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Author Topic: Fuzeon tender skin reaction  (Read 8712 times)

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Offline LES Jake

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Fuzeon tender skin reaction
« on: January 29, 2007, 01:21:11 PM »
So I started injecting Fuzeon last Thursday and two of the injection sites are red, swollen and are tender. How long does it last and is there anyway to combat this? As always, thanks so much.

Jake

Offline Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #1 on: January 29, 2007, 03:18:45 PM »
Are you using needles or the Biojector?  I'm using the Biojector, but I know both methods tend to produce site reactions which I will assume is what you're encountering.  When I first went on fuzeon in May they had me come back in perahps within 2 weeks just to look at site reactions and make sure there weren't any issues.  I assume some react worse than others.

There is seemingly little rhyme or reason to it either.  Some injections are fine with me and leave little behind, others make a nasty hard knot under the skin, others produce some yellow-ish discoloration.  I've found that each site reaction takes about 48 hours to begin fading and goes away in about 5 days.  Of course, this makes for some creativity in dispersing the injections around your body, in the appropriate areas for injection that your doctor should have gone over with yu.

So basically my answer is "no" -- there's not much of a way to combat it.  You're doing nothing wrong, everyone gets them.  Still, have your doctor inspect them after your first few visits -- my doctor always checks them over in case anything is stranger than expected but never has it been.

The trade off is that you will get excellent lab results from this medication -- I know I did.  What else are you taking with it, Jake?
"Iíve slept with enough men to know that Iím not gay"

Offline Tucsonwoody

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Re: Fuzeon tender skin reaction
« Reply #2 on: January 29, 2007, 04:01:59 PM »
Hey Jake - can't answer your question specifically for Fuzeon since I don't take it, but over the past few months I've had to do injections off and on of some other meds and my experience as far as site reaction vaired as well.  Sometimes nothing, sometimes like a bruise, sometimes red. 

Also, found this on the Fuzeon site, which has a  ton of good Q&A's: http://www.fuzeon.com/1300FuzeonFAQs.aspx#a301

"FUZEON causes reactions on the skin where it is injected. Reactions on the skin where FUZEON is injected include: itching, swelling, redness, pain or tenderness, hardened skin, and bumps. Almost all people get injection site reactions with FUZEON. Reactions are usually mild to moderate but occasionally may be severe. If the injection site reaction you are experiencing is severe, contact your healthcare provider immediately."

So it looks like it's not uncommon and only needs attention if it's severe.

I wish you good luck and hope your numbers just get better and better.

Kevin
And I wished for guidance, and I wished for peace
I could see the lightning; somewhere in the east
And I wished for affection, and I wished for calm
As I lay there - Nervous in the light of dawn

Offline Texgymrat

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Re: Fuzeon tender skin reaction
« Reply #3 on: January 29, 2007, 04:54:49 PM »
I have been doing fuzeon for over a year and it is a mystery as to what causes bad reactions.  I still get them frequently in varying degrees of severity.  I get them with the bioinjector as well as plain needle injections. It seems to be worse when I hit muscle with the shot.  So if you find some good fat areas to inject is seems to be less of an issue.  Also my doctor suggested a shorter needle--the type for diabetes injections--which is different from those that come with the kit.  That helped some but found drawing the solution into the needle more difficult.  Today I do the bioinjector in the morning and in the butt because it is faster and have more fat there.  I do the needle at night when less pressed for time and can seach more for fatty areas on my legs.  I had to stop doing the stomach due to site reactions there---there is some fat there unfortunately but for whatever reason it was repeatedly painful there.  But all these issues aside, it has been the best medication I have done as far as result...viral load was undetectable after two months and has been ever since.  Hope this helps.

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: Fuzeon tender skin reaction
« Reply #4 on: January 29, 2007, 05:31:21 PM »
Hello Jake,

You may also find the following links helpful to you. It was carried over from the old forums :


http://forums.poz.com/index.php?topic=428.0

http://forums.poz.com/index.php?topic=6308.0



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline jjmcm

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  • Posts: 78
Re: Fuzeon tender skin reaction
« Reply #5 on: January 30, 2007, 12:17:13 PM »
Hey Jake.

I have been a member of the Fuzeon club for about 15 months.  I love the results, I hate the ISR's. 

My ISR's have really gotten worse over time as my immune system has improved.  It does get to be routine though.

I have communicated with a number of individuals when they started Fuzeon therapy.  I recommend:

1.  Use smaller needles than those given in the Roche box.  I like the 31 G - 5/16" insulin needles.  They do take a little practice drawing the Fuzeon into the syringe, but it only takes about a minute or so.

