So, I was told by my MS specialist that I should research and see which one looks best for me. Trouble is, when you read Copaxone literature, they make THAT one sound the best. The you go and read Avonex literature, and suddenly THAT one sounds the best.
How do you choose? I am so confused. Please help. Testimonials - positive or negative are welcome.
Its true that they all make their drug sound like the best. You do have to do your research and you do have allot to learn about each drug to make your choice. Heres what might help:
Copaxone does not work like Avonex or Rebif- its a synthetic drug given every day subcutaneously....side effects are minimal, however the injection site reactions range from red welts to severe impressions (dimpling) of the skin.
Avonex and Rebif are the same drug- both interferons. Avonex is given once a week into the muscle, while Rebif is given 3 times a week, subcutaneously. Avonex was brought out a year before Rebif, and Rebif was introduced second, because patients (sometimes) found that only doing the shot once a week, caused the blood levels to drop off, giving them a "need my shot" feeling towards day 5. By doing Rebif 3 times a week, your blood levels are more stable and you dont get that feeling.
Rebif has the best results statistically for reducing relapses and additional lesions on MRIs. This info can be found by looking at the clincial studies and test results.
Rebif and Avonex have side effects for the first few months that you are on the drugs. These side effects are "flu like symtoms". Speaking from exerperience, they last about 7 hours after you do your shot. SO, if you do it at dinner time, by the time you wake up the next morning, they are gone. however, those first few hours are chills, nauseau and sometimes the sweats...NOT everyone experiences the side effects. I know of many people who dont have them at all. With Rebif, they stop by month 4 or so...with Avonex, they last up to a year, reason being, the body doesnt get used to the drug as quickly because you are only injecting once a week. Both Avonex and Rebif have ways to manage the side effects. Should you choose one of them, there are all kinds of suggestions we can give you to help you along.
I started on Copaxone and had a horrible allergic reaction and had to stop the first week. I went to Rebif, and have been on it for 4 years and have not had a single relapse or new lesion- and I started with over 50 lesions on my brain. I work 50+ hours a week, go to school full time (graduate level) and have 3 kids. Even when I had the side effects when I first started they WERE managable and they didnt interfere with my life.
Getting used to giving yourself any injection is scary and overwhelming, but it actually isnt that hard to do and you get used to it quickly. Whatever you decide Im sure many people here will help you along with helpful hints.
I don't know whether this will help or cause more confusion, but here goes:
I've been on Copaxone for two and a half years, with no relapses since a month after i started ... site reactions for me are invisible but involve burning whie the fluid is absorbing (about 20 minutes every night.)
I've had two atypical IPIR reactions, both during an injection but neither one followed the IPIR descriptions and doctors said the timing was coincidental. And so I have continued, and have no new lesions since beginning.
I have never had symptoms that required steroid treatments.
My doctor recommended Copaxone because he knew I would not be compliant with a medication that threatened to take me out of the classroom once or twice a week. I know the interferons don't do that to everyone, but I wasn't willing to risk it. Copaxone causes none of those symptoms, and risks no liver damage, etc. So it was an easy sell, despite the nightly schedule and the 20 minute burn ...a constant reminder of MS itself.
I'll continue until I retire in a few years, and then will probably stop. It is a medically-lonely treatment, and I thank God I have my husband's support. Doctors don't ever discuss it, don't ever ask how it's going ... they just prescribe it and send you on your merry way, or tell you to talk to the telephone nurses connected to the drug manufacturer ... they are pleasant but very far away, and it feels so impersonal to talk to a stranger about your concerns.
I resent that the pharmaceuticals haven't found a way to formulate the solution without the after-burn ... no big deal, they may think ... it stops ... but it's unnecessary in today's world of analgesics ...
And as for the promise of the oral meds ... they haven't been around enough yet to prove whether they are side-effect free or not ... and I'm not risking my digestive system, which so far is working fine.
As one poster here said when I was beginning, don't agonize over choice - we're all individuals, we all react differently, and you can always stop and try a different one after a while ...
If they would make it a more humane treatment, like the care that Tysabri patients receive every month from dedicated nurses, I might continue it. But right now, my feeling is that it's my best hedge against progression before retirement, but once I'm free to, I'm done with the treatments.
Wishing you well with whatever you choose.
"I can do no great things ... only small things, with great love."
~ Mother Teresa
This is excellent feedback- I hope it helps you. But, I would like to add that my Rebif nurse, called me every night for the first 2 weeks that I started doing my injections, came back to my home and saw me at least 4 times in the first 3 months...and calls me every quarter even now- 4 years later, to ask how Im doing. I also get calls from MSlifelines (Rebif sponsor) randomly asking how things are, if anything new has developed, etc. I honestly feel that they DO care about me. They also correspond with my doctor every 6 months, asking for feedback on my experience with Rebif. I have to say, Im not at all feeling like this is a lonely journey...
Just alittle more info - Im certainly not pushing Rebif. Just letting you know that not all drug companies give the same impression.
I must be missing something here.... I thought the choice was made according to where you are getting more leisions.. I thought avonex and rebif were better at keeping overactive immune cells out the brain by blocking blood=brain barrier. And that Copaxone acts as decoy, distracting immune cells and in turn acts more to protect what is outside the brain. I started and still inject copaxone for 3 1/2 years, though after an MRI that showed a bit more leisions on brain, he considered for a moment to change me, but didn;t...
I wonder sometimes if there are any kind of kickbacks... I wonder why we do not take two different kinds to fight on both fronts.....
Anyway, I am glad we can have this discussion,,, When my brother was sick, they did not have any of this....
Its true that the drugs work in different ways; however what you said about it having to do with where you are getting new lesions has nothing to do with it. Some people cannot tolerate the interferons for whatever reason, liver issues or just unable to handle them. Some people, like myself are deathly allergic to Copaxone! I had two shots and almost died from severe breathing issues from them..
The drugs work in different ways, what might work for one, might not work for another. Rebif is the strongest drug on the market with the highest efficacy. Copaxone is actually the easiest to manage and has the least side effects..Avonex and Rebif are identical in every way, except how they are taken. Rebif is 3x a week subcutaneous, Avonex is 1x a week, intramuscular. Avonex is a lower dose than Rebif making it slightly less high in efficacy, however the advantage of starting with Copaxone or Avonex, is that they can always change you to something stronger if the drug stops working well for you.