Published Aug 5, 2003
I have recently been diagnosed with MS and will be starting Rebif this week..............I hope. I have read about the side effects of Rebif but my question is.............Has anyone ever been on or is now on Rebif. If so, how are you doing and have you had any side effects. Wish me luck
Sorry, I can't help you.
I hope the Rebif works for you.
My husband started Rebif in March - when he gets home I'll talk to him more, but it doesn't seem like he's had a lot of side effects. That said, let me also say that the days of his shot he takes naprosyn in the morning and again at bedtime and tylenol arthrits strength at bedtime and the next am. (he takes his shots at night). He also ices the injection site 20 min before and 20 min after each injection. Last, but not least, his doctor started him on Lexapro (antidepressant) when he started the Rebif - he'll go off the lexapro when everything stabilizes.
Good luck. PM me anytime and I'll give you his email - or my sister's - she was diagnosed more than 15 years ago.
I just started Rebif on Monday. Not having pain with injections, but that's because I've lost all sensation in my lower extremities. I also take Naproxen about 20 minutes before my injections. I take it right before bed so hopefully will sleep through the worse of the side effects. Muscle aches, mostly. Tonight I'm noticing some insomnia.......
This is my third "miracle MS drug". I've tried Copaxone (had to stop due to shortness of breath, chest pains), and several years on Betaseron. Went from independant ambulation, (working full time, 50 to 60 hours a week, salaried) to cane,(job loss), then walker, now 100% wheelchair use (motorized, because of increased weakness in upper extremities).
I just received the approval from the insurance company for a trial of 6 plasmapheresis treatments. I'm really hoping this just might slow things down a bit for me. I have a new granddaughter due in a couple months and I really want to hold her.
Please don't let this scare you. The percentage of people with MS ending up in wheelchairs is much smaller than most people think. I was unfortunate enough to develop a pretty progressive version of this beast. I was diagnosed 4 years ago. I'm really doing okay. I learned to say "no" and to slow down, readjust how I go about things and to accept help from others. That was the worse for me. I took care of people and things I just hate/hated having to ask for help .....
The thing that bothered me the most was when a home health nurse who came to start an IV for steroids told me "you may have been a nurse, but now you are just a patient and a Neuro patient at that." My doc wanted her to just start the IV and I would hang my own steroids, she didn't believe that a "neuro patient" should be trusted with any type of drug administration on their own. My brain in still working, it's my legs that don't work.
Anyway, thanks for listening. You'll do fine with the Rebif. Have you been in touch with MS Lifelines? They can answer questions for you and help deal with side effects. You can also get a travel kit from them. It's a little carrying case with an ice pack (to keep the drug cold) and a sharps container. It holds a weeks worth of meds so you can travel with it.
You can pm me if there is anything I can help you with. Take care:zzzzz Time for some sleep.
Just wanted to give ya'll a group hug here:
((((((((((HUGS)))))))))) :kiss :balloons:
Thanks for the info. I got my first Rebif shot today. Also have called MS Lifeline several times. They are the nicest people I have ever talked to and willing to do almost anything for you. I got my travel packet, sharps and all that jazz. I pretty much knew about what you said as I did alot of reading on MS when I was told I had it. Sometimes being a nurse isn't good.........you know tooooooo much. Thanks again for your info. You can also PM me if you want.
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