2.  Try a variety of injection areas.  In particular, add the chest and butt to the mix.  Be careful about getting too far out on your sides and also monitor reactions in your thighs.  I cannot inject in my thighs, the reactions there hurt too bad when I wear jeans.

3.  After using the massager on the injection site, I smear the area with benadryl cream.  I don't know that it helps much, but to me it makes it feel a little better.

4.  If you react to a series of shots that cause you a great deal of discomfort, try taking a benadryl capsule plus an ibuprofen before you go to bed.  Recently while nursing a cough and fever that was going around, I took benadryl capsules nightly along with a 12 hour prescription NSAID called Indocin SR.  I could not believe how the combination reduced my ISR's by around 80%.  I even injected in spots I always have problems with and they barely reacted.  As soon as I stopped taking the Indocin, they started to come back.

Well, good luck.  Hopefully, this is a bridge for all of us back to a completely oral regimen.

--JJ
« Last Edit: January 30, 2007, 12:20:14 PM by jjmcm »

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #6 on: January 30, 2007, 10:02:47 PM »
Am I to understand that all people react this way to Fuzeon? These sores are tender. It sucks.

Offline Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #7 on: January 30, 2007, 10:08:01 PM »
Yes, dear.  Buckle up and deal!  :)

I got one about two days ago that was just the most massive lump I've yet gotten, though it's mostly gone away now.  For two days I felt like someone had punched me really hard in my stomach.  Didn't your doctor warn you at all about this?
"Iíve slept with enough men to know that Iím not gay"

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #8 on: January 31, 2007, 02:03:10 PM »
I'm almost positive I was told that not everyone got these reactions. I wasn't surprised when it happened, but thought there were courses of action to take to not get them. Right now, I'm trying not to insert the needle all the way in to see if that helps.

Offline Tucsonwoody

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Re: Fuzeon tender skin reaction
« Reply #9 on: January 31, 2007, 02:24:09 PM »
Fuzeon site says this:

"Remember that reactions at injection sites are a common side effect of taking FUZEON. Almost all people get injection site reactions with FUZEON. Reactions are usually mild to moderate, and very few people stopped taking FUZEON because of them. If you experience reactions at an injection site, it is important not to stop taking FUZEON until you have talked with your healthcare provider about any concerns you may have."

Also says this about how far to insert the needle.  Also talks about which size needle to use etc.

"If you are using the syringes provided in your FUZEON Convenience Kit, the needle should go ĺ of the way into your skin so that ľ of the needle is still visible. If the barrel is touching your skin, you have gone too far."

Again, I hope you're able to find a good solution to the side effects and that the Fuzeon works well for you.
And I wished for guidance, and I wished for peace
I could see the lightning; somewhere in the east
And I wished for affection, and I wished for calm
As I lay there - Nervous in the light of dawn

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Fuzeon tender skin reaction
« Reply #10 on: January 31, 2007, 02:36:06 PM »
The bottom line is if you think you're doing something wrong while injecting, insist on another injection demonstration with your doctor or office's nurse.  They DID give you this, didn't they?  This is not like popping pills, and it demands at least a half-hour session going over all of this.

I use a Biojector so I can't give more detailed analysis of using needles, but I do know they should have gone over the expectation of site reactions for it and what to look out for and what expectations to have.  If they didn't I'd question how good the doctor is.
"Iíve slept with enough men to know that Iím not gay"

Offline jjmcm

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  • Posts: 78
Re: Fuzeon tender skin reaction
« Reply #11 on: January 31, 2007, 04:14:27 PM »
Jake, yes everyone I know that takes Fuzeon gets the ISR's to some degree.  I have a close friend that doesn't really have much of a problem, but his CD4's are around 200.

Mine have gotten progressively worse.  The ISR's usually last a minimum of two days.  And, about twice a week I get a really bad one that lasts 4-5 days.  They are red, hot, swollen and hard.  (Yes, still talking about the ISR's!)

I find that they bother me the most when I turn while sleeping.

Oh, and BTW, you know most doctors don't do this crap, they just prescribe it.

Remember "manageable" means for them, not you.  "A little pressure" translates to a whole lot of discomfort.  "Uncomfortable" means prepare for the pain.   When they actually say "pain" you better ask for an Rx for narcotics. 

Good luck with your treatment.

--JJ

Offline Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #12 on: January 31, 2007, 04:19:07 PM »
CD4 count is irrelevant.  Mine are in the 700's and I get ISR's at least half the time.  It's simply what happens with injections of fuzeon.  Basically your injecting liquified protein into your body... what do you expect?  The molecules are somewhat large, and they come in contact with dense areas under your skin from time to time.  How long are these ISR's staying is my question?  Mine go away within 48 hrs... yes it's uncomfortable at times, but not so bad that I'm willing to give up my good results.

