Fuzeon thread in Side Effects forum

[allanq]

RAB started an interesting thread on Fuzeon in the Side Effects forum. It began with a discussion of the injection site reactions that nearly everyone on Fuzeon gets, but the thread has expanded into other Fuzeon-related matters, especially possible alternatives to Fuzeon.

I just started the Merck's expanded access program for their new integrase inhibitor and have discontinued Fuzeon after three years and three months. (Took my first Merck pill today.) I'll have my next lab work done in another month, so I'm keeping my fingers crossed that this change will work out.

           Fuzeon Thread

Allan

[Ann]

Hi Allan,

Good luck with the new integrase inhibitor - I'll be interested in how it goes for you. It must be a relief to get off the Fuzeon and I hope it goes very well for you indeed. Fingers and toes crossed!

Hopeful hugs,
Ann
xxx

[allanq]

Thanks Ann.

I should have mentioned that the Merck pill is a very attractive shade of mauve that goes well with my salmon Prezista, golden Sustiva, pastel green Glyburide, pink Avandia, and pale yellow Zoloft. The Norvir is white, and therefore goes with everything.

Allan

[Ann]

Now that's what I like to hear Allan, color coordinated meds!

I like mauve.

Ann

[RAB]

Allan

I'm excited about this opportunity you're realizing for two reasons:

1.  For those of us on Fuzeon, who have a VL <50, the Integrase Inhibitor finally provides us with an option. 

2.  Even though your switching out the Fuzeon, you can still keep that weapon in your arsenal should you need to use it in the future (presumably--since you haven't developed resistance to it.)

Based upon what you mentioned Doctor G at Hopkins answered, what my own doctor is saying, and probably what your doctor is saying, I'm pretty confident you're going to see continued success in viral suppression.

Fuzeon works really well, as you know, but having the luxury to be rid of the ISRs is certainly something to celebrate.  You used the drug for over 3 years cause it was what you had to do, now you get to move on.

Keep us posted.  I suspect there are a lot of us who'll be following you as soon as the drug becomes available.

RAB

[Miss Philicia]

I'll be interested in your results, as I'll probably be switching to this by June or so unless I get really insistently bitchy with my doctor about the ISR's.  He said he'd switch me right now if I wanted him to, but I said I'd stick with the fuzeon for one year which is what June will make it for me.

[RAB]

I just started the Merck's expanded access program for their new integrase inhibitor and have discontinued Fuzeon after three years and three months. (Took my first Merck pill today.) I'll have my next lab work done in another month, so I'm keeping my fingers crossed that this change will work out.

       
Allan

Allan:

I was wondering how the med change is working out?  Any news?

RAB

[allanq]

RAB,

After one month on the new Merck integrase inhibitor my CD4s increased from 180 to 244. However, my viral load was 59. This is probably a "blip," at least that's what I'm hoping. I see my doctor next Monday, and I'll probably be getting another round of lab work done then. I had a few viral blips when I was on Fuzeon, so I'm not too concerned about the current one, especially since my CD4s are the highest that they've been in years. Sometimes I wonder if the lab is processing the blood properly. I've heard that improper handling of the blood sample can cause those viral load blips.

It took me a few weeks to get used to not having to do that twice-daily routine of injecting Fuzeon. I found that I was still getting anxious around 10 am and 10 pm, because those are the times that I used to do the injections. After seven weeks of the new drug, I'm over that, and just grateful that my body is free of welts and bruises from injection site reactions.

Allan

[RAB]

Hi Allan

Thanks for the update, I've been wondering how it was going. 

I can only imagine how nice it must be to be free of those welts and bruises.    

I agree the VL could very well be a blip, keep us posted. 

RAB

[jjmcm]

Hello Allan, what other meds are you on?  Did you change anything else besides the Fuzeon?

Have you been undetectable under 50 for the most of the time on Fuzeon?  How high were the blips?

I just had a screwed up VL test a month ago.  The VL under 400 came back clean, but the ultrasensitive came back at 446.  As my doctor said, one of those tests is wrong.  I am about to get another lab draw later this week and have found myself unusually anxious.

--JJ

[allanq]

JJ,

My current regimen is the Merck integrase inhibitor, Prezista, and Sustiva. Before the Merck drug, I was on Fuzeon, Prezista, and Sustiva.

I had about three "blips" over a period of about a period of about 18 months while on Fuzeon. The highest blip was around 300.

Allan

[jjmcm]

Allan, thanks for the reply.  Sustiva is still active for you?  I also see that you don't have a nuke in the combo.  Resistance, side effects? 

Good luck with the Integrase. 

--JJ

[allanq]

JJ,

Before starting on the Fuzeon regimen I had a genotype test done, and I was resistant to all the nukes. The genotype showed that I was fully susceptible to Sustiva. It showed some susceptibility to Viread, so I took that for about 2.5 years before I developed kidney problems and had to stop it. The blips happened both with and without the Viread in my regimen, so I don't think the Viread was doing anything for me.

Allan

[jjmcm]

I know exactly what you mean Allan.  While I still showed susceptibility to Viread when I started this last regimen, it was also part of my failing regimen on Reyataz.  Plus, as you say, I had decreased kidney function which worried my doctor.

I currently show no resistance in my profile to either Viramune or Sustiva.  However, I did take Viramune briefly (two months maybe)when it came out.  Since I was not completely undetectable at that time, I understand it is likely I am actually resistant to both of them.  Had you ever done Viramune before Sustiva?

I have considered trying TMC-125 with both Prezista and Raltegravir (Integrase). I don't know how many other people are doing all three of these meds currently.

Anyone out there doing all three?

--JJ

[allanq]

JJ,

I never took Viramune before Sustiva, but about five years before I started Sustiva, I did take another NNRTI--Rescriptor (aka delavirdine)--for a few months.

Although it didn't show up in my genotype, there was a possibility of the Rescriptor causing resistance to Sustiva. I was lucky that didn't happen.

This is always a problem with resistance tests. A drug taken years before can cause "background" resistance that is too low to show up in the resistance test.  Once you start the new drug, that old background resistance can reassert itself.

Combining TMC-125, Prezista, and Raltegravir sounds like it would be a very good option. From what I understand, TMC-125 can work even if you have some NNRTI resistance.

Good luck to you in your new regimen.

Allan

[Ann]

Hi Allan,

Nice CD4 increase!

About that blip - are you aware that viral load testing isn't recommended for diagnostic purposes because it has a high rate of false positives? That means the VL of a person who is actually hiv negative can come back with a number just like the one you got.

I think a high amount of what are considered blips are actually what can also be termed false positives. For those of us who ARE positive and use VL testing on a regular basis, we are BOUND to get the odd "false positive" result. So hang in there, chances are good that your VL result wasn't accurate.

Hope you're enjoying being welt free! 

Happy hugs,
Ann
xxx

[allanq]

Thanks Ann,

I appreciate your post. I didn't know that a viral load test can come back positive even if the person is HIV-negative. I think that information will help reduce my anxiety level when those blips do happen.

I also have to remember that "undetectable" doesn't mean non-existent. If the test has a lower limit of 50, you could have a viral load of 49, but it would be reported as undetectable.

Allan