jtr612
07-31-2006, 03:43 PM
After solu-medrol treatment and a medrol pack and an MRI, I finally hed my appointment with my dr. today. The bad news is I have an active lesion in my neck and a few new but inactive lesions on my brain. My brain is quiet and my lesion in my neck is causing an exacerbation that has not gone 100% away even after my treatment.
My dr. did not beat around the bush, she wants me to start Rebif right away :eek: , after about a year she said I could try to have another baby if I wanted to. at this point, I am not sure if that is in the best interest of my 2 1/2 year old and another little one. I worry about being able to be fully functional and there for them as time goes on :confused: . ANyway, that is another thread sometime.
Bottom line, can anyone tell me the good and/or bad about REBIF? I don't know anything about it. I would like to know if it has caused more problems or has been a positive experience for anyone. When you have started medication, any medication, what has it done for your symptoms, flare-ups, progression with MS? :confused:
Thanks for any help that can be given to help me be better informed.
Tara
My dr. did not beat around the bush, she wants me to start Rebif right away :eek: , after about a year she said I could try to have another baby if I wanted to. at this point, I am not sure if that is in the best interest of my 2 1/2 year old and another little one. I worry about being able to be fully functional and there for them as time goes on :confused: . ANyway, that is another thread sometime.
Bottom line, can anyone tell me the good and/or bad about REBIF? I don't know anything about it. I would like to know if it has caused more problems or has been a positive experience for anyone. When you have started medication, any medication, what has it done for your symptoms, flare-ups, progression with MS? :confused:
Thanks for any help that can be given to help me be better informed.
Tara
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LaLady
07-31-2006, 04:47 PM
Tara, I am not on Rebif but I just wanted to tell you I will be thinking of you and wishing you all the best. I went on another of the MS meds about 4 months ago and had WONDERFUL results.
I went from a non-functioning, double visioned, exhausted, drunken/wobbly zombie to almost my normal self! Still a little wobbly but can live a pretty normal life.
Good luck!:wave:
I went from a non-functioning, double visioned, exhausted, drunken/wobbly zombie to almost my normal self! Still a little wobbly but can live a pretty normal life.
Good luck!:wave:
hkholwerda
07-31-2006, 05:04 PM
I was supposed to be on Rebif, but my MS Specialist got frustrated with the pharmacy because it was taking too long so I am on Betaseron. Either way, I have heard wonderful things about both. On another positive note, I have a dear friend who has had MS for 30 years, she has 6 children, and she is doing fairly well at the age of 66 :angel: Remember to stay positive, I am a firm believer that everything happens for a reason!
Take care,
Holly
Take care,
Holly
purfik
07-31-2006, 05:05 PM
Ask your doctor for the Rebif information package. It is a carry bag with manuals and cd's that tell you all the in's and out's and the good and bad affects. I was dx'd in January of this year and my doctor wanted me to start on Rebif. I was given the package to study and it helped alot in my decision. I started my Rebif shots March 2nd and have done great so far. My side effects have been mild, a few aches in the joints now and then. The shots have had a positive affect on my MS. As you will learn this disease shows itself differently in each individual, as will the shot's side effects. Some of the side effects can be flu-like symptoms, injection site reactions, depression, liver and/or thyroid problems. Like I've said, I have been very lucky because my side effects have been mild to nothing. I've taken pills that have given worse side effects than my shots. I wish you the best of luck on this journey. MS tries very hard to take over your life but if you hold on the the reins tightly, you'll control the ride.:wave:
jtr612
07-31-2006, 06:18 PM
What is the other medication that you are on, if you don't mind me asking? Thanks for the kind words!! I am really trying to be positive but it is very very scary. The unpredicatability is very frightening in itself. I am really hoping for good results from this medication and I hope it is a good choice on my dr.'s part. As a teacher I have been off all summer and being that I am starting medication ASAP and I will be returning to teaching full time next week, I am a little nervous, OK a lot nervous. I hope to hear from more people about their experiences with or without REBIF so I can get a good idea of what medication MAY do for me. I was diagnosed in October and have waited to start meds becasue we were trying to have another child but now I am wondering if I have waited too long to start meds because I have developed this new lesion that is causing me so much trouble. I just hope that the lesions that I already have stay inactive because I fear what may happen if they do become active. Like I said the unpredicatability is frightening in itself.