If they're hurting you during sleep maybe you should look into one of those body pillows to keep you from turning on them.  I considered one when I first began fuzeon but I no longer wake from ISR's.
"Iíve slept with enough men to know that Iím not gay"

Offline Christine

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Re: Fuzeon tender skin reaction
« Reply #13 on: January 31, 2007, 04:20:36 PM »
Hi,
I was on the t-20 study, and then on Fuzeon for a few years. I did have ISR, sometimes very small, sometimes really bad.

I switched to the smaller gauge needles which helped. I also rotated all the injections between my stomach, thighs, rear end. I could not do my arms because they are too thin.

What has sometimes helped me: rubbing the injection site for a few minutes afterwards, cold pack, a heating pad once the site flares up. Advil if the site was really sore. I have also laid under an infrared heating lamp which helped the really sore lumps.

I tired cortisone cream, but it did not work for me. I tried the massager, but that did not work either.

The beginning of using Fuzeon can be pretty hard. Hard to adjust to the mixing of the med, the injections, the ISR's, but after a while it does become habit. Hang in there.
Christine

Edited for typo. Also i forgot to add the when I self injected, I held the needle at an angle when going into the skin. Not straight up and down.
« Last Edit: January 31, 2007, 04:24:11 PM by 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 whizzer

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Re: Fuzeon tender skin reaction
« Reply #14 on: January 31, 2007, 08:24:36 PM »
The prescribing information for Fuzeon states that 98% of users in the original clinical trials exhibited some sort of ISR.

Mine, like those of others, show up with no rhyme or reason.  Sometimes the lump is small, sometimes large.  Sometimes they itch, sometimes they don't.  On rare occasions they are big dark bruises.

I used a Biojector for the first six months.  I hated the damn thing.  It hurt- sometimes a little hurt, sometimes very painful.  I switched to the 31ga 5/16 1cc diabetic syringes, which made the injections a whole lot easier for me to deal with.  The ISRs are about the same as the Biojector, but with less bruising, though a bit more lumpiness.  My lumps usually disappear within 48 hours, though some last as long as five days.

So alas, the ISRs you are getting just seem to come with the territory.  Welcome to the lumpy-tummy club.

I gotta say, it sure does give a nice bump up to the T-cells.

Offline Rusty

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Re: Fuzeon tender skin reaction
« Reply #15 on: February 04, 2007, 12:41:50 PM »
I was on Fuzeon for 18 months stopped using it last November. The ISR's do get worse over time but mine became unbearable. I do have haemophilia so that didnt help the situation either. Good drug that really does work if you can stick to the routine but i found it a total pain. Switched to tmc 114 and 125 undectable still.

Offline Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #16 on: February 04, 2007, 01:01:20 PM »
That's encouraging because that's possibly what I will switch to.  I'm on 114 right now with fuzeon but because I had a slight +100 VL blip last month my doctor said I can qualify for 125.  Any side effects from the 125?
"Iíve slept with enough men to know that Iím not gay"

Offline Rusty

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Re: Fuzeon tender skin reaction
« Reply #17 on: February 06, 2007, 10:34:48 AM »
I have absolutely no side affects whatsoever with tmc 125, after taking Fuzeon I wanted an easy regime. It seems that TMC 114 & 125 together are really effective. My viral load with Fuzeon was undectable for 17 months until I started skipping injections through having nowhere to inject. My viral load increased to 160 and it took 4 weeks to get it back down to Zero with the TMC combo.

Offline LES Jake

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  • Posts: 53
Re: Fuzeon tender skin reaction
« Reply #18 on: February 08, 2007, 05:50:48 PM »
So I need advice on how you  all keep your ISR's to a minimum. I've been putting a heat pad in the microwave for a few seconds and then on the area I'm going to use, I massage the area also before and after the injection and also follow with heat. I do not put my needle from Roche all the way in and am now trying to go in more perpendicular to my skin. Any suggestions or additions to what I'm doing? These ISRs are really bugging me. I don't like having to hide my body when I'm at the gym and want to take a shower. I'm proud of my body and want to keep that. Thanks

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Fuzeon tender skin reaction
« Reply #19 on: February 08, 2007, 09:28:50 PM »
then post some naked pictures Jake :)!

seriously, don't know what to tell you... just pull your towel up as high as possible

you're probably more sensitive to what it looks like than others would be
"Iíve slept with enough men to know that Iím not gay"

Offline jjmcm

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Re: Fuzeon tender skin reaction
« Reply #20 on: February 09, 2007, 11:37:49 AM »
Jake, I can feel for what you are saying.  I have been working out for the last 27 years and still have a good body except I am no longer comfortable showering at the gym due to the ISR's from the Fuzeon and the fact my butt headed south when I was on Zerit and Videx.  (the face I have had recontructed)

You just have to get over this.  I cried several times when I started Fuzeon and a few times since then.  I hate the ISR's, but none of this matters at all if you are dead.  If you are injecting Fuzeon, it is likely you have few options left to utilize.

