A few have replied. Please share your experience with REBIF!

[waysiek]

Waysiek......your comment really helped because as the date gets closer to start the more nervous I'm getting. I just want to begin. Did you use the autoinjector? If so was it difficult? It's kind of funny you're the first one I've read that does it at 5pm. Most people say they do it right before bed to sleep through the symptoms. In my head I was thinking if you have flu like symptoms how could you sleep through them. I have had a sleep disorder for 20 years and yes, sometimes the meds work and sometimes they don't. Hmmmmmm.........I will have to think this through. Did you lose any hair? Did you vomit? I know alot of questions but every bit helps. I have a hyper thyroid under control with meds but lost alot of hair. Looking forward to your response....
Have a great day!
Susie Q

I tried the autoinjector once and it startled me so much that I jerked, the injector jumped off my leg and the medicine ran down my leg. I like having the control of doing the injection myself. the medicine does sting a little as it goes into the leg, but I inject to a very slow count of 30 and it helps. also hold the syringe needle side up as you pull off the cap so that the medicine does not get on the needle. keep the needle facing up until you are ready to inject. the training nurse can give you more hints also.

I also have a sleep disorder and if I took it before bed, I could not sleep because of the side effects. the side effects are not as noticeable when you are moving around and keeping busy. my shot days were tues, thurs and sunday. even with 18 years of interferon injections (I tried Betaseron and Avonex first and liked Rebif much better), I still needed those two doses of Tylenol to prevent the side effects of headaches and body aches. the body does adjust and the side effects lessen, but given that my MRIs were stable for 12 years on the Rebif, the side effects were worth it. I did not ever vomit or have stomach issues.

I have had hair shedding for 30 years, but I did not notice any difference on the Rebif. I take 7500 mcg of Biotin daily (Sundown brand is very cheap) plus I eat a high protein diet, so that helps with the hair. also, having a shorter haircut helps because the scalp isn't weighted down by length.

you fear is totally normal. I thought I would go nuts deciding what to do when I was first diagnosed. you never know if you will do well unless you try. look it as you are being very proactive and taking action as opposed to doing nothing. if it doesn't work, there are other things to try, but give it a reasonable time to see if it works and you can tolerate it. best of luck and blessings to you.

[Diamond57]

Waysiek

Thank you

[brianb]

How was it?

I'm guessing not nearly as traumatic as you were thinking

I hope you can stay on Rebif, there are certainly some good results with it as you can see (not to say that some others are not great too)

[Diamond57]

This Saturday

Hey Brian....

I don't start until Saturday. There was a screw-up with the nurse. And the big day is Sat. YES........I will definately know. The meds arrived today. I'm ready to stab and jab. LOL!!!! Gotta have some humor with it. Thank you for asking and you'll be hearing from Diamond girl!!!
So nice to have caring people....

Have a great weekend
My best..
Susie Q

[Diamond57]

Went Wonderful!

Hi Everyone!

Saturday was my first injection with the auto injector and I found it to be a piece of cake. My friend Rick couldn't make it on account his son was sick, so my bestie friend and former boss was hear for support and to take notes as Marco recommended. The nurse spent 2 1/2 hours educating about the disease and then the SHOT. It only too me 4 practices. Seriously, it didn't hurt and the click at the end did not startle me a bit. I hydrated well, took my tylenol and was waiting to see what would happen. I did get a bit nausiated and very slight headache that tylenol took care of.

I hope this is a good start to beat the Monster. If this is how I feel when I titrate up I will be soooo greatful. BrianB.......you were right! By George, I hope I got it. Thanks to all of you for giving me the confidence and tid-bits about how to approach this. I hope someday when I'm more experienced I'll be able to help, guide and give some advice when they begin their journey.

Love to all of you......
Susie Q


** 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. **

[moz205]

I have been on Rebif for two years. I get the usual flu like symptoms which are controlled pretty well with ibuprofen or similar.

My new symptom is not on the night of injection but the following night I get the flu symptoms. Really don't want to take more ibuprofen on the following night.

Anyone dealing with this?

[Diamond57]

Moz205

Hi!

Last nite was the first night I titrated to 22mcg and from 2:45-5:30 I was up shaking and shivering so hard I literally could not get out of bed. Headache and nausesa with a 100.7 fever which is down to 99.7 right now. I wear a retainer for my teeth and thought all my teeth were going to break because the the shivering so hard my hands could not do it. I actually go a bit scared. I feel kinda poopy today but usually the day after I'm fine. Just had to share that with you.

We need our rest and hope we all get it for our bodies.
MyBest.

[brianb]

That sounds par for the course on some nights for me, maybe a few times per year I will wake up with cold sweats shivering so it gets better but doesn't go away completely unfortunately.

Sleeping through it is the best option if at all possible. benedryl is a great sleep aide for these nights if you don't take it often.