Thanks again for the kind words and I am hoping and praying for the best.
Tara
Thanks again for the kind words and I am hoping and praying for the best.
Tara
LaLady
07-31-2006, 08:07 PM
If you were asking me what I am taking, it is Avonex. I have tried to stop mentioning it so much cause I sound like I am advertising for them!
Best of luck to you, what age level do you teach?:)
Best of luck to you, what age level do you teach?:)
jtr612
07-31-2006, 09:22 PM
I teach kindergarten/1st grade - special education. It can be stressful at times but I vowed to not let it get to me this year, I can only do what I can do, as long as I have tried my best.
I don't know much about Avonex, or any medication for that matter but my dr. seemed pretty certain about what she likes to prescribe. I just hope that it is right for me.
I don't know much about Avonex, or any medication for that matter but my dr. seemed pretty certain about what she likes to prescribe. I just hope that it is right for me.
SHAWN2426
08-11-2006, 01:42 PM
Just Curious, What Were Your Sypmtoms With The Active Lesion In Your Neck, I Also Have And It Is Causing Pain In My Fingers. I Did The Iv Steriods And The Taper Prednisone By Mouth And It Has Not Helped Me At All. Please Respond
hendrie33
09-07-2006, 01:33 AM
I am also a teacher. I've been on Rebif for 4 months. I had numbness and tingling/stiffness in arms, face and legs before and pretty much have the same symptoms now. However, a year and a half ago, I had a bad episode (I hadn't been diagnosed yet) where I lost motor coordination, etc. and haven't had anything like that since. It's hard because you just have to trust that the Rebif is working. I like to think that it's keeping me from having new symptoms. My husband and I handle the shots just fine. He does them for me about 1/2 the time. I'm a real needlephobic and I do just fine with the autoinjector. My biggest complaint is the achyness that I experience. However, it doesn't really stop me from doing anything. I can control it pretty well with Ibuprofen. I hope it's going well for you and I hope you're having a good first week back at school!
SHAWN2426
09-07-2006, 11:53 AM
Just Curious, What Are Your Symptoms With The Active Lesion In Your Neck. Does Your Hands Hurt Bad? Please Answer. I Was Told I Have 2 Active Ones In My Neck And Did The I.v. Steroids And It Didnt Help My Hand. Just Wondering What Your Symtoms Are
Shawn
Shawn
Vonstar28
09-07-2006, 01:55 PM
Hi,
I've been on Rebif since early May. My neurologist said it seems to be working since my last MRI showed some shrinkage in one of the many lesions that I have. Rebif is pretty much okay. Just take some ibuprofen before you take your shot. Be sure to take the shot before you go to bed so if you do have any side effects you'll asleep through it.
My experience has been if I don't take a pain reliever before hand, you will feel the flu like symptoms throughout night into the morning. The injections can be a bit painful especially in the thighs, but you have so many areas to choose from. Other than that I would say give it a try. As soon as I was diagnosed I started and that was just in May.
Good Luck and make the decision that's best for you.
I've been on Rebif since early May. My neurologist said it seems to be working since my last MRI showed some shrinkage in one of the many lesions that I have. Rebif is pretty much okay. Just take some ibuprofen before you take your shot. Be sure to take the shot before you go to bed so if you do have any side effects you'll asleep through it.
My experience has been if I don't take a pain reliever before hand, you will feel the flu like symptoms throughout night into the morning. The injections can be a bit painful especially in the thighs, but you have so many areas to choose from. Other than that I would say give it a try. As soon as I was diagnosed I started and that was just in May.
Good Luck and make the decision that's best for you.