Neuro is reducing my Rebif to 22mcg

A board to discuss the Multiple Sclerosis modifying drug Rebif

Neuro is reducing my Rebif to 22mcg

Postby catfreak » Tue Aug 12, 2008 5:58 pm

Went back to the DR for my 3 month visit after starting Rebif. Told him all my new MS symptoms and about my fever and sweating. He decided to reduce my rebif shot to 22 mcg for the next 30 days to see if anything changes.

He put me on Mobic prior to my shots for the fever, a round of Prednisone for my other MS symptoms (I don't do well on steroids) and Provigil for my extreme fatigue.

My insurance refuses to pay for the Provigil.

Has anyone else had their Rebif lowered and how did it turn out?

Thanks for listening,'

CF
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Postby oreo » Wed Aug 13, 2008 11:36 am

Yes, I've been on 22 for what seems like forever. When I started on Rebif I went the usual route, ramping up to full dose (44) during the usual length titration period.

However, after I stared Rebif, I also got myself referred to an MS clinic for continuing care. The Neuro there felt that my lesion load showing on MRI as well as my clinical symptoms put me in the 'mild' MS as opposed to 'severe' MS category. In addition he felt that some of the minor complaints I had could be Rebif related and not MS related. On my second visit, six months after the first, he cut me bacck to 22 and I have been there ever since. And doing very well I might add.
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Re: Neuro is reducing my Rebif to 22mcg

Postby Leannