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Joined: Oct 2008
Posts: 49
Member
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Member
Joined: Oct 2008
Posts: 49 |
My first ISR was the day after my 6th injection. It was terrifying! The reaction was not directly over the injection site and it was hot and red. I thought that I had cellulitis! Then I did a search for enbrel injection site reaction on google and found this article on medscape http://www.medscape.com/viewarticle/515442I also felt amazing after my first injection. I don't know when the placebo effect changed into drug effect but I am still going strong. I ran a marathon yesterday (without training) and I am walking today.
I am not afraid...
I was born to do this.
-Joan of Arc
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Joined: Jun 2008
Posts: 134
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Jun 2008
Posts: 134 |
Quote:
I ran a marathon yesterday (without training) and I am walking today.
Impressive on two counts!
Paul
Running Blog
Endure and persist; this pain will turn to your good. - Ovid
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Joined: Jan 2009
Posts: 59
Active_Member
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Active_Member
Joined: Jan 2009
Posts: 59 |
Hey Kelly, I am glad that Enbrel is working for you, I know it made a big difference for me and I have occasional hot spots at the injection site but its not really an issue.I have been on enbrel for 5+ years, and it has worked great till lately. For the past 6+ months it dosent seem to work as well as before so i have been looking into some alternative treatments which seem to have helped. I have also seen an outstanding osteopath for the past 6 years and he keeps me inline( I couldnt do without either at this point. I would like to eventually like to get off enbrel as it is so expensive I doubt that I will ever be able to retire and still afford it, and the idea of being dependant on a drug that supresses the immune system dosent please me either. Anyways good luck. Art
TANSTAAFL
(There Ain't No Such Thing As A Free Lunch). R.A.H.
"Everyone's afraid, but that's no excuse" mind.in.a.box.
"The beatings will continue....."
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
Hi there, I'm so glad to hear you are doing so well with it. Running a marathon is impressive enough, but doing it without training and so early in your treatment is nothing short of awesome. Well done!!
Hugs,
Kat
A life lived in fear is a life half lived. "Strictly Ballroom"
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Joined: Apr 2008
Posts: 58
Active_Member
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Active_Member
Joined: Apr 2008
Posts: 58 |
Kat, I just started on the 25's and I must say, even though I am very careful about how I do the shots I bruise like crazy with these. It feels like I hit a muscle almost every time, even though I know logically that I'm not injecting that deep. I don't really mind the bruising, but I'm starting to look either like a klutz or like I'm abused, LOL!  I have had great luck from Enbrel from the start as well. I also have some screwed up discs in there messing with things as well, and that isn't entirely relieved of course, but overall my pain level, flexibility, and overall well-being has improved drastically. And my husband will confirm that enthusiastically, which is probably an even better sign that it really helps.  ~Raina
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
Hi there. My sweetie started on 50s, but found that they wore off by about the 5th day. So, we switched him to the 25s, which kept him more stable but then he got the Enbrel crash/high twice a week. So, he went back to the 50s and he's much better. I think the 25s helped to build it up in his system more consistently or something. How do you find mixing the 25s. My god, we were intimidated by that. I actually ended up doing all the mixing. You should have seen us. "Does that look like particles floating, or is it just foam?"  He used to make me do everything right up to taking the protective cover off the sharp. Then, one day, after we were finally satisfied that it was, indeed, just foam and not particles, I took the cover off and stuck my finger with the sharp!!! Didn't get any Enbrel in the cut, just needle, thank goodness. But then we were short a sharp because we had to use one from another kit. Egad, what a pain. After that, I started making my sweetie take the darned cover off the sharp!!  I wonder if it's your technique that's making you bruise. My sweetie bruised sometimes, too. I always figured that happened when he was in too much of a hurry. Never bruised on the arms when I did the injection.  Hugs,
Kat
A life lived in fear is a life half lived. "Strictly Ballroom"
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Joined: Apr 2008
Posts: 58
Active_Member
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Active_Member
Joined: Apr 2008
Posts: 58 |
Hehehe! I think it's kind of like having your first child...first child you're paranoid about everything...by the 2nd, 3rd, etc you know when you really need to worry.  Eeek on getting stuck though!  I had the benefit of doing my ex's Copaxone shot daily for years (for multiple sclerosis), starting back before they even used pre-mixed. I've done thousands of them...literally.  So I'm pretty comfortable with the whole mixing/injecting thing. I also am in medicine professionally, so it's not too big of a deal for me. I did notice that last time I *didn't* pull back to check if I was in a vein, and the bruising wasn't as bad. I'll try again today to see if that was really a factor or if I just got lucky last time. I'm a pale red-head and I do tend to go through easy-bleed spells anyway, so I'm sure that is a factor. My husband offered to pinch on my arm while I did the shot if I wanted to try it there, but I haven't yet. I had an awful injection issue with the pneumonia shot I got in my arm so now I'm a bit hesitant to do anything else there. Yes...I'm being a WIMP!  ~Raina
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Joined: Apr 2008
Posts: 58
Active_Member
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Active_Member
Joined: Apr 2008
Posts: 58 |
Just to confirm, the last three shots I didn't pull back on the plunger any to check for blood prior to injecting, and there have been ~no bruises~!! I can't say 100% that this is the difference, but if anyone else is having a similar problem with the mix-it-yourself 25mg shots it may be worth it to test it out for yourselves.
Cheers, ~Raina
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Joined: Feb 2009
Posts: 15
New_Member
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New_Member
Joined: Feb 2009
Posts: 15 |
I’ve been on Enbrel for a little over 5 years now. It took about 6 months after the FDA indicated Enbrel for AS before we could convince our insurance company to pay for it. After that it took 4 or 5 months to notice much improvement, and then things started getting much better and continued to improve for about another year before leveling off. I haven’t experienced the highs and/or lows during the week.
Originally, I had the twice weekly mix yourself 25 ml injectors for a year or two. Then moved onto the 50 ml prefilleds for a couple years, then the 50 ml sureclicks. With each increment they injection procedure became easier with the trade off being more sting. Other than the sting, I haven’t noticed any difference in performance.
I never felt comfortable pulling back on the plunger on the injectors, so I always just skipped that part. I’d say it would bruise up one or twice a quarter. As far as foam, verses clumps… I never really paid much attention to that either. Not everyone’s style, but it worked for me.
The biggest think I’ve noticed is if you let the medicine warm up to room temperature just before injecting, it usually diminishes the sting. My rheumatologist recommended this trick and it works about 2/3rds of the time for me.
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Joined: Feb 2009
Posts: 2
New_Member
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New_Member
Joined: Feb 2009
Posts: 2 |
Hi all. I've been on Enbrel for 3.5 years. I've been able to play golf for the last year after having to give up the game 15 years ago because of the AS. The last six months things seem to be getting a bit worse. Not sure if its because of all the extra exercise, a diet thing or the body is becoming immune to the Enbrel. Amazing what you can do when you are pain free for the first time in 25 years.
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