I will repeat this again, DO NOT USE THE 27 G X 1/2" syringes with the Roche pack.  Go out and buy a box of hundred of the 31 G X 5/16" insulin syringes.  They are the best thing you can do to reduce your ISR's.  Nothing else makes much of a difference at all.

I have tried heat, cold, long massages and the ISR's remain.  It is hit and miss.  Sometimes they are minimal. (two days)  Others react strongly and will last 3-5 days.

It is frustrating and definitely the most disagreeable and painful regimen I have been on.  I finally accepted the injection part.  I just hate dealing with some of the reactions which I compare to bee stings.

If you go through a particularly bad period, knock yourself out with a benadryl capsule at night with an ibuprofen.  It will help slightly and sometimes allow you to sleep better.

This will become routine if not comfortable over time.  The big PLUS I try to constantly remind myself of is that for the first time in ten plus years, I now have had an extended period of undetectable VL levels under 50.  This has dramatically reduced my stress level.

Hang in there.  You can do this.  You will see.  I think you are dealing with issues beyond the acceptance of the Fuzeon therapy.  I think some of your concern sounds like the fact that other might be able to determine that you actually have AIDS.  It is tough when others can tell.  But, as my partner says, "Deal with the situation you are given and not the one you wish you had."

And, that is what I do every day of my life...

--JJ
« Last Edit: February 09, 2007, 11:40:42 AM by jjmcm »

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #21 on: February 09, 2007, 12:35:20 PM »
to philly 267:

check out bigmusclebears and look for musclejake

to jjmcm:

Thank you so much for your response and actually everyone who has responded/helped me to figure this out. For me, it's a quality-of-life issue. I will go get the needles you suggest. I will try everything I can think of to get this to be a minimum problem. My tcells before this all came about were between 150 and 200. My viral load was at around 3000. Not good enough for me feeling comfortable so I wanted a new regimen. Maybe there's an alternative to Fuzeon? One reason my body is important to me is that before I started to workout, I was very skinny. I've worked very hard at putting this body together and the last 24+ years being positive and 23+ years of going to doctor's because of HTLV_III when I started this process and was diagnosed with ARC. The gym is a very powerful place for me to work out frustration, get inside my head and feel like I have control over the virus (hey denial is a powerful drug). So for me to not be able to be naked at the gym, is a bummer, I love being naked, especially outside. Think of this summer and the beach!

I need for my life to be as normal as possible. I've never stopped working because I WILL NOT let this virus defeat me and that would have given the disease an advantage I'm not willing to give up and I've felt pretty good the entire time.

Thanks for letting me bitch and have a great Friday

Offline allanq

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Re: Fuzeon tender skin reaction
« Reply #22 on: February 09, 2007, 01:16:12 PM »
I've been on Fuzeon since Nov. 2003. As with jjmcm, my injection site reactions have only gotten worse over time. It's sometimes hard to find a suitable place to inject, since I have no many nodules from the prior injections. I did find that by pressing my arm against the back of a chair or sofa, I can gather up enough fat to make an injection there. The chest is another area that can be used. The area below the navel also works for me. My worst reactions are in the thigh and in the abdomen above the navel.

The Merck integrase inhibitor is now available in an expanded access program. My doctor told me that he expects that once it gets approved, many people will be switching from Fuzeon to the integrase inhibitor. It's been showing very good results in reducing viral load, and it's in pill form.  I'll be first on line to make the switch.

If you have trouble drawing out the Fuzeon solution with the thin needles, get an extra supply of 23 gauge 3 cc syringes (the same as those used to mix the Fuzeon solution). Use these to draw out the solution and then swap the needle on the syringe for the smaller one for the actual injection. An added benefit of doing this is that the shorter draw on the 3 cc plunger makes it easier to do the injection.

Allan
« Last Edit: February 09, 2007, 01:30:23 PM by allanq »
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: Fuzeon tender skin reaction
« Reply #23 on: February 09, 2007, 01:34:10 PM »
OK, I have to admit I jumped over to the other website to check out the pics.  Boy Jake, you are so lucky to have kept your butt through all of this.  Mine depresses me more than Fuzeon ISR's.  Particularly when the upper body is still fairly prime.

Back to the point.  I think you are coming around.  It takes a few weeks for you to accept the mental part.  Accepting the physical part is actually easier.  We all do what we have to in the survival game or we just relinquish the game.

