Fuzeon and Injection Site Reactions (Reposted from the old forums)

[gerry]

Topic Title Fuzeon and Injection Site Reactions

Date Posted: Monday May 01, 2006 4:18 PM
Posted By: ppoz

I am not sure if I am doing something wrong or not but everytime I inject fuzeon I have a reaction. I have bumps, swelling, tenderness, etc. My Doctor says it is normal. I have seen posts about the biojector2000 and I am trying to get on a trial but in the meantime, what to do? I wonder if others can share their experience. I have been using the medication for about 1 month. I am certain I have followed all of the instructions. My reasctions last for almost a week so I am sure I am doing something wrong. I have plent of body fat so, sadly, that is not the issue.


Date Posted: Monday May 01, 2006 6:13 PM
Posted By: jjmcm

Make sure you are using 31 Gauge X 5/16" - 1cc - short insulin syringes. Do not use the syringes that come with the Fuzeon kit.
Go straight in all the way and do not go at an angle.
Use the portable massager immediately after the injection. Sometimes it helps to put a warm wash cloth over the site for about five minutes.
I also rub in an over-the-counter itch relief creme with diphenhydramine HCL 2%. I don't know how much it really helps, but it seems to make the injection site feel a little better.
Also, if you are injecting your thighs and having problems, a lot of people avoid them. I rotate between my chest, back of the upper arms, abs, and bum. I have my partner inject the places I can't hit.
Fuzeon is a pain, but given the potential results worth the misery.

Good luck!

--JJ


Date Posted: Tuesday May 02, 2006 3:55 AM
Posted By: ppoz

Thank you for the tips. I am using 1cc/ml 27G x 1/2" needles. Those are the supplies that came with the kit. I will ask my doctor for a prescription for the size needle you mention. I have only injected into my belly. I have been going in at an angle. Sounds like I have been doing most everything wrong!! I tell you, I am about to give up. I have never felt so much discomfort. I am 40 years old and have been positive for almost 11 years. Never have I used a medication (and I have been on several) that was so difficult and unpleasant. I have never suffered from the side effects that I was always warned about. With fuzeon, I felt depression almost immediately. I do not know if it is from the meds or because of the tourture that comes along with it. I will see how my blood work looks in about a week. Maybe that will cheer me up! Thanks again for the helpful information!


Date Posted: Tuesday May 02, 2006 6:25 AM
Posted By: jjmcm

Here in Texas and a lot of other states, a prescription for syringes is not required. I use Reli ON syringes that I buy at Sams for $13 per box of 100. That lasts about 7 weeks. If you are injecting alone, at least try your chest. Typically, it reactes less than about any place else. Just make sure to pull up the skin, inject in it, not the muscle. Also, if I lay on my side, I can inject my right bum myself. If you have anyone else around you, teach them to inject you in the places you cannot hit. The back of your upper arms get a little sore, but generally are better than the abs. The bum works well because there is a lot of area to rotate between.

I think the key for you is to switch syringes and rotate to more areas.

BTW, it is normal to get depressed when starting Fuzeon. It is a hard thing to accept at first. Particularly if you have been relatively healthy otherwise. But, remember, this is a bridge to new medications which should be more widely available in 2007. I look forward to a new regimen with TMC 114, TMC 125, an Integrase Inhibitor, etc. Key here, all oral.

--JJ


Date Posted: Tuesday May 02, 2006 8:30 AM
Posted By: rab

Hi PP:

You mentioned you have only injected into the stomach. That is probably part of the problem. You need to move around more and try injections in other areas, such as the chest (one of my favorite places), back of the upper arms (Someone has to help you with this area). (I never inject in my thighs--tried it several times--DID NOT LIKE THE RESULTS! ) Switching to the smaller gauge needles that JJ recommends might also help. Since you said you have plenty of body fat, then as I mentioned I think by moving the injections around a little more some of the severity will diminish.

If you do get into the Biojector study:

The Biojector has reduced the severity and duration of my ISRs. But I still get them. The Biojector also gives you the option of trying to inject into your butt (which you can do yourself without help). (It does not work on the chest however!)

Currently I use the Biojector in combination with the small gauge needles and it seems to be the most effective in terms of managing the ISRs. (I use the needles for my chest injections, the Biojector elsewhere.)

Hope this helps.

