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Tscotty
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Reged: 03/26/05
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Posts: 13
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new to Fuzeon
#139285 - 03/26/05 01:00 PM
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Last month after 13 years, millions of pills, and all the other stuff we go through - I saw "the" lab results indicating my complete resistance to every drug I have taken. Thursday I gave my first fuzeon injection -it sure was a scene. I actually did ok until I carried all that stuff into the house, set up my little fuzeon station, and proceeded to have a meltdown. Last night I went to give my fourth injection and just couldn't do it.
My mind was racing and all thoughts were of irrational nature. I even threw the syringe across the room (it was capped) then deep feelings of guilt set in and finally gave the damn thing. I hate this treatment modality but fear and guilt have me pressing forward. I'm not sure what I need to hear at this point but I feel pretty helpless right now. I would rather have a fuzeon enema or maybe inhaled fuzeon...This is my first sound off and this is only the beginning. Thanks for listening.
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Monchhichi
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Guru
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Reged: 02/07/05
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Posts: 248
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Loc: Florida
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It gets easier as you go. Also what may help is if you have a partner or friend who can help you rotate the injection sites. Don't give up on taking it. My husband went on it and it has been the best thing for him. I thank God every day for that injection. His counts have gotten dramatically better. You know the funny thing is now my husband would rather have the injection than to take any more pills. By the way are you having any adverse reactions to the injection site? Another good resource for Fuzeon is on this website. In the aslk the experts section under fusion inhibitors is Don Kurtyka. He is one of the most intelligent people you will ever have the opportunity to talk to. Are you not wanting to give the shot because of pain or just not wanting to shoot yourself? I know if I was in your shoes I wouldnt want to do it myself but I would. The number one reason? It is your life and that is what matters the most above all else. Put yourself and your medication as your TOP PRIORITY! Everything else will fall into place. If you have any questions I will be glad to help you if I can. My husband has been on Fuzeon for 1-1/2 years now. Every day gets better!
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Never forget: Life is too precious to take for granted.
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Thank you for your encouragement. So far I have had no adverse reactions or "ISR's". The needles are now ultra small compared to what they previously used. It's not really the needle stick that's got me as much as the idea that I have progressed to this point and everything seems to be accellerating towards the end. I am lucky that I am so meticulous about everything and it all has to be a production with me, not to mention my vanity (because I do not want to see any ISR's), I perform the stick quite well (I give my 6th one in a few minutes...) Thanks to people like yourself and your husband people like me have the benefit of your knowledge and I really appreciate where you have been. I have involved a very dear friend in this process in case I ever need an injection where I can't reach but as of now she ain't comin' near me with that needle...you should see her drive...ha ha...anyway today is so very different than yesterday and your response really made a difference. Thank you.
later
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Monchhichi
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Guru
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Reged: 02/07/05
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Posts: 248
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Loc: Florida
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Im glad I could help. I am also pleased that you are having a better day. Keep your head up.
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Never forget: Life is too precious to take for granted.
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TimmerInBigD
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I've been on Fuzeon since November 2003. and started having some scary ISRs (injection site reactions) to the point where I started delaying my injections by 10 minutes, then 20 minutes, then 45 minutes...all the way up to 3 hours later than scheduled. I felt like I'd run out of places to inject and it was getting too painful to re-inject in old sites.
Out of the blue, Statscript Pharmacies announced a trial using the Biojector needle-free injection management system in place of standard syringes. Members of my Fuzeon support group were encouraged to apply for these Space Age injector guns that are powered by carbon dioxide cartridges.
Remember how "Bones" in the first StarTrek series would press a gizmo against the neck of a Trekker, then there would be a hiss and the patient received a life-saving dose of some miracle serum? Well, the Biojector is several times larger than the unit Bones used and you definitely wouldn't press it against your neck, but it's a great deal easier than a syringe. Even more important, the delivery site recovers a lot faster than it did when I used a syringe. You do have to have enough padding to withstand the "zap" from the Biojector, otherwise you might wonder why you discarded the syringes. The Biojector is also easier to use for those spots that were impossible to reach with a syringe.
I don't believe I would have maintained scheduled Fuzeon injections much longer if Statscript's trial hadn't made the Biojector available, even though my lab results have improved with Fuzeon. I was on the verge of missing an injection every 2-3 days, but the Biojector has helped me stay on schedule without risking resistance. Bless you, Statscript!