BTW, what were you taking before the regimen change and what are you taking currently?  I went undetectable with Fuzeon before the EA opened up with the Merck Integrase.  Had I just been making the change recently and still had something else effective, I probably would have gone that route.  Was there another reason your doctor chose Fuzeon instead?

With CD4's in the 150-200 range you definitely needed to do something if you had options.

Take care,

--JJ
« Last Edit: February 09, 2007, 01:36:28 PM by jjmcm »

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #24 on: February 09, 2007, 05:19:53 PM »
I was taking Trizivir with Kaletra. So I could possibly wait until Merck comes out with its integrase inhibitor and then could switch from Fuzeon to this drug? Or is there something else to switch to? I've never taken Sustiva.

Offline jjmcm

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Re: Fuzeon tender skin reaction
« Reply #25 on: February 09, 2007, 06:10:51 PM »
Jake what oral meds did you change to when you started the Fuzeon?  Did your doctor do resistance testing to determine what you are most susceptible to?  What was the outcome?

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #26 on: February 09, 2007, 08:13:09 PM »
I also switched to Prevista and Tibotec's TMC-125. I am resistant to every thing except 3TC. Not quite sure if there's anything else that works for me. I'm also very resistant to any more ISRs! This is intruding on my body and quality of life too much. My life was going well. I will make an appointment with my doctor this week to discuss alternatives. I had so much shame with my body growing up, I over came that and will not go back there.

Offline jjmcm

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Re: Fuzeon tender skin reaction
« Reply #27 on: February 09, 2007, 08:43:48 PM »
I am glad to hear you are on Prezista.  It has shown strong results when used with Fuzeon.  On the other hand TMC-125 is not nearly as strong as the Merck Integrase Inhibitor.  I assume you have already taken Truvada??

Personally, with what you have left, I would probably do everything you are taking PLUS the Merck Integrase if I could get it. ( i don't think TMC-125 and the EA for the Merck Integrase are allowed technically)  You don't want to mess around with the virus at this point.  If I could not get both TMC-125 and the Merck Integrase, I would probably drop the TMC-125.

Remember though Jake, if you lose control of things at this point, you might wish that you had stayed on the Fuzeon.  Your image, the gym, the shame will not matter.  You might throw away the one chance you have .

I went through exactly the same thing in the fall of '05.  My CD4's dropped to around 100 for the first time in 20 years and my VL zoomed above 700,000.  My doctor told me either we get hold of the beast or I would be facing significant progression.

Hang in there.  Stay strong...

--JJ
« Last Edit: February 11, 2007, 08:28:29 PM by jjmcm »

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #28 on: February 09, 2007, 11:24:27 PM »
I forgot a couple of details. I am also taking Norvir and the Truveda(sp). I do think I"m going to go off the Fuzeon it's putting hiv too much in my life. I need for it to be a back burner issue. I will not put up with these ISRs. It's too stressful. Also will be looking into switching to the Merck integrase  inhibitor instead of the Fuzeon.

If my body doesn't look good, my mind will start to really get depressed and it's a complete quality of life thing.

I will be a dirty old man.
« Last Edit: February 09, 2007, 11:27:05 PM by LES Jake »

Offline allanq

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Re: Fuzeon tender skin reaction
« Reply #29 on: February 09, 2007, 11:36:45 PM »
Jake,
You say that you're also taking Norvir and Truvada. Norvir is almost always taken as a booster for another protease inhibitor. What other protease inhibitor are you taking?

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: Fuzeon tender skin reaction
« Reply #30 on: February 10, 2007, 09:43:12 AM »
Good luck with your choice Jake.

--JJ
« Last Edit: February 10, 2007, 09:48:22 AM by jjmcm »

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #31 on: February 10, 2007, 10:57:47 AM »
I'm taking Prevista. Total List:

Bactrim
Truvada
Prevista
TMC-125 (The name starts with an E)
Norvir
Fuze-on-my-skin

I wrote to my doctor about my displeasure with the ISR's so am going to look into switching to the EAP for the Merck integrase inhibitor.

Am I being foolish? Have to explore all my options.

Thanks for listening and helping,
Jake

Offline Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #32 on: February 11, 2007, 01:20:53 PM »
to philly 267:

check out bigmusclebears and look for musclejake


ah... bonus points for being uncut :)
"Iíve slept with enough men to know that Iím not gay"

Offline allanq

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Re: Fuzeon tender skin reaction
« Reply #33 on: February 11, 2007, 02:21:28 PM »
Jake,
You're on a lot of HIV meds:

1. Prezista/Norvir (this counts as one drug, since the Norvir is used to boost the Prezista)
2. TMC-125 (etravirine)
3. Viread (included in Truvada)
4. Emtriva (included in Truvada)
5. Fuzeon

If you're not resistant to the other drugs in your regimen, I wonder if you'd be O.K. just quitting the Fuzeon. Have you had a genotype done?  Did you add the Fuzeon because the remaining drugs didn't suppress your viral load, or did you just start all of them together?

