and Sustiva could be a very effective combination.

Another thought -- Although I was on Fuzeon for three years and three months, it was during the last six or seven months that the ISRs became particularly serious and painful. I don't know why that it is, but I've heard the same from others--that the ISRs seem to get worse over time. It sounds like you're coping pretty well with the Fuzeon injections. Since you've been on Fuzeon for "only" nine months, maybe you can stay with it until the Merck integrase inhibitor is approved in August or September.

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 Rusty

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Re: A thread for Fuzeon users--our emerging treatment options
« Reply #16 on: February 14, 2007, 01:32:49 PM »
Hi everyone interesting reading other peoples experiances. I would like to add mine to the list. I have been positive for 22 years.
My viral load was always high and my best ever CD4 Count was 300 and that was while taking Kaletra, Abacavir, Sustiva which was very manageable for me at the time and it lasted 4 years until i went down with a rare type of TB my CD4 dropped to 40.
I then switched to T20, Tipranavir, Ritonavir,Combivir,Viread which I took for 19 months.
In just one month of using this combo my Viral load became undetectable for the first time ever and my CD4's started to rise gradually the highest over the duration of this combo was 160.
I must add I was also on a 12 month regime of anti biotics for the TB which was an absolute nightmare to take alongside my usual meds and this did seem to affect my lab results as they were up and down from month to month, but my viral load stayed undetectable.
The interesting thing was that even though my CD4s were at 50 my percentage was always between 18 % and 24 % which was pretty good.

December last year I switched to TMC 114 and TMC 125  to replace the Tipranavir and the Fuzeon as the ISRs got to much and the Tipranavir was a risk to me as I am a haemophiliac and can cause intercranial brain bleeds which I didnt want to risk having. My last labs were done on the 5th week of the new regime and my viral load was again undetectable and my CD4 count was at 40 and at 16%. I am looking at adding the intergrase inhibitor when it is available to try and boost my CD4's back up.

Offline Miss Philicia

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Re: A thread for Fuzeon users--our emerging treatment options
« Reply #17 on: February 14, 2007, 04:51:14 PM »
philly267,

Are you resistant to Sustiva or Viramune?  If you aren't, I wonder if you could just take Sustiva rather than Fuzeon.

I had a bad reaction to Sustiva when they tried putting me on it back about '99(can't recall what the reaction was off hand but they had to take me off, and no it wasn't anything to do with the dreams... maybe a rash or something).

I've been through three HIV specialists since resistance assay testing was available so I think they know what they are doing.  They've all come to the same conclusions.  And yes, the plan as discussed is to halt fuzeon in June or July when either TMC-125 or the Merck is ready.  No biggie... that will only be one year of injecting and I'll still have it in reserve to go back to if I ever need to.
"Iíve slept with enough men to know that Iím not gay"

Offline Christine

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Re: A thread for Fuzeon users--our emerging treatment options
« Reply #18 on: February 16, 2007, 05:09:12 PM »
I started on T-20 in 2002 (I think- I am bad at dates, and don't have it written down). I do agree with Rab, other than the ISR's I did not have other side effects. It was a challenge to get into the routine of doing the shots. But once the routine was set, it was not hard.

I have never been undetectable on anything, including T-20. It was low, but never undetectable. My VL started to climb, and the doctor suggested the GS-9137 study drug. Which is an integrase inhibitor. So far, I don't the side effects I have had are from the study drug. Belly issues from the Norvir is my guess.

I had to switch to a new HAART regime according to the study, so the T-20 was stopped. My VL dropped for three months, but it has again started to climb. Last week the background HAART was changed, keeping the study drug.

At this point, (if the VL is not dropping )the next step that has been discussed is stopping the study drug, changing the HAART to include Fuzeon and TMC-125.

I hope I answered your questions. Fuzeon worked pretty well for me, and outside of the ISR's I did not have any side effects.

I would rather not have to start injecting again, but fully expect it to happen.

I injected in my stomach, rear end, love handle area, and my thighs. Although, the thigh ISR's hurt like a bitch. I can't do my arms, or chest area, not enough fat.

Christine
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 LES Jake

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Re: A thread for Fuzeon users--our emerging treatment options
« Reply #19 on: March 11, 2007, 07:01:30 PM »
Hello everyone:

I recently started on Merck's Integrase inhibitor and was able  to stop using Fuzeon. I was on Fuzeon for 1 month and 1 week. My heart goes out to people using this drug. I found it to be a lot to take on. It's been about 2 weeks and I still have hard areas where I injected that stuff. On the up side, when I got my blood work back my viral load went from 3000 to 300. My tcells did not go up... yet.

I haven't had to pay attention to my hiv for years, about 11 to be exact and with the help of this web site I was able to make good decisions as to what  drugs to ask for and what  side  effects to look out for or what to do about them. So I have gratitude for aidsmeds.com

Wishing you all well.
J :-*

 


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