Rebif now side effects?

[sulgrifjewls]

Hello,
This is my 7th week on rebif 3rd week on 44mg.
Yesterday I thought I got hit by a bus or train or something while I was out for a beautiful long run.
I had not had any of the usual side effects except for inability to sleep and a big headache in the pior 7 weeks.
Is it normal for side effects to start at anytime? I was down and out for 24 hours it was bad. I do premedicate 1 hour before shot. I can not live with that as a side effect.
Thanks
Jill

[Karenkay]

My experience with Rebif was that as the drug built up in my system, the more difficult it was to cope with side effects. Lethargic, exhausted, painfully sore injection sites and headaches. Dr switched me over to Copoxane and the side effects were headaches and daily migraines. I am of all DMD's and refuse to try them again.

[jessiesmom]

My Experience with Rebif side effects

Hi Jill,

I have been taking 44mcg Rebif for almost 7 years. I have not had a relapse since my initial diagnosis during a bout of Optic Neuritis. I get MRIs yearly and they have shown no new lesions for the last several years. This would certainly seems to be a success for this drug.

For the most part I do not have any significant side effects from the Rebif. I do the injections right before bedtime and take 2 Aleve. Occasionally I do get the "chills" after my injection which might last a couple of hours. They are then completely gone and I am fine the following morning. Yes, seven years later and I do still get a minor side effect sometimes.

About 6 weeks ago I got what was probably the single worst bout of "chills" I have ever gotten. My teeth were chattering and my whole body was shaking. Oh, and I also vomited. My husband had to bring me an extra blanket. It was gone almost as soon as it started and hasn't happened since. Considering how well the drug has seemingly worked for me, I can tolerate these inconveniences.

Only you can determine if the side effects of Rebif are worth it to you and what you are able to tolerate. You have to remember that there are medication choices out there. Just because one does not work out doesn't mean that another won't be a success.

I hope that hearing about my particular experiences has been of some help to you. Good luck and keep us posted.

[sulgrifjewls]

Thanks for the information.
I was on copaxone for ~ 2years but it wasn't working. I am JCV+ so I am not ready to try tysabri and I am an active triathlete so my heart rate is low so doctor doesn't want to try Gilenya.
So I am left with the interferons and my doctor wanted me to try Rebif.
When I injected at night I couldn't sleep so I went to mornings and it seemed to help with the sleeping.
Tommorrow is my first injection since that reaction and I am worried that it will happen again. I have something that I should attend in the afternoon.
Thanks for the support.
Jill

[Brandyml]

Strange side effects

Thanks for the information.
I was on copaxone for ~ 2years but it wasn't working. I am JCV+ so I am not ready to try tysabri and I am an active triathlete so my heart rate is low so doctor doesn't want to try Gilenya.
So I am left with the interferons and my doctor wanted me to try Rebif.
When I injected at night I couldn't sleep so I went to mornings and it seemed to help with the sleeping.
Tommorrow is my first injection since that reaction and I am worried that it will happen again. I have something that I should attend in the afternoon.
Thanks for the support.
Jill

I was diagnosed with MS recently and was started on Rebif right away. I didn't have any problems with the injections (besides not really liking to use the rebiject, just don't care for needles if I have to do it myself is all), I premedicated with Advil and didn't have a headache, problems sleeping, chills or a fever.

Before I was titrated up to the full dose my lymph nodes swelled up on the back of my neck and my head, and three days later I had a fever a bad headache and neck ache which then triggered my MS (balance problems, vision problems). I had three blood tests done over 6 days and the third blood test showed that my white blood cell count dropped from a normal level to half was it was, my liver enzymes were 154 (I guess that is about 3x what the normal is), and all around I was feeling crappy.

My PCP and the ER doctors couldn't figure out why I was sick or what I had just that I had something viral. I didn't have a cough, sore throat, upset stomach or anything. Finally after a week and a half of almost constant fever the ER called my neurologist asking what to do. My Neuro looked at the blood work and figured that my body couldn't handle the Rebif. When she told me to just stop the Rebif I was like "That's what is making me sick and no one else could figure it out?". But I guess that is why she is an MS specialist, she knows the medications to treat it!

At one point they suspected I had spinal meningitis! So now I have been off the Rebif for a week and my fever is gone, balance is back but now I am left with really back jaw pain and ear pain. I have been out from work and school for 2 weeks but I am hoping to go back by the end of the week. But the point is that you don't know until you try and the only thing you can do is trial and error until you find what works. I still have to talk to my doctor about trying a different medication since she thinks that I can't handle interferon's.