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 Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #34 on: February 11, 2007, 02:41:16 PM »
I'm surprised that if you are on TMC-125 and Prezista that they also have you on Fuzeon.  I'm basically on the same regimen you are on Jake, less the TMC-125 which my doctor has suggested he will switch me to in place of the fuzeon around June unless my numbers move unsatisfactory before that time and then he'll get me on the trial.
"Iíve slept with enough men to know that Iím not gay"

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #35 on: February 11, 2007, 06:30:50 PM »
Hey Philly267:

What resources to you use to make sure you are on the right regimen? Or anyone else for that matter.

Thanks
Jake

Offline Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #36 on: February 11, 2007, 07:04:53 PM »
I'm just going by what my doctor's suggestion was, and from what I've seen on this board and in my "treatment experienced" small support group I attend.  I'd just not heard of anyone on that "three some" treatment.  Then again from what you've stated your numbers had dipped really low, right?  I guess you're doctor wanted to be really uber-aggressive for a while to get them back up. 

I'd still be interested in hearing of others on this fuzeon/prezista PLUS the tmc-125 though.  Just seems like overkill to me, but hey I'm not the medical expert.  The norvir and truvada additions make sense (I'm on those too).

What's your recent lab work again right before you went on all of this?  Like the maybe the previous 3 sets of numbers.  I can't recall where you spelled all of this out.
"Iíve slept with enough men to know that Iím not gay"

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #37 on: February 11, 2007, 08:25:37 PM »
My numbers have been for that last 8 years were around CD4 250 to 325, with a viral load of 3000 to 15000 to 25000. Now that I'm clean from drugs, my cd4s dropped from 150 to 200 but my viral load has been less. So I never felt I was in a dire place. I just want it all. I want my numbers to improve and my doctor suggested a regimen with Fuzeon and they didn't inform me enough about what difficulties there are surrounding that drug. I  thought the biggest part was learning how to administer it.

Offline jjmcm

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Re: Fuzeon tender skin reaction
« Reply #38 on: February 11, 2007, 09:21:53 PM »
Jake, there is a world of difference between 150-200 CD4's and 700 like Philly267 has.  Every decision you make at this point is critical.  I have been struggling to get my CD4's back up from the 100-200 range to the 400 range.  I have been doing cycles of IL-2 every 8 weeks to nudge them higher.

Without a buffer of CD4's, and limited effective medications, you are vulnerable and risks increase with CD4's below 200, under 100, then below 50.  As my doctor told me in late '05, "You must extinguish the fire while you still have agents to do it with."  If you do not use enough to accomplish this and keep the viral load down, it is possible for additional resistance to develop and leave you with few options.   If you do not have at minimum two medications in different classes to utilize, it is likely you will develop resistance quickly to one new agent.  This can lead to sequential monotherapy which is very undesirable.

I have not had the fortune before now to become undetectable.  It has taken Kaletra, Invirase, Epzicom, and Fuzeon.  For most of us on long term therapy, the nukes are providing limited assistance.  For me the major agents of suppression are the PI's and Fuzeon.  I considered dropping the Fuzeon once my VL went below 50 for about six months.

However, another aidsmeds forum member on a similar regimen convinced me otherwise.  He recommended that I continue with the Fuzeon.  His name is Rab and I appreciate his postings.  They encouraged me to deal with the injections regardless of how bad they looked, felt, or inconvenienced me.  His advice was absolutely correct and the results have been an undetectable VL under 50 for over a year.

You are going through what we all did when we started Fuzeon:  It is the drug you love to hate.  It works though.  I am saving the Merck Integrase for my next round.  I plan to use Prezista and hope that I might get the likely successor to TMC-125, TMC-278.  It appears to be much stronger than TMC-125.  I might also have an oral entry inhibitor available to me by then.

So Fuzeon for me is a bridge back to a completely oral regimen.  And, on that day I will celebrate.  Fuzeon is a medication that must be combined with new effective agents.  If you dump it and lose control of the virus with nothing new left to combine it with, you will have wasted this opportunity.

My two cents.  Stay on the Fuzeon.  Get a lab or two and then see what think.  Save as many options as you can for the future.  Because after developing resistance to Kaletra, and then to Prezista and TMC-125, you might be left you with few options.  And, I think I would want to find a way to spend as many wonderful days with your BF from San Paulo.  He is indeed worthy of a little pain... 