RAB


Date Posted: Wednesday May 03, 2006 5:01 PM
Posted By: Catman

Hey ppoz:
I also was depressed when I began with Fuzeon 3 weeks ago. Still am a little bit because it is torture. My problem is that I can barely grab a pinch of skin to inject . I'm all fiber and muscle. I had to stop going to the gym a month ago so my abbs will loosen up a little. My abbs are now the easiest place to inject though I remain there as long as possible until all is aching. When I inject in my legs I can barely walk for a few days and get joint pains. Sometimes the needle is no problem but the next day the area is swollen and a little red. I have twice accidentaly injected into the thigh muscle and it is hell afterwards. I know how to inject sub-cutaneosly because I've been injecting my sister for years some alergy shots, but I don't seem to be an expert at injecting myself. I even get dizzy sometimes injecting myself because the impression is too much for me. I sometimes fool myself and not think about the next dose when my next shot is close to schedule. You are not alone in this. Many of us are going through the same hell as you but the desire to LIVE makes us move forward. I hate Fuzeon because of the painful reaction sites but I'll have to stand it and get use to it. My mind is made up on this matter. For our bad luck, I read somewhere that the trial for a "one a day" injection didn't go well, so we'll have to continue with 2 shots a day. The bio- injector is getting good reviews, though. I hope FDA approves its use and my medical insurance covers most of it's cost. Be brave and continue with Fuzeon like the rest of us. Like we say at the gym; No pain, No gain...ooouch, it hurts anyways! Ha,ha.

-------------------------
Catman


Date Posted: Thursday May 04, 2006 10:04 AM
Posted By: ppoz

Thanks to all for the comments and words of encouragement. It is also good to know I now have an excuse for not going to the gym! Anyway, I have submitted my paperwork for the biojector trial. I have also requested smaller needles with my refill that should arrive in a couple of days. Unfortunately in Massachusetts, a prescription is required for needles so there is no way for me to get the smaller gauge without a bit of work on my part. Most of my injections are pain free until the next day and then it is hell. The mere thought of injecting in my arm or thigh, given the reaction I have had when using the belly, makes me cringe. No way in my arms or thighs. My partner has been unable to inject me. He can't bring himself to it because he knows the pain I feel. He is too concerned that he will do something wrong. My belly is big enough (sadly) for me to move around and not use the same location until the swelling goes down. Ok, maybe my belly is not that big but you get the idea!


Date Posted: Thursday May 04, 2006 10:09 AM
Posted By: rab

PP:

Give the chest a try--trust me.

RAB


Date Posted: Friday May 05, 2006 9:19 AM
Posted By: Christine

Hi,
The injection site reactions are pretty common. Some of mine can get pretty nasty, then end up bruising. I have tried rubbing the site, applying heat, cold, ice. Not much worked. I stated using insulin needles for my AM dose, and my husband uses the needles that come in the Fuzeon pack for the PM dose. The smaller needles are not safety needles, so when he gives me the shot we use the safety needles. The smaller needles have helped decrease the ISR's. Ask your Dr. if you can try the smaller insulin needles to see if they help the reactions.
Christine


Date Posted: Wednesday May 10, 2006 4:48 AM
Posted By: ppoz

I wanted to update everyone. I may not have mentioned in earlier posts that I am required (insurance company) to receive my fuzeon through the mail. A company in FL supplies it to me in Masschusetts. That darned medicine travels more than I do! Anyway, it was time for my refill and I asked for the smaller needle. Using the recommendation from an earlier reply to me and was sent them without question.
The smaller needle seems to help. Some of the reactions are severe while others are mild. An improvement over having them all severe! I have been trying to get on the biojector 2000 trial and have some resistance from my insurance carrier. I will fight that battle again today during my lunch hour!
The piece of good news I was given yesterday was that my viral load, in 2.5 weeks on fuzeon, went from 21,000 to 1,500. Dramatic results! The trade of for quality of life may not be the best but let's see if I go to undetecable a place I have not been in about 7 years!
Thanks again to everyone for the helpful hints.


Date Posted: Wednesday May 10, 2006 4:56 AM
Posted By: jjmcm

That is great news PP. I still have some reactions that hurt for a few extra days and some that stop after a day. Now that you have something working, make sure to NEVER skip a dose of Fuzeon for any reason. Your body can and will develop resistance quickly if you do. Also, I am fairly precise about my Fuzeon schedule since I do not have many options left. I never vary by more than an hour. I just want it to keep working!

