fuzeon and isentress

[motherinneed]

Are these drugs only for those who are experiencing resistance to oral medications? It seems that isentress actually blocks the HIV virus from infecting more cells? So would that not be a good thing for HIV positive folks to be taking?
I read things on the internet about both drugs but would appreciate any input from you guys. Thanks.

[Miss Philicia]

Dear motherinneed:

I have been on both medications.  Fuzeon for 1.5 years and now switched to Isentress 1.5 months ago.  At present both medications (Fuzeon is injected twice daily, Isentress is a pill taken twice daily) are only approved for patients with resistance to other HIV medications, as is Prezista which was approved in 2006.

As far as why this is the situation, one I'm sure one reason is cost (Fuzeon is the most expensive at ~$30,000/yr -- I believe Isentress is more like $10,000 currently) and because these medications were originally designed for and studied on treatment resistant patients, as they were the most in need of new medications for obvious reasons.  I know that there are on-going tests for the efficacy of Prezista as a first line treatment and the results have been quite good, so I would assume that they either are or will be doing the same for Isentress.  These studies take time and the assumption is that there is no rush as there are enough other medications that are reasonably tolerated for patients with no resistance issues, and which achieve viral suppression.

[Miss Philicia]

I just noticed that in the treatment news section of aidsmeds.com that Tibotec has requested first line therapy approval for Prezista.  It took them 1.5 years after the first FDA approval for the drug to reach this, so that might give you an idea of the time it will take if they decide to go this route for Isentress.  Of course, there will be months to go before this actually happens so it may very well be a 2 year period we're talking about.

[SteveA]

My doctor just switched me from Fuseon to Isentress yesterday. Anyone have any stories of side effects that I need to watch for with this switch? The only side effects I had from the Fuseon were injection site reactions. I hope this new pill is as lenient if not more so on my system.

[freestate guy]

I have been on Isentress for close to a month now with absolutely no side effects so far. Haven't had any labs drawn yet, though. My ID doc thinks this may become a blockbuster drug. Lets hope!

[loyd66]

 I started Fuzeon in October of 2005 and was on it for about a year when I had such severe ISRs that I had to stop. About a year after that I had a geno/phenotype done and I was still susceptible<sp> to Fuzeon and my doctor said it was because I had stopped it suddenly instead of missing doses which would have caused resistance. Also I am virtually resistant to almost all of the HIV meds, which is why I was started on the Fuzeon and later Prezista was added along with the Truvada and Norvir to boost.

 My problem now is that I am now experiencing ISR burnout. On top of that I have had severe itching for almost 3 years. Part of my itching is from a skin condition which only affect my exposed arm areas. Not sure what the exact name of the condition is but my dermatologist said it was caused by nerve ending damage from long term exposure to the sun.

 I also think the itching is more profound because of one or more of the medications I am on as the itching problem started right about the same time I started my regimen of Fuzeon, Truvada, Prezista, and Norvir. I believe one or two of the meds I am on has some sulfa in it which could be why I have the severe itching problem. Several years ago it was determined that I was allergic to sulfa containing drugs and I can no longer take Bartram so they put me on Dapsone.

 My labs are very good as for the first time ever my viral load dropped to 400. Before starting Fuzeon my viral load was 750,000 and on previous drug regimes my viral load only dropped to about 25,000. When starting Fuzeon after 6 weeks my viral load dropped from 750,000 to about 60,000 then in another 4 to 6 weeks it was down to 15,000 then 900 and now 400.

 The problem I am having is I am staring to miss more than 1 or 2 single doses of Fuzeon per week because of the ISRs are so bad that I can find nowhere to inject and my itching is so unstable that it is affecting my sleep. My Dermatologist has had me on so many different things that at minimum mildly work. I am taking Hydroxyzine 10mg now and that seems to help a little and helps me to get a good nights sleep but I still have times my itching wakes me up and I have red marks all over my arms because eventhough you are not supposed to scratch it is impossible to not do it, though I have gotten better when rubbing instead of scratching.


 What I am wondering is if Isentress could be a possible replacement for the Fuzeon and if the Truvada could be dropped and I still get the benefits with Prezista, Isentress and Norvir.

 I have labs drawn today and see my doctor on February 15th. I hope to be finally off the Fuzeon because I am so tired of the ISRs and feel that possibly the Fuzeon could be contributing to the severe itching that I have been dealing with for the last 2 or 3 years.

 Any advice or input on any of these would be appreciated.

Thanks,

Loyd
 

[Miss Philicia]

Loyd, yes -- I did just what you suggested over 2 months ago when Isentress was approved.  Dropped the Fuzeon and substituted it with Isentress, otherwise I am on all of the exact same other things you are (Prezista w/Norvir booster and Truvada.  I don't think your doctor will suggest dropping Truvada.  Why are you wanting to drop this one specifically -- either I'm missing it in your post or you don't say.

As far as the sulfa issue, Prezista is the culprit there I believe.  I had a sulfa reaction way back in 1994 from Bactrim, but I've not had any issue with Prezista and I've been on it now for 1.5 years.

