quitting Rebif??

A board to discuss the Multiple Sclerosis modifying drug Rebif

quitting Rebif??

Postby nikki9962 » Thu Sep 29, 2005 3:50 pm

Hi Everyone. This is the first post I am making as I just registered. I was diagnosed with MS June 6/05. I had symptoms for a year before I was diagnosed. I had severe tingling in my legs (that started only in 1), severe tremor of my right hand, numbness in my chest only on one side. Because of my age (24 at the time), I am not overweight (ideal weight), and I do not smoke, my GP put my symptoms off as nothing "it will go away" twice... then I ended up going into the after hrs clinic one night as I wanted answers... he said my symtoms were most suggestive of MS... what a shock.. it was less than 2 weeks that I had an appt with a neurologist who got me in for an MRI and sure enough... the symptoms were not all in my head - pardon the pun... anyways I was sent for high dose solumedrol IV treatments for a week - not fun. It got rid of all my symptoms - YEA. then I was told to go on Rebif.. not fond of the idea as I am not fond of needles... I did start Rebif at the end of June this year and all I find it is doing is causing bruising and site pain.. my symptoms were gone completely from the IV steroids - not the REBIF.. I have an appt tomorrow to get off Rebif - so excited. I have never felt better. I really only had 2 attacks since March 2004. I just got married this summer (July - annoying taking Rebif on my honeymoon....oh well) and we are thinking of kids soon. Has anyone else went off Rebif for planned pregnancy? please email.
Thanks
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Re: quitting Rebif??

Postby NHE » Fri Sep 30, 2005 6:04 am

nikki9962 wrote:I did start Rebif at the end of June this year and all I find it is doing is causing bruising and site pain.. my symptoms were gone completely from the IV steroids - not the REBIF

There are other options. Have you considered Avonex? The "flu like" side effects are about the same but there are minimal injection site reactions. On rare occasions I might get a small nickel sized bruise. This might occur about once every 4-5 months or so. The Ifn-B dosage with Avonex is lower than it is with Rebif but then there is also a greater absorbtion efficiency with an intramuscular injection (Avonex) as opposed to a subcutaneous injection (Rebif & Betaseron), i.e., roughly 80% and 40% respectively.

On another note, the key with therapy is to slow the progression of disability. A problem with MS is that there are ongoing subclinical attacks. These are attacks that can be seen on MRI but do not produce symptoms. It's believed that over time the subclinical attacks will cause enough damage such that they produce new symptoms. A while back there was a link posted to a presentation which discussed this very nicely. However, I can't find it right now in my bookmarks and the closest thing I can find in that subject area is this paper.

Here's a bit of history on my own situation. I had my first MS like symptom in 1991 and did not have any symptoms for another 8 years. Had I been correctly diagnosed at that earlier time, I feel quite strongly that some simple changes may have greatly postponed the problems that I now have to deal with on a daily basis (heat sensitivity, neuropathic pain in my foot and leg, vision problems, fatigue, and loss of balance). The changes I would have like to have made are the one's that I'm following now which I use to complement the Avonex I've been taking for the last 5 years. I would suggest reading through many of the excellent posts in the Diet and Natural Approach forums to get an idea of what other folks have tried. So far, I've eliminated a few proinflammatory things such as garlic and partially hydrogenated fats. I'm also taking cod liver oil, omega-3 fish oil, ground flax seed, r-lipoic acid (an antioxidant), vitamins E and C, and green tea which all provide some anti-inflammatory benefit. I'm also looking into n-acetyl cysteine and turmeric though I'm still in my research phase on these two.

I just got married this summer (July - annoying taking Rebif on my honeymoon....oh well) and we are thinking of kids soon. Has anyone else went off Rebif for planned pregnancy?

It's best to stop any Ifn-B use during pregnancy. There was a recent post linking to an article which discussed complications which can arise from it's continued use during pregnancy.

Best wishes, NHE
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Postby bebe » Sat Oct 08, 2005 5:56 pm

Nikki-

The DMD's are not going to make you feel better. On the contrary, most people dont feel so great when first starting. he drugs will slow down relapses and progession of disability. The first three months are the hardest, especially when it comes to flu-like symptoms and injection site reactions, but it will taper off. Finally, a comment regarding Rebif vs. Avonex- in the head-to-head trial between the two drugs, the flu-like symptoms were less with Rebif. The injection site reactions are worse with Rebif, but you are injecting right under the skin verses down in the muscle. Obviously, you can see reactions down in the muscle.

Good luck...stick with it if you can....keep the goal in mind.

Be
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The only sign that it is working is that you have no relapse

Postby triara » Sun Oct 01, 2006 6:21 am

You wont feel Rebif doing anything that you can pinpoint as positive, though you might notice the soreness after the injection, or other side effects.

Steroids only temporarily cool down an exacerbation, they do not prevent them long term. Exacerbations pass in their own sweet time without them.

Rebif helps prevent new exacerbations/reduce severity. When it works, You don't notice anything except no exacerbations. Going off of it because you feel well may not have the lpng term results you wish. MS does not go away, it just lays in wait.

Having lost a job, and my working ability, because of severe exacerbations entailing 22 days in the hospital, AND experiencing the financial and paperwork mess involved. I will put up with the very minor owies and stick it out. I don't want to go thru this again. None of the MS therapies are perfect, but they are better than nothing. Good Luck
Robin
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