I'm trying to ignore my fears but after having almost two weeks to make a decision between the two, I'm just not sure. Six of one and half-dozen of the other...many of you have been there and I sure would appreciate your advice. I know that we're all different and will no doubt experience differences in the way our bodies react to medication.
I'm in a mind block and cannot get past either A) once a week, but the I'll get feverish and feel like I have the flu for about one day or B) every day, no flu but possible skin reactions or welts?
I usually feel good about my decisions and don't have trouble making them, but not this time. I meet with the ARNP at my neurologists office Thursday morning and supposed to be prepared to begin one or the other. I want to take the treatment but I'm over-thinking and feel confused.
I think I've figured out that it's not the needles as much as the flu thing or welts. I don't like the idea of an auto-injector because I've used them with Imitrex years ago. Any ideas on how to process all of this?? I really appreciate and welcome your feedback. Thanks, Deb
My neuro told me to get informed on the 4 disease modifying meds and choose one,well he chose it for me.I'm on rebif and other than site reactions,I have not had any flu like symptoms and its been going on 5 months.
With the copaxone its under the skin,the other is in the muscle.Daily injects your body is use to the same dose,once a week it slowly wears off and come the end of the week you may start to feel it.
With the rebif I can auto-inject or self inject.Its up to me.
Everybody reacts differently to these meds.
So when you say that "once a week, it starts to wear off..." I've heard other people say the same. Does that mean the injection helps with the MS symptoms enough to notice a difference on the 5th or 6th day? Deb
Hey Deb. Im with Nuffs here too. I have been on Rebif. I had some flu-like symtoms in the beginning, but they went away completely. Now, the most I get is a nickle sized red mark which lasts a day or two MAX. Nothing else. Rebif and Avonex are the same interferon...the difference is Rebif is 3 times a week, sub-cutaneous, whereas Avonex is once a week Intra-Muscular. What Nuffs is saying is heard often, which MIGHT be the reason Rebif came out after Avonex?? Just a guess. Because Avonex is only once a week, many patients complain that after 5 days, their body "craves" the drug, and they start feeling like its "gone". With Rebif, you inject 3 times a week and get to pick the days off you want (I take off Mondays-Friday and Saturdays- with shots Sunday, Tues and Thurs night). This way, the blood level of the drug is more consistent, and your body never really craves it...does that make any sense? The amount of Avonex is much more- the theory being that it SHOULD last you the entire week; however the complaint that it doesnt, well many of us have heard that.
I too, was given all 4 drugs to study and read about. Based my decision on the studies, the results of those studies, Rebif being the smallest needle avaialble and originally the idea of the auto-injector. WHICH I NEVER USE! I just inject with syringe...no big deal after you learn how. No problems, no reactions and after my first 6 months on it, a terrific result on my MRI. Now, Im into my second half of the year, MRI scheduled in September, and I can hardly wait to find out if its still working as well. It must be, other than small symtoms, no major relapses!!
Hope this helps...
good luck with your decision..and I suggest searching on this board under the different drug names, youll find zillions of posts!
I second and third what nikki and nuff said - do the research yourself and consider what you think will best fit YOUR situation.
A couple of things to know about Copaxone - aside from the fact that the company that makes it has their HQ at 435 and Holmes in KC, MO, in case you want to go "local"! :
Copaxone is unlike the other 3 in that it is not an interferon, and it is not an immunosuppresant. They aren't certain how it works, but it is a "synthetic" that supposedly tricks the immune system into attacking it rather than myelin. I'm telling you this in case you have any aversion for things that aren't natural.
Copaxone is likely to take twice as long as Rebif (6 months instead of 3) before improvements might be expected on your MRI.
I chose Copaxone because I was looking for the least possible disruption to my day to day life. It was a good choice for me, I believe. If you are having major attacks and/or symptoms it may not be the best choice for you.
Finally, I'll pass on the advice I was given by a friend. He waited a year to start meds because he couldn't decide. In that year one of his legs became permanently disabled. He said to me, "Don't wait to decide."
I've been on both Avonex and Copaxone with a good amount of time between. Avonex was better for me in the powdered version. Once the pre-filled came out, I didn't have a choice about which version I got and I had the flu every week for months! The "mild" Copaxone site reactions have been so bad that I can't wait 6 months to a year for my body to get used to it. So. I'm going no meds for now.
Oh my Lisa. I've heard that frequently about the prefilled Avonex. I'm seriously cosidering powdered Avonex because my skin tends to be so sensitive.
With the cost of the meds, it's a shame that whether it's insurance or "pap" that one would not have a choice on which form to take. I hope that you can get back on the one you prefer amd feel better soon.
I have been on both copaxone and avonex now on tysabri. The flu for me with avonex lasted until the next injection. I had to stop taking it I was on it over a year it never ended for me. After that I went to copaxone I am too thin to take it. It hurts when you hit muscle. How ever the MRI showed they both worked well. Now I take tysabri and I have no side effects from it. If you have enough body fat for copaxone the injection site reactions don't last long but they do itch pretty bad. Good luck in making your decision.
I have sensitive skin issues as well, which is why I think the site reactions with Copaxone were so bad. I haven't taken a shot for 3 weeks or so and I STILL have the "stains" from my last couple of rounds. So. Avonex has fewer incidences of site reactions because it's injected into the muscle. If I can get my doctor to prescribe the powdered version specifically, I think I might go back to it.