My thickening skin, Ouch!

[Catman]

 I've been injecting Fuzeon for over a year now. At the beginning it was easy and not painful. Over time, and switching places to inject, various areas of my skin have hardened due to the frequent injections and now injecting is becoming quite intolerable. Very painful, and sometimes I just feel like crying due to this repetitive situation twice a day. I'm becoming desperate but will go forward with this as best as I can. My thighs are untouchable because of no fat, just muscle and veins, my hips are all muscle and the skin on my stomach is as thick as rug. I'm only using my pelvic area which is still soft, and a small area between my thighs and my waist. It does swell quite a lot but it goes away after a few hours and whenever my partner is home he injects the back of my arms. I can barely inject on the sides of my arms but I can manage on some occasions depending the light and if I can rest my arm on something to make a twist of my waist and look into a mirror while injecting. I didn't know I could do that. My question is, if I can use the skin under my arms (ribcage)? Has anybody tried on the back(shoulderblades)? My partner was pulling skin on various areas and asked me to post this question because he says he could manage a good injection on these areas. I'd appreciate any feedback on this matter. Thanks.

A desperate cat...



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[Miss Philicia]

Ah my precious, the fuzeon wonder drug does get like this at times doesn't it?  Are you using the normal needles that come in the box or the smaller diabetic needles?  I'm using the needle-less biojector if you recall but it still hurts somewhat... tolerable though.  I have the same situation thought that I can't inject anywhere except my lipo tummy pouch because the rest of my body is all sticks and bones.  If I inject in my thighs it swells up so bad I can barely walk.

As soon as Isentress is FDA approved I'm off this stuff.  Are you going to switch?

With fond wishes to my catman...

xxx

[Catman]

Uh, yes, dear Philly. I used those small needles almost immediately after those Fuzeon threads mentioned them way back when the med came out. I leave at the clinic those other needles that come in the box. I barely tolerated that horrendous needle to inject that the kit included. The small needle isn't my big concern, it's injecting the medication which is painful on occasions. And believe me, I've got a good hand for this. I even inject my sister her prescribed allergy injections which she has to get every 2-3 months, also subcutaneous. I do believe I'm going to try the ribcage. I hope the skin there is not too sensitive for pain. We'll see to that...

Almost forgot-I never did get a biojector because the trials had ended by the time I was prescribed Fuzeon. There weren't that many biojectors in PR anyways and most of them stayed in the San Juan area. I don't know if I will switch to the new drug yet. I will mention this situation to my doc on my next visit but that's in September 18th. I'll, also mention that drug interuption I had a few weeks back (when the clinic ran out of 2 of my meds for about 4 days... )

[Miss Philicia]

Everyone here that's been on fuzeon that I know is either on Isentress for a drug trial or switching upon FDA approval.  Roche pharmaceuticals will be very unhappy campers in a few months.  My doctor already has 40 patients on it and they're all doing well.

Best of luck, dear.

[Catman]

Good to know this. Thanks.

[Miss Philicia]

Catman, if you do a search on the board for this new drug you'll find a link to a recent article here in Philadelphia about the drug trials, etc. 

Also, in the poz.com HIV treatment news section I believe there's a video interview that Peter Staley did at the recent gathering in Australia with one of the speakers about these new meds.

I was cautious about switching at first, because my numbers have been so great, but once I read more and saw that folks that are in the trials had actually gone from fuzeon to isentress it helped alleviate any concern.  Plus a year and a half of injections will be enough for me, when I could eliminate it.  Also, switching does not mean you can't ever go back to using fuzeon in the future should you so need it.

edit:  here's the thread with the article

http://forums.poz.com/index.php?topic=13891.msg172909#msg172909

[Catman]

Oh, man. Am I glad you said that. It would be more than normal to be skeptical about switching after having great numbers in the lab results...I guess a year and a half of Fuzeon is enough for me, also. I see me with that new med before April 2008.

[allanq]

Catman,

As someone who was on Fuzeon for 3½ years, I am very familiar with the problem you have described. At a certain point, finding suitable places to inject becomes very difficult, and the reactions just get harder and harder to tolerate.

You didn't mention trying to use your chest for the injections. This area isn't listed among the approved injection sites in the Fuzeon literature, but I found that it works. If you have any fat in your chest area (like above the nipples), this area may work for you. I found that for several months I got very few reactions when I injected there.

Like you, I don't have much excess body fat to use for injections. I found that by pressing my arm against the back of a chair, I could gather some fat for the injections without having to rely on another person.

Roche is doing everything possible to keep people on this expensive drug. Try calling them at 1-877-4FUZEON (1-877-438-9366). They have a program where they send out RN's to people's houses to provide tips on injections. I learned about injecting in my chest and upper arm through this program.

I hope you'll be able to hang on until October, when the Merck integrase inhibitor should be approved. I was able to switch to the Merck drug in March through the Expanded Access Program. My VL has been undetectable since making the switch. It was a huge quality-of-life improvement for me.

Good luck to you.