--JJ

Offline Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #39 on: February 11, 2007, 10:23:03 PM »
My numbers have been for that last 8 years were around CD4 250 to 325, with a viral load of 3000 to 15000 to 25000. Now that I'm clean from drugs, my cd4s dropped from 150 to 200 but my viral load has been less. So I never felt I was in a dire place. I just want it all. I want my numbers to improve and my doctor suggested a regimen with Fuzeon and they didn't inform me enough about what difficulties there are surrounding that drug. I  thought the biggest part was learning how to administer it.

I just find the fuzeon + 125 odd, but maybe I'm wrong.  I'd love for you to PM newt and gerry to see what they're thoughts are on this.  I thin maybe you can say on the fuzeon for ONE year, and say this with you doctor, but say after that you will stop.  That's perfectly reasonble.  Your health is more important than your fab body my dear... you can build it back up after you're off the fuzeon.
"Iíve slept with enough men to know that Iím not gay"

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #40 on: February 12, 2007, 09:53:08 AM »
JJ:

Thanks for your responses. I, however, do not think that every decision I make right now is critical. I make the decision to take a much calmer approach to this illness. I've been going to doctors and having my blood drawn and all that that involves for over 23  years. I ain't goin' nowhere anytime soon. I will continue to research what alternatives I have.

If I have to walk around the beach with big welts on my body, that is going to end my life alot faster than if I find a suitable med to take the place of Fuzeon.

I believe that my mind has played a major role in me still being here. My first boyfriend was always alot stronger than me but yet he always knew he was going to die of hiv. And he died 8 years ago today. Had his head been in the right place, he would still be here. He was a Harvard MBA graduate but could not manage his illness.

So I make the decision to manage my illness the way that makes my life the fullest. And this Fuzeon is really bumming me out.

Given all that, I may not be able to change this, I do not know that yet, but I am going to look at every option available.

And no matter what, I will be a dirty old man walking down 8th Avenue in Chelsea pinching young boys inappropriately, THAT is my goal.

Thanks for listening,
Jake

Offline jjmcm

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Re: Fuzeon tender skin reaction
« Reply #41 on: February 12, 2007, 10:34:06 AM »
Jake, any time your CD4's are under 200, decisions are important.  Ask a couple of the guys in my Long Term Survivors group who made bad meds decisions at the same point you are at and now have less than 50 CD4's and high VL's.  They both depended on their doctors to continue offering additional options when none existed. 

Things change rapidly when you have a health crisis that forces you to research everything and inform your doctor the path that "you" want to take.  You obviously have not reached that point and are still concerned with things like how you will look at the beach.

I hit the gym this morning with my partner as I do four times per week.  The body may not be the best it has ever been, but it still turns heads.  However, instead of worrying about the ISR's from Fuzeon, I feel good that my CD4's have climbed back from 78 at the end of '05 to 455 in January '07. 

And, I like having that little bit of buffer.  I hope you find the treatment that best fits your life.

--JJ
« Last Edit: February 12, 2007, 11:16:30 AM by jjmcm »

Offline Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #42 on: February 12, 2007, 02:23:19 PM »
Well Jake... you could take ONE year off from the beach, couldn't you?  You'll probably only be on fuzeon one year.

I no longer go the beach because my butt is so fucking flat that I look tired in my Prada swimming apparel, at least on public beaches in NYC.  I do however not mind private pools in East Hampton among friends.  We all must make trade offs for better health.

I do know, however, that overall I look THEN times better than before I started this new treatment.  On my trip to NYC last week every single friend of mine remarked that I looked WORLDS healthier than I did just two years ago.  That's more important to me than some ISR's that I can hide with a t-shirt.
"Iíve slept with enough men to know that Iím not gay"

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #43 on: February 14, 2007, 09:24:44 PM »
Has anyone ever used the stand=by nurses off the Fuzeon website? The Fuzeon Connection Program? I was advised to check this place out for advice as to best control these ISRs, but I got nowhere.  Anyone else have any information on this?  It was advised to me by someone quite knowledgeable about this subject matter. I'll ask him if there's something  I'm missing, but the nurse I spoke to offered to send someone to my home to watch me inject the drug and other than that just said what I had read in the material that came with the first box of drugs.

Now that I've excluded injecting into my legs, the ISRs are much smaller. I injected on into my chest and nothing really happened, reaction wise, other than it itched a bit. Is there  a reason Roche didn't what this area of the body used?

I've got my doctor working on getting me Merck's new integrase product and was also advised to  look into Pfizer drug who's name is escaping me.

I know I was  testy in the past week, but the ISRs on my legs were just huge and they freaked me out.