Regards,

--JJ


Date Posted: Thursday May 11, 2006 3:57 PM
Posted By: Catman

I also just got me a box of insulin syringes. I mentioned it to my doctor (who thought it was as a good idea) and by chance a medical supplier was at his office and he gave me a box of 60 free. I could have hugged that man! I tried them yesterday and the needle IS better for penetrating the skin but todays shot gave me just a little reaction. I guess some shots will always have a reaction while others will not react at all. I'll alternate the syringes though because I do like the saftey cap that the regular kit syringes have. By the way, does anybody know how much a months supply of Fuzeon cost? I get mine free on a federal program so I don't have a clue!

PS( I've only been on Fuzeon for 3 weeks and my VL was 60,000 when I began the treatment. My next VL test is on June 20 and the results will be given to me at the beginning of July. I hope it goes well for me and I will post the results so we can continue to compare and analize the effectivness of Fuzeon. Among the secondary reactions, besides the area where the shot is injected, I have been getting small persistant headaches which are more bothersome upon waking up in the morning. I inject at 8:00 am & pm and go to sleep immediately after the evening shot. But in the morning my head aches. I've never been prone to headaches and it has begun since I started Fuzeon. Also, being a gym freak I have noticed physical weakness that has made me visit the gym much less than I use to. Now I go only once or twice a week because of muscle aching. I relate this to the medication and the body getting use to it but I would like to know if anybody has had reactions similar to these or other reactions. Also my appetite has reduced and I fill up after a few bites. I wonder whats going on?

-------------------------
Catman

[gerry]

(Part II)

Date Posted: Friday May 12, 2006 5:26 AM
Posted By: jjmcm

Hey Catman, glad you got your new syringes. Screw the ones with the safety cap. My partner who is negative does not even use them to inject me. The larger the gauge needle, the worse the reaction period. Take my word for it, you just have a better chance for a smaller reaction with the small insulin variety. You will still get reactions. They are generally shorter in duration and many are not as severe.

As far as side effects: I started having trouble staying asleep all night when I began Kaletra and Fuzeon. I have read that both of them have been known to disturb sleep. So now I am forced to take a Lunesta every night. Although my VL is undetectable under 50, I am struggling with holding and adding weight. I have worked out for 25 years and do so four times per week. As my partner tells others, "JJ eats anything that comes in his path."

If your weight loss is significant or you cannot afford to lose it, you simply must increase your caloric intake. Sometimes I find it easier to eat and gain weight after my testosterone shot. If you fill up quickly, add smaller meals in between the main ones. I have difficulty tolerating protein powders because I get nausea from them. So, I add peanut butter sandwiches with a glass of soy milk, cashews, and other snacks to supplement my regular meals. You can also add marinol or a batch of "special" brownies which always decrease my nausea, makes me hungry, and increases the volume of food I eat. It is a daily struggle though.

Refresh my memory as to what other background agents your are on. Are any of them new to your regimen and still active?

I had a significant reduction in VL after three weeks and when undetectable at three months. I credit the combination of Kaletra and Invirase together with Fuzeon. (Combivir also)

I just hope my cardiovascular system does not collapse from the significant increase in my cholesterol and triglycerides.

It is great to be alive today though. Enjoy it!

--JJ


Date Posted: Friday May 12, 2006 6:37 AM
Posted By: rab

PP:

JJ said:

"I had a significant reduction in VL after three weeks and when undetectable at three months. I credit the combination of Kaletra and Invirase together with Fuzeon. (Combivir also)"

The same for me, nearly 2 1/2 years ago! (substitue Viread/Epivir for the Combivir in my case). Fuzeon can give us heavily treated/multi-resistant strain HIVers a good durable regimen!

Good luck to you buddy and keep us posted.

RAB
(Who hates the site reactions but can live with them. Small price to pay!)

Edit to add: I don't have the headaches you mention, but the muscle wasting/weakness has been a problem for me for a very long time, even before this current regimen (so I don't think I can attribute it to these specific drugs). From time to time I do a 2 month course of anabolic steroids to help rebuild the muscle/strength.

RAB
(Who is scrawny right now.)