Allan

[jjmcm]

Hey Catman.  I am in the same boat as far as running out of spots to inject Fuzeon.  A few months ago I stopped injecting my abdominal region because I was not only getting reactions the size of small eggs, I was having difficulty getting a whole cc to go in there.

I assume you are already using your chest.  It has been without a doubt the most resilient place on my body.  My partner does inject me two days a week on my back.  If you are lean like me, we have found the best places are just under the shoulder blades and then about half way down between there and the waist.

For the injection under the shoulder blades, I lie flat on my stomach with my arms down by my side.  For the other spot further down, I either stand next to the bed or sit in a chair with my back exposed.  It is important to make sure you do not inject too close to the center of the back (spine).  I had one injection there a while back and the spot has never completely gone down.  It itches from time to time.

I used the ribcage area when I injected the abs.   I still can do an occasional injection just below the pecs in the area above the abs.

While they do get sore, the areas to the side of your pecs (your underarm) and then toward the bottom of your underarm work also.    I have the same problems with my thighs.  I tried injecting between the blood vessels on the inside of my thighs.  One worked, another took a week to go down and left a hard lump.  I have had better luck on the sides of my legs (thighs).  We burned all the good spots on my butt up a while back. 

With my resistance profile, I am not comfortable with just switching out Fuzeon for an integrase inhibitor.  I will likely include TMC-125 (or TMC-278) with it.  I also plan to switch from the Kaletra and Invirase I am on to Prezista.

So, I just have to find a way to make it till next spring. 

Good luck,

--JJ

[Catman]

I'm finally getting the answers I wanted with this thread. Thanks jjmcm and allanq. My partner made me print your replies because he wants to read them carefully and try them out. He is in his doctor's degree in Biology so he knows more than me about whats under the skin. Life would be easier for me if we lived together, but no such luck, yet. In regards to the "other" injection sites, I have never tried my pecs. I'm a scared kitten for this area! It is a veeery sensitive area of my body and my partner is always there sucking that specific area. Sorry about that. But it's true. I think that any sensitive area in sex will be very painful for an injection. I will try injecting away from the nipples, if I have to, and my partner will have to suck somewhere else. And, I guess I'd better not lift weights too often if I want loose skin.
  What a coincidence when you said that flushing a whole cc was difficult. I've had a few occasions that I couldn't bare the pain and had to pull out the needle, just to inject close by and have the same situation repeat itself. Once, I had to pull out 4 times and re-inject again 4 times before finishing the dosage. It gets unbearable and you bite your teeth. It mostly happens when about half the dosage is already in. I just give up and inject at another spot to avoid the pain. I hate Fuzeon, but the benefit has been good.

[biotechboy]

I just started Fuzeon on the 18th, my doctor warned me about the ISR's , and being a Juvenile diabetic since 1985, I was thought I knew what he was describing. Boy was I wrong.  These reactions are nothing like insulin getting in the wrong place ( ie skin or muscle). The first shot seemed ok at first, but it swelled up like a big-ass spider bite by morning. I knew the Terumo syringes supplied with the Roche kit were crap. I had to use them once for insulin due to a generic substitution by a rookie pharmacist.

Anyway, I've been using a 1/2 cc insulin syringe twice, to deliver the full dose.  I use the same technique that I use for insulin even though its a considerably larger dose.

I clean a large area of skin, then touch the needle several times to find a place where I can feel it the least, then stick it in.  If it feels wrong, once inside, I pull it out without injecting and start again.

I've been making the two injections very close to each other, but I'm going to ask my doctor if I can make them on completely different sites.

Has anyone else asked their doctor about splitting the dose between two sites?

FYI , The ISR's on my thighs seem to take longer to heal than the ones on my stomach or arms.

[jjmcm]

Biotech,

I don't see any problem with splitting the dose as long as it goes somewhere.  In fact, I might be forced to do that in the future with the current difficulty I have been having with getting the entire cc to go in.  I might recommend if you are just starting Fuzeon to expand your rotation into as many areas as you can inject.

Include the chest, butt, and outsides of your thighs.  I generally do the left side of my body in the morning, and right in the evening.  I keep them somewhat even so I know where not to go the next time in that area.  (like I would forget!) 

Don't inject in the same proximity to a shot earlier in the same week.  That is asking for lumps and reactions.  If you go low on your abs early in the week, go high later in the week.  Keep it moving as much as you can. 

I used to have about five area to rotate through.  Now, I am down to chest, back, and then thighs/butt.  Last week I was able to bring my arms back far enough for my partner to inject the top of my shoulders above my triceps.  We usually cannot do my arms because I have no skin to pull there because of the muscle.

Stay away from really tight skin, release injection site gradually as you inject.  I also smear benadryl cream over the site afterward just to make it feel better.  I doubt it really does much than pacify me.

Welcome to the miracle drug straight from hell.

--JJ

[Christine]

Hi Catman,

I just wanted to send you my sympathies. I empathize with you in the lumps, tough skin, no fat areas.

