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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


Hey Nuff. Well, if you keep up with me, you know that Im on Rebif...and hating it. Im about to post myself, to see what anyone can tell me about Copaxone, as far as results with it. Truthfully, Rebif is suposed to be the "in" thing to prescribe, and all the tests prove that it is the most effective in clinical studies for reducing legions, preventing relapses, etc...and in ALL HONESTY, the injections are the easy part. After 5 months on it, the injections, 3 times a week are easy as pie, but the side effects are totally killing me. They start you on a tritration pack...starting at 7 mcg, then 22 mcg and eventually working up to full strength 44 mcg. It wasnt until I was on the full strength for a full month, that I started getting the "flu like symtpoms"..now, every day , 5 hours after my shot, they kick in and make me sick as a dog for 24 hours...im hating it, and about to start begging my doc to take me off of it. So far, he has said no- he wanted me on it for a full 6 months before he made that decisision. I think he wanted to be able to say "see? No relapses"..but that didnt happen....

So, onto your next question IV STeroids..the big one which is prescribed is SoluMedrol...I have a nursing company who comes to my house, starts the IV, leaves the bags of meds, and (the first time) taught me how to administer the infusion myself. My husband helps, flushing out the veins and the IV, and he helps to hook up and take away the old bag...but, the SoluMedrol, which is a form of Prendisone, DOES HELP. Ive had 2 major relapses, both of which affected my vision and scared the heck out of me..both times, after one day, the medicine helped, after 3 days I felt better, and after the full 5 days, (1000 mg a day) I felt back to normal, or whatever normal is....all except for my hand. My initial MS diagnosis included the really bad tingling, burning of my left hand....that has NEVER gotten better. Ive learned to live with it...Neurontin doesnt help, Lyrica makes me sick, and if anyone has any other suggestions for nerve pain, bring it on...nothing seems to be working.

I think youll do well on the IV this time....but keep in mind that the first time, you do need the nurse to be there, to make sure you dont have a reaction, since you apparently thought you were allergic to steroids...also, SoluMedro leaves a HORRIBLE taste in your mouth the entire 5 days you are on it, so suck on sugarless mints...or candy canes, anything while you are doing the infusion, it does help...

it can also make you crazy emotionally. I find that the hour while Im doing it, I sometimes cry, or get upset....usually an hour later, I feel better...but by day 3, Im kind of weepy all the time...it takes about 48 hours to truly leave your system, so expect that for the better part of a week, you need to make others aware that this can be emotionally taxing to you...some people get a really wild streak, where they feel like cleaning their houses, others get tired... i am fine, except when I try to sleep at night, then all the sudden, im wired...I had my doc prescribe Ambien to help me sleep and it worked..
You poor baby, having to go thru both Rebif and Steroids at once...know that, no matter, what the first mont or two on Rebif is cake....and MOST people do adapt to the flu like symtoms...Im just not one of them. Ill proabably be on it another 3 months until the end of March and my MRI anyway..but in the meantime, I want to talk to others who are on Copaxone.
Also, you are right ...you and I had exchanged thoughts on LDN not long ago..it absolutely CANNOT be taken with Rebif....and truthfully, Im ready to try LDN and nothing else, but here in Jersey, cant find a single doctor to prescribe it with a dx of MS.
Good luck on this...remember, its to help you...and you can now join the ranks of the rest of us on Rebif...seems there is a huge number of us being put on it these days...that must mean something, right?
Hugs,
Nikki





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