As always, thanks for listening,
Jake

Offline allanq

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Re: Fuzeon tender skin reaction
« Reply #44 on: February 14, 2007, 10:15:31 PM »
Jake,
Roche sent a nurse to my home to watch me do the injections, and I got a few tips that helped. I think it's a good idea. You'll have someone actually see your reaction sites, and you'll be able to spend some time one-on-one with an RN who is familiar with Fuzeon and the whole ISR problem. If Roche is willing to do this, why not take advantage of it? You got nothing to lose!

Allan
« Last Edit: February 14, 2007, 10:19:09 PM by allanq »
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 LES Jake

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Re: Fuzeon tender skin reaction
« Reply #45 on: February 14, 2007, 10:34:18 PM »
Thanks Allan, I'll give it  a shot. ;D

Offline Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #46 on: February 15, 2007, 12:42:58 AM »
I was given lessons at my doctor's office, but then again I was on a trial for the biojector.  Are they just handing out fuzeon without demonstrations of injections at your doctor's offices?  That seems rather absurd.

I stopped injecting in my thighs after the first month -- WAY too painful.  I must have missed, Jake, where you had said that was the real problem area.  I also pretty much gave up on my triceps so that really just leaves me with my abdomen.  They do not recommend other areas on the body with the biojector.

I still get the feeling that my ISR's are no where near as bad as some people.  I'd say only 30% of the time do I get bad lumps.  The rest of the time there's really no reaction, or if so very minor.
"Iíve slept with enough men to know that Iím not gay"

Offline LES Jake

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Re: Fuzeon tender skin reaction
« Reply #47 on: February 15, 2007, 11:31:52 AM »
Philly:

My legs was the reason I first asked this question. I just was not informed about how much the ISRs were going to be a  part of my life. The woman at the doctor's office told me that not everyone gets ISRs, a very "don't worry about it" attitude. Stupidly, I hadn't done my homework and knelt at the altar of my doctor and ended up surprised. I feel somewhat stupid, but thanks to this forum I can find out the true story about ISRs.

So now that I've eliminated my legs as an area of injection, the ISRs are much less, they still suck, but not nearly as bad and think that I can probably manage on this drug until the others come out.

Thanks
Jake

Offline Miss Philicia

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Re: Fuzeon tender skin reaction
« Reply #48 on: February 15, 2007, 11:39:18 AM »
I figured the problem with my thights was that there's not much fat there.  I'm very lean, and have some lipo (though only a stage 2 or so) but my legs have been thin and I know that's why it hurts too much.  There were some ISR's that were so bad that bascially half my entire thigh would swell up and get red, and be so sore I couldn't turn over in bed without waking up.  My doctor just said eliminate that as an injection site and I've been MUCH better doing that. 

Your first posts weren't clear that it was the thight area to me, or I would have said this much sooner.  I think you should stick it out too with fuzeon until the other stuff comes out.  The combo of it with the Prezista just does such marvelous things that it's completely worth it, at least to me.  Even just physically I have SOOOOO much more energy, rarely if ever have diarreah (PI's were just the death of me in that respect) and my doctor swears that my face is filling in slightly on its own and has also done so with other patients, but it only does this a little and takes about a year to notice much.

However, when I went to NYC last week for a trip and saw a lot of friends who had not seen me in a year or more EVERY person made the remark that my face looked better.  I'd kind of thought my doctor was just trying to be optimistic with me but maybe there's something to it.  I may still get Sculptra injections this year but I'd rather see what comes back naturally so when I get the injections I don't end up with a face that's OVERLY puffy.  I actually like some cheek bones,  just natural looking ones.
"Iíve slept with enough men to know that Iím not gay"

Offline jjmcm

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Re: Fuzeon tender skin reaction
« Reply #49 on: February 15, 2007, 02:31:14 PM »
Jake, I am glad to hear you are doing better.  A new member in my Long Term Survivor group showed up last summer in shorts with black and blue swollen thighs.  He said he had started Fuzeon and was injecting most of his shots in his thighs.

I informed him that most guys I know just don't have enough fat in their thighs to do it without bad ISR's.  He stopped injecting there, added his chest, and had his partner help by injecting occasionally on his back side.  This can include both your bum and higher in the back or flanks if it is tolerable.

I have very little fat on my body and cannot endure injections on the back of my arms.  My partner did it for a while there, but, the skin is just too tight.  I recommend staying away from tight skin as much as possible and injecting in looser areas.  I have found that my underarm area also works.  It is a little tender to inject there, but the ISR's go away fairly quickly.

You always want to be on top of your medical options when talking to your doctor.  A little extra research goes a long way when you are considering a change in your regimen.  Fuzeon becomes much easier to accept the longer you are on it with good lab results.  I personally will make sure I am reasonably confident I will be able to maintain my viral load suppression before I eliminate it from my regimen.

--JJ
« Last Edit: February 15, 2007, 02:32:52 PM by jjmcm »

 


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