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Monchhichi
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Guru
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Reged: 02/07/05
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Posts: 248
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Loc: Florida
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Statscript wanted my husband to start on it and I have just a few ????. How long have you been using it now? Are the ISR's the same or is it more like brusing from the compressed air? I like the fact that the ISR's dont last as long. What does the "zap" mean? Is it like a quick sting that is over quickly? I could go on and on and i have asked all these same questions to Statscript and my husbands Dr. There is nothing like someone that is on it though. The needles dont cother him that much so he decided to stick with those. I still like to have the info handy in case things change. Good luck with this. Also isnt it amazing ho good your counts have gotten with Fuzeon!!!???? I love that stuff!!! Oh yeah, what kind of ISR's were you having from the needles? You said they were "scary". How bad?
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Never forget: Life is too precious to take for granted.
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Tscotty
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Member
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Reged: 03/26/05
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Posts: 13
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Hi all,
Well I have been on fuzeon for one month now. A viral load was drawn yesterday and I'll know in a couple of weeks the results of that. (tcells good - viral load high, resistant to all other classes of drugs - so undetectable viral load is what I'm after ) Also in study with a new class of protease inhibitor (Trimpanivir )+ low dose norvir + truvada
Overall the mixing and injecting process has gotten easier but I still hate it.
I had a week or so there where I had ISR's with every shot.
I discovered that I wasn't pinching the skin "big" enough
I don't have alot of body fat to begin with so my sites are more vulnerable. I am currently in a study using smaller and shorter needles in an attempt to prove fewer site reactions.
I am convinced that everyone will get some form of site reaction with every injection. Some are raised and pink and hot to touch and last for days while others are like unseen bruises that last only a day.
I ran out of the study supplied brand name syringes and had to get some walgreens brand to hold me over.
I have had fewer severe ISR's with the short needle walgreens brand syringe.
Wiping the needle with alcohol after drawing up the med, mixing only one dose at a time (never storing a premixed dose in the fridge), injecting slower than faster and aiming the needle straight down, rubbing the site with benadryl cream a few minutes after injection, and popping about 800mg Ibuprofin about an hour later seem to help reduce the length and severity of ISR's.
I am convinced that the fuzeon contributes to depression. Maybe not the drug itself but the overwhelming aspect of mixing, injecting, dealing with ISR's, recording injection sites - it has the potential to alter your routine and you are obligated to adhering to this strict injection schedule.
But-if it works...it's worth it!
Remember Crixivan? - remember those chewable battery acid tablets in the '90's (ddi?) - nasty.
Fuzeon is not that bad now that I think about the past.
Today I have no evidence of an ISR anywhere on my body.
That's a first...
love to all,
Tscotty
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Hope your doing well. I might start a new injected drug they are testing. I was asked to join a reserch study on T-20. This new drug will be in pill form once the study is done. What the drug does is coat the virus so it can not attach to the cell. It is not 100% effective, but in combination with other drugs, it can make you go undetectable. The drug combo they want to try is t-20, saquinavir, ritonavir, tenofovir, and truvada. I have also read something interesting about stem cells, but if I choose to do the stem cell injection, I will not be able to participate in the study. You might look into the t-20 research and see if there is any in your area and it might be a new drug to try since your already using injectables.
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Monchhichi
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Guru
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Reged: 02/07/05
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Posts: 248
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Loc: Florida
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You might want to check further into that study as T-20 is Fuzeon. I have heard nothing as of yet of it becoming available in pill form. Check out the experts section on ths site under fusion inhibitors. Maybe there was some miscommunication somewhere? Maybe even on my part? Good luck with your new trial!!!
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Never forget: Life is too precious to take for granted.
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IM1RU12
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Newbie
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Reged: 08/14/05
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Posts: 7
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Loc: New York , Patterson
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Yeah Been there Done that with the 13..millionth Pill, Hey remember at one time only ONE Pill was available and that was AZT...the old days....
I'm getting ready to start..T-20 so I want to hear the WAR Stories...are you taking any oral with that..???
Spoke to ID Doctor a Pill in trial which is BETTER than T-20...will come about in a few months or 2006...let's all say a little prayer....for sooner...
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