So I finally had my neuro appt today. She said since all my blood work is consistently normal and even though I do not have any lesions, she wants
me to start one of the treatment anyways. She said because of my symptoms and multiple 'flare ups' she can diagnose me anyways, or at least enough so my insurance will pay for meds. I have a spinal tap next week...
She recommended Copaxone for now with possible IV steroids every few months if necessary once a month (but that part we'll wait and see about).
I was just wondering if:
1. Why Copaxone vs the others? Or why not? How do you choose?
2. Did anyone else get diagnosed/on meds without lesions?
Copaxone is one of 6 FDA Approved Long-Term drugs. Others are: Avonex, Betaseron, Rebif, Novantrone, and Tysabri (some problems with Tysabri). Novantrone is the first to be approved to treat worsening RRMS, PRMS, and SPMS.
Your doctor will start you on Copaxone and then if there is no effect, change to one of the other drugs.
I was diagnosed with MS in 1982 without any lesions because the equipment at the time was unable to pinpoint the lesions. The Evoked Potential Test along with elimination of other causes led to my diagnosis. I have had MS for 25 years and have not had any meds.
Welcome to the world of injections. Im going to answer your question from another standpoint. ALthough Jay is correct in the info he gave you, I beg to differ with the last part. Not too many people start on Copaxone and then switch to other drugs. Many people actually go the other way....
Betaseron came out first- its an Interferon. It had some side effects, but was tried and true for a number of years...shortly afterwards, Avonex came on the market...also an interferon, but slightly different...Avonex was great, however many people actually couldnt tolerate the Interferons, so Copaxone was developed. THe big difference between Copaxone and the interferons is that Copaxone is synthetic, its not a natural ingrediant found in the human body...with that, it doesnt have the same side effects that Interferons have. Now Rebif got introduced...Rebif and Avonex are exactly the same drug, but given differently. The powers who be decided that taking Avonex once a week, wasnt maintaining a steady blood level of the meds...too many people felt that once a week shots, made them feel "like they needed another shot by the 4th or 5th day", so Rebif was introduced to be given 3 times a week...in some peoples opinions, this keeps the medicine in the blood stream at a steadier level, thus never giving you the "I think i need a shot feeling".
Many docs start with Avonex or Rebif now and if the patient cannot tolerate the side effects, switch the patient to Copaxone...but also, many people take Copaxone for a few years then start experincing lesions again and then the docs will switch to Avonex or Rebif for a year to see if it helps, and to truly try to keep progression at bay. It can work either way...
Onto the reactions. All interferons give you a flu-like side effect for the first few months. It only lasts for 6-10 hours after you take your shot, and it does stop as the body becomes adjusted to the drug, however I wont kid you. I started out on Rebif, and the first few months were pretty bad (3 times a week) however for me, Rebif is the only drug Ive ever been on. I love it. After 3 months, the side effects stopped. After one year on it, I have no new legions and I feel great! Many doctors though, dont want to put people thru the side effects and feel more comfortable prescribing Copaxone. Copaxones' biggest drawback is it is injected every single day! The only real side effect I have seen or heard about, and it doesnt happen to everyone, is site injection reactions...red welts, soar spots, etc where you inject.
Tysabri, is something which is available for R/R MS, however the protocol to being on it, is much more stringent. At one time, it was taken off the market, however it is back- thousands of patients are using it- and doing well. In the US, they strictly monitor those on Tysabri...its not usually a first line of defense, although the manufacturer says that it should and can be- most docs are very hesitant to start patients on it, because it is a much stronger drug. Most docs (including my own) perfer to try everytying else first, and use Tysabri as a last resort...
Novantrone is used only for more serious and progressive cases of MS, no doc will start you on this, as the side effects are MUCH more serious and the need to put a patient on this drug is seriously evaluated before doing so.
I know I threw alot of info at you...and its confusing. I do know of people who were started on meds without lesions, because not everyone has lesions, and yet they do have Evoked Potentials, etc which meet the criteria to dx MS...its not that common, but it does happen. I also think that choosing a medication to go on is a very personal thing! You have choices of how often to inject...wether to inject sub-cutaneously (under the skin) or intramuscularly (into the muscle). For some, doing it daily helps them manage their symtoms better, for others doing it once a week is a better option- and then of course there is 3 times a week, which I do. Its truly a personal choice and no one can honestly tell you which is best...the good news is, you can switch drugs if one isnt working; keep in mind though that it takes up to 6 months before these drugs really start working, so most docs will want you on it for 6 months before they will consider switching you, unless you have a really bad reaction and it is determined that it warrnats a switch.
Again, alot of info, so if anything I wrote is confusing, please ask and Ill try to clarify it..
Myself and a close friend with MS could not tolerate the site reactions with Copaxone. She eventually was dx'd with PPMS and me, I take Avonex and everything considered, it hasn't been bad. Much worse with Copaxone. Guess you have to start somewhere. Just watch your injection sites and make sure you tell your nurse or Doctor if you are having reactions as they can be nasty in my friend and I's case. Best of Luck....remember to keep the faith
Thanks for all the input!!! Essentially my doctor told me she'd recommend I'd be choose between rebif and copaxone. She said for younger patients with minor symptoms at very early MS stages, she tends to recommend copaxone because it's easier to tolerate on top of a new diagnosis. She said something about it doesn't mean changing your life that much because of the flu....
I think I'm going to try copaxone for now and go from there, I feel like it's such educated guess work at this stage...
Rachel, whatever you do, its a big step committing to MS Drugs. Im proud of you. It sounds like you are doing your homework, which is the first thing you SHOULD be doing! Do the copaxone for 6 months....then, ask to have an MRI...if nothing has changed, you know you are on the right path for you...if things have changed, youll start thinking about changing drugs then...right now, your doctor is right with the side effects, youll have less of them...just remember that even with Avonex and Rebif side effects, they dont really last more than a few months, and for some people, they never get them at all...
Copaxone is a very good drug- and many people have had much success on it...be one of them!