[ggnutsc]

I was on Rebif for about 9 months. If it weren't for a relapse in Nov/Dec, and an MRI that showed new lesions, I would probably still be on it.

I can say with complete honesty, that I had no issues giving myself a shot. What did bother me was not knowing from one injection to the next if I would feel like crap, or have a fever, or be even dizzier than normal.

In retrospect I'm glad not to be on it right now as I wait to get on Tysabri. In the 2-3 weeks since I've been off Rebif, I can tell a difference (in a good way). It's hard to tell what symptoms are caused by the MS and which ones are from the medicine until you are no longer taking the meds.

I would encourage anyone taking Rebif to have both Ibuprofen and Acetaminophen on hand. There were times when I would wake myself up in the night shaking/chilling. Toward the end the IB wouldn't help the fever, only the Acetaminophen would break it. I also started injecting at about 4-5pm instead of during the evening, because it seemed I had less problems getting to sleep, and I felt a little better in the morning, when I got up at 5am to go to work.

I'm sure that I could have coped with the side effects if Rebif had worked for me, but that wasn't the case. I learned in my short, fast learning curve, Rebif is considered a pretty good med, and if it works good for you; great!! Just don't be afraid to try things to minimize the side effects interfering with your life. I was starting to get a handle on it toward the end.

[anniedelano]

Rebif side effects + diet

Dear All, thank you so much for sharing your experiences. I have been on Rebif for 2.5 years. the worst sideeffects I have had are site injection tenderness and recently migraines the day after injection. I don't get the headaches all the time. I used to feel flu like symptoms and extreme fatigue almost all the time but especially the day after injections. A HUGE improvement in my qulaity of life and how I feel is that I am working with a nutritionist.

I am on a gluten free diet; eat no red meat; a little fish+ organic chicken + tons of fresh fruit + vegetables. I also have pretty bad Osteoarthritis on the right side of my body and I have cut out all dairy except a tiny bit with my morning coffee. Interesting thing is that if you google "dairy + osteoarthritis" it says dairy exacerbates it.

Did my drs. every say anything about diet? No! My internist did say when asked that he heard a gluten free diet seems to help some people. he also said there was a book about the MS diet. No-one ever tole me that a change in my diet could give me more energy and mental alertness. It is absolutely amazing.

Since MS is an immune deficiency based disease people with MS are often very susceptible to dietary sensitivities. I also am fatally allergic to peanuts _ certain legumes. Allergies are an immune deficiency based challenge.

So what is the take-away from my musings? I wish I had changed my diet earlier. Eating this way is a pain -in-the-neck sometimes but the pay-off is how much better I feel. My next challenge is curbing the headaches the day after an injection. I have to take an injection tonight. I do medicate and warm the area first. Fingers + toes crossed - no headache tomorrow morning

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[lukeduke]

I took Rebif for over five years. From March 2007 until December 2012. I quit pre-medicating once because I wasn't having the headaches from it.

Then one night they hit hard. I did not sleep at all that night. Fever, chills, and cold sweats were what happened to me that night.

I would still be on Rebif if it had not stopped working for me. Now I'm on Tysabri. I like it alright and I am improving. I did not realize how bad I had gotten. I am going to talk to the neuro about what she thinks of Tecfidera. I really hate the needles.

[Kell77]

I was on rebif for 6 yrs then stopped for 5 yrs to have kids.
My ms was a lot more stable on the rebif & lots of new lesions have appeared since being off it.
I'm due to re commence rebif this Friday with the new rebismart device, has anyone used this?

I hated the Rebiject it fired it in & I got site reactions. Apart from headache/flu like symptoms which panadol controlled my only side effect was site reactions. I dislike injecting my legs as it hurts & bruises.
I'm a little nervous being back on needles after a long break (although I did ivf so had lots of needles & blood tests lol but it was for a happy outcome).

I'm worried about feeling crappy on rebif with 2 young kids to run around after & get up to at night.
But I can't risk my ms getting worse & my latest MRI scares me ((

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[bamabelle]

kell77

My hubs uses the Rebidose. It is a pre-filled injection that has the auto-injector built in to each individual dose. The entire device is disposable. Hope this helps!

[martinapickett]

Flu like symptoms, a headache over one temple and depression.

I just feel so much better when I do not take it. I took it since diagnosed 1/2002. I came off Rebif last May.

Neuro asked me about trial ...on a pill. decided to try it. Have not started yet.