Date Posted: Friday May 12, 2006 9:23 AM
Posted By: Catman

Howdy jjmcn and anyone else interested in our emails;

I also take with my Fuzeon some big pills : Aptivus and Norvir. I just read the report from clinical trials and it does say that among other things, fatigue and headaches are common during their use. Weight loss has only been like 5 lbs at the most but maybe its that my muscles have reduced their size a little for not going to the gym as much as I use to. My triglicerides are normal but maybe they will shoot up after continuing with my meds. Cholesteral levels have never been a problem for me. I try to drink a chocolate Boost whenever I get hungry and can't eat at the moment. It does make me feel better afterwards. I will try to eat snacks between meals so I will not feel weak or loose ant more weight. As your patner said: I also don't let anything come between me and my mouth when I'm hungry! I just don't get as hungry as I use to. I fall asleep quickly after my last injection. No problem with sleep. I also have a negative partner who has been with me for the past 13 years and am trying to teach to inject me. Got an "F" last week when he pinched himself with the needle trying to take off the needle protector during the mixing lesson. That was the end of that. Another lesson is on schedule, today! Ha,Ha. By the way, the insulin syringes tend to make more bubbles while filling up and IS a bit harder to press when I'm injecting the fuzeon. Does this happen to you? Let me know. Now I'm going to check out what "marinol" is (you mention it in your email) Bye.

-------------------------
Catman


Date Posted: Friday May 12, 2006 12:48 PM
Posted By: jjmcm

Hey Catman.

Yes, the smaller needles make more bubbles in the syringe. They are a little tougher to fill and take a little longer to inject. However, the benefits are worth it.

I usually do the mixing of the Fuzeon in the morning for both doses unless we plan to travel. Then, for the injections my partner does, I fill the syringe and set it on top of a plastic container. He just wipes the area with an alcohol wipe and injects. If we are injecting somewhere with limited options for me like the back of my arms, he massages them for a couple of minutes to relax me. We always do it at home while I am lying on the edge of the bed, he stands next to me.

He pulls in various areas to see which one is the least sore from previous injections. Then, he has me do three deep breaths to relax. On the exhale of the third breath, he injects. He also is careful to not inject too quickly, particularly near the end. I find that is hurts a little more if you try to inject too fast. When I do my own injection in my abs and chest, I just go slow and steady.

Tell your partner to be very careful with the syringe after he has injected you. Many of the accidental sticks are when someone is putting the cap back on to dispose of it. (hence the safety syringes for the less graceful)

BTW, Marinol is synthetic THC capsules. I actually like brownies better because I can regulate the dosage.

--JJ


Date Posted: Friday May 12, 2006 2:08 PM
Posted By: Christine

Hi Catman,
Yes- the insulin syringes do have more air bubbles, and I think they are harder to fill than the ones in the kit. They also bend much easier than the kit needles. But I do have less lumps using them.

My husband also injects me in the evening with the needles from the kit. Similar to JJ, I lay in bed and pinch the area, then he stands over me and injects. It was hard at first, but we have a routine down now. I mix two vials in the PM usually before dinner. After dinner we do the injection, and I put the mixed vial in the fridge for the AM dose which I do myself before breakfast. When my husband injects me, I squeeze the spot, and he will inject with one hand, then pull out the needle, and snap the green safetly lid down, keeping his other hand away from the needle. Hope this helps!
Christine


Date Posted: Friday May 12, 2006 5:55 PM
Posted By: Catman

Hello jj and Christine:
Finally my partner filled up a syringe with sterile water after about 15 minutes trying!!! After he got over that, then he made his first mixing for me. We don't live together but he stayed until my injection time so he could see how that goes. I don't think I would trust him with the insulin needles because they do need a slow and firm hand when injected, and THAT , he does not have. I havn't tried the back of my arms because there is barely any skin to pull and I'd freak out if he got my muscle. There is a tiny space between the tricep and shoulder that could work but only with the insulin needles. About half an inch of skin can be lifted here but everything else is too tight because of the arm muscles. It will be a slow and patient procedure to get him to inject me but I guess I will trust him on that arm area and maybe an occasional bum shot. He's just not ready yet so I'll let him practice with the mixing for the time being. The syringe needles also pull out too easily while injecting. The contraction of my lungs while breathing accidentally make me pull out the needle before finishing. It happened today during my a.m. shot. I took a breath of air while injecting and out came the needle. It doesn't happen with the kits needles obviously because of the size. So I just pushed it back in until I finished. I have been on my ab section for the past week and a half. With the insulin needles I sometimes even forget where I injected last. Barely any reaction visible. My doctor still says that I should stick to the areas recommended by the Fuzeon Company for injecting. He mentioned something about the density of the skin not being the best in the back and bums. I will inject rarely on my bums but so far my abbs are doing pretty good serving as my "voodoo doll" full of needle pinches...