Also, if you had such bad ISR's why in the world did your doctor not get you onto the drug trials for Isentress, then you could have solved this some time ago?  It's very important when you have such extreme resistance issues to self-advocate if your doctor is not doing what needs to be done, or at least ask questions and apply pressure.  At this point you don't have room for fuck ups, and becoming resistant to something as valuable and potent as Fuzeon (if you'd gone off of it earlier in the accepted manner you would not be resistant, and hence still have that option in later years to return to it if you really, really needed to -- obviously this med works where others do/did not for you, as it seems to for everyone that goes on it).

So, in short, I'd strongly advise discussing the Isentress option with your doctor ASAP.  I have had ZERO side effects from Isentress, and my first lab results were very, very pleasing.

There's also another new med for resistant patients that was just FDA approved last week.  Read this thread:

http://forums.poz.com/index.php?topic=18477.0

[allanq]

Loyd,

I agree with Philly on this. I don't know know why your doctor hasn't suggested switching to Isentress. I was on Fuzeon for more than 3 years before I switched to Isentress. Toward the end, I was practically in tears every time I had to inject. Usually, the injections themselves weren't as painful as the reactions that would occur hours later. After I switched to Isentress, I was in a state of euphoria for a few weeks. I just couldn't believe that two little pills a day could take the place of those painful injections. But I have continued to be undetectable since the switch.

A new drug, Intelence, was just approved that also might be of value to you. It is an NNRTI, but it seems to work even if you're resistant to other NNRTI's like Sustiva. It's worth bringing this up with your doctor.

I don't know what can be causing the itching. Some years ago, I went through many months of intense itching. The itching finally went away, but I have no clue as to why. How are your liver function tests? I've read that people with liver problems sometimes experience intense itching. Here's a link to an article on it: Itching in Liver Disease

I often see posts in the forums from people asking advice on all sorts of issues that their doctors should be taking more notice of. For example, people suffering from neuropathy who are on Zerit or who are experiencing lipoatrophy but are still taking AZT. I wonder why their doctors are keeping them on regimens that are causing such damaging side effects. This is one reason why it is so important for patients to take a very active role in their own treatment. Too many doctors just look at the numbers and not the whole person. I'm digressing here, but I'm convinced that being a strong advocate for my own health has been one of the reasons I've been able to survive this virus for 22 years. (Luck has also been an important factor.)

Good luck. I hope you'll be able to get off the Fuzeon very soon.

Allan

[loyd66]

Thanks for the responses guys. Actually I have been talking with my doctor and my doctor has sugested Isentress as a possibility. He just wanted to wait until the set of labs I had today to see where I am at. I think I have missed few enough doses of Fuzeon to still maintain my current low viral load of 400. When I was on Fuzeon the first time back in 2005 and 2006 my ISRs were a lot worse than they are now because of using the needles that come with the fuzeon kit i had also switched to the fuzeon injector device that used no needles but ended up going back to the needles because the ISR were very bad with the injector and there were fewer locations to use it.

 When I got back on the Fuzeon last year I was prscribed insulin sized needles which helped a great deal and the ISRs were far less problematic. It is just that I am burnt out of having the sore lumps afterwards and some of them have been with me for at least a month.

 The only reason I mentioned dropping Truvada is that I thought one of the 2 drugs in Turvada was sulfa based and could be contributing to the intense itching.

 After looking at the drug information I see that the Prezista could be the culprit though I believe the Fuzeon could also be what is causing the itching.

 My itching has its roots in a dermatological fashion coming from damage from years of exposure to the sun which my dermatologists says has caused damaged nerve endings on my arms.

 I am hoping that after dropping the Fuzeon and adding Isentress that the itching will subside or at least be controllable with the hydroxyzine that I am taking nightly.

 I believe my doctor does have my best interest at heart and has not switched anything yet because of being out of options.

 I see him on February 8th now instead of the 15th and hopefully then i can finally be done with the Fuzeon and have some closet space back from all the boxes of supplies that I have with Fuzeon.

 I will ask him about Intelence since I am resistant to everything in the class with Sustiva and if he thinks I should give that a try.  I think just being on the Isentress, Truvada, Prezista and Norvir is good and I haven't had hardly any other side effects from any of them except for a flushed feeling which I think may be from the Truvada but at least it is tolerable.

 i sure can't complain much because of all the other side effects i have had from the older meds years ago.

Thank You,

Loyd
 

[ubotts]

Sigh..after reading all these posts..well I don't know what to think..

I had a liver biopsy done 2 days ago.

I will learn tomorrow what genotype I have, then from there, we will see what I need to
do..

I hope I don't have to inject myself...

I was a needle user way back in the 70's...and I don't want to deal with needles again
in any form..........But If they say I have to, then I will..

But right now doing alot of research on my own about this whole situation...
Like someone said before, You have to be your own health advocate...

We are all different, even though we may have the same diseases...
What works for one person, may not work for another..

Glad I read this thread...Say a group prayer for  me tomorrow, when I get my tests
back....I sure could use some prayers...