Towards the end of using the Fuzeon, I injected where ever I could tolerate it.

Christine

[Catman]

Biotechboy- I'd rather inject one complete dosage in one spot than shifting to a different area with the same injection. I only switch to another area if it begins to hurt bad. If it doesn't hurt, then just be glad that you found a good spot that could take the whole dosage. I do find those spots occasionally, but NOT on my thighs which have been the worst place to inject for me. Those lumps were like a wasp sting! I also use benadryl but it barely relieves the itching. I rather massage the area with an alcohol pad. The cold feeling of the alcohol does bring me relief for a while, then I put the creme on.

[Catman]

Just wanted to say that this cat found the courage to inject in the chest area...finally. It was not easy, but I managed alone, as always. I made the injection about two inches north from the nipple. NOT a kinky experience! So far I've done it three times, but, today's second injection on my left pec did itch and swell a little, don't know why. May not try, for the moment, the ribcage area because I jumped just by feeling the tip of the needle begin to enter the skin. I think it's going to hurt...   That area I'll leave for later.
Oh, and just to copy allanq's avatar... here's my daily dosage (twice a day) ...still not easy!



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[allanq]

Hey Catman,

That's quite an attractive set of meds. Including the alcohol prep pads in the composition was a nice touch.

I notice that you're taking Aptivus (tipranavir). I used to take Aptivus but switched to Prezista. It requires just half the dose of Norvir. I felt a lot better after the switch--less nausea, less diarrhea.

Blondbeauty's avatar is also a nice picture of his meds. However, since he takes only two pills a day, his artistic options are rather limited. I wonder if people on Atripla can come up with an interesting display of their one-pill-a-day regimen.

Allan

[Catman]

Hey Allen, I guess that our regimen is more "colorful" than other peoples! I haven't seen blondbeauty's avatar in a while, but I'm curious because he does tend to be creative.
The good thing about my regimen is that I never had secondary effects since taking them; no diarrhea, no nausea, no headaches or pain, etc. The pills are "userfriendly" at least with me. Only injecting the Fuzeon has become a hassle. Hmmmm, I wonder if my pecs will get any bigger now that I'm going to use them as an injection site? Other areas do swell a little...

[Positive Living]

I've been using Fuzeon for about nine months.  Yes, certain areas where I inject are starting to show their wear and tear.  If there have been painful injection site reactions, it leaves a kind of "scar tissue" for an extremely long time.  The key to this is avoiding the ISR's in the first place.  Here are a few tips and tricks I learned over the past few months:

1.)  Don't use the provided needles.  5/16ths needles at 33 gauge works wonderfully for me, but draw up the Fuzeon VERY, VERY slowly to avoid bubbles.  The more bubbles there are, the greater chance of an ISR.

2.  Make sure the Fuzeon is at room temperature.  If you took it out of the fridge, make sure you leave plenty of time for it to come to your temperature.  Holding the bottle in your hand helps speed this along.

3.  Choose your injection site area very carefully.  Poke and prod to determine exactly where you have NO resistance from previous shots.   If you inject into former ISR scar tissue, you’re going to get a massive and painful ISR.

4.  Pinch the area to be injected.  (If you can’t pinch it, there’s not enough room for the Fuzeon to go in.)  Put the needle in at 45 degree angle.  Slowly release your pinch.  Inject the Fuzeon VERY slowly.  Remove needle carefully.

5.  Immediately take out your trusty Oster hand massager and deeply massage the injection area for at LEAST 10 minutes.   You can feel (and see) the bump "move out" from the spot where it was injected.   Continue to massage until you can't feel any Fuzeon near the surface, and then continue for an additional five minutes just for safety.   You may feel a minor itch, but this will go away in 30 minutes.  This step does take time and planning, but I massage as I watch television at noon and midnight.   

6.  Put yourself on some Zyrtec.   Oral Antihistamines do make a HUGE difference.   The ISR is a minor allergic reaction, after all.  If you have some antihistamines in you, you're not going to get a bad ISR.   I’d rather have a dry nose than a body covered in red welts.

7.  Even if you've followed all the above advice, you're still going to get the occasional bad ISR.  There's not much rhyme or reason to it some days.  But if you do, avoid any Fuzeon shots near that area for at least two weeks.   It just needs time to go down and heal.  Additional massage, while painful, is also helpful.   You might also want to pop a Benadryl or two if you're not already on an antihistamine.   Antihistamines WORK.

After nine months, I still am able to inject at every site I started with.   It's kinda like agricultural management.  You can't overwork a farm and expect continued results.  Do the same favor for yourself with your injection areas.   Rotate your injection site areas often.   Look for new areas to inject.   Inject carefully. 

And above all, be sure to TREAT your injection site areas right after you inject.  DO NOT wait until there is an ISR.   Do not even wait five minutes.  Time is of the essence.  You have to massage immediately.  Massage deeply with an electric massager, at least 10 minutes, every time, every injection site.  It makes a huge difference.

PositiveLiving@aol.com