-------------------------
Catman


Date Posted: Saturday May 13, 2006 5:10 AM
Posted By: jjmcm

Catman, a lot of people start out by injecting in the recommend places. However, over time most people complain to their doctor about the ISR's. Mine told me while Roche may recommend subcutaneous in the "trinity" of spots, his experience is it works fine in both the chest and bum also. Plus, the chest and bum are my favorite spots by far. They almost feel like a holiday compared to the abs or thighs.

And, I have the same problem with the back of the arms. However, you will find that more than enough skin to work with. You just have to relax and let them pull a little.

As far as the needles pulling out, you need to make sure you press a little harder once they are in. It does not hurt any more, but will keep it from doing that. Plus, if you are holding the skin up like on the abs, you should be able to keep the needle until done.

You definitely want the variety of changing the places. I have a friend that uses his abs most of the time and he is frequently sore there a LOT.

In contrast, I feel like a little pin cushion all over.

Soon, the shots will be routine. I just don't think of them much any more.

--JJ


Date Posted: Saturday May 13, 2006 6:37 AM
Posted By: Catman

In spite of using my abs almost always for my shots, since changing to the insulin needles I don't have swollen areas that make me uncomfortable. As a matter of fact, I even continue to use the needles that the kit brings but ONLY in the areas that I can easily pull up PLENTY of skin. Legs are out of the question because they are the most painful and the irritation lasts almost a week. I haven't been there, anymore. Hey jj, are you talking about the pec area when you say you inject in the chest? If so, where? My pec muscles occupy almost all the space there. I have a medium frame and I stopped doing sit-ups or any exercise that tightens my ab area. Now I can pull skin much easier than before in that area. My arm area is my favorite body area but I don't plan on giving up my weights just to have another area to inject. I'd rather stick to my abbs. I will follow your advice on pressing the insulin needles a bit while injecting, so it won't pull out when I breath or move a little. I guess I'm just afraid of poking some muscle or body organ underneath...

-------------------------
Catman


Date Posted: Saturday May 13, 2006 9:23 AM
Posted By: Christine

Hi Catman,

I had not really thought about it before your post, but I realized I hold my breath when I do my shot, and when my husband gives me my shot. I don't use my arms either. I mainly use my thighs, and my rear end-love handle area.

Don't worry about poking a body organ, the needles are not long enough to do that. If you pinch the area, and hold the needle at a slight angle, you should not get the muscle. I have accidently gone into the muscle a few times, and it does hurt, but for me the ISR's actually hurt more than going into the muscle.
Christine


Date Posted: Monday May 15, 2006 10:25 AM
Posted By: jjmcm

Catman, I work out regularly and have trouble pulling skin on my chest. However, I keep the hair trimmed back some on my pecs and pull about a 1/2" or so of skin and inject in that. It takes some getting used to, but it really reacts less than just about any other place for most guys I know.

And, with the short insulin needles, you never have to worrry about going too deep.


Date Posted: Friday May 19, 2006 7:12 AM
Posted By: Catman

After reading so many comments on trying the butt area for fuzeon shots, well I finally tried it. It has been the only place where not even itching has been present after the injection. It went great. I am able to pinch skin from the top of my hip with my left hand and inject with my right hand. I've already done it on both hips and was surprised that it was possible to do alone and in a standing position. I do it in front of my mirror and sort of leaning on my drawer chest just to get my weight off the leg that I'm going to inject. Being right handed made the left hip easy. The right hip was a bit more difficult because of the angle of the syringe but I was able to make it through with the process. The lump that forms after injecting lasted around ten minutes then disappeared as if I never used the area. I did use the insulin syringes. Size does matter after all when it comes to injection needles...

-------------------------
Catman

[Jerry71]

bump to make  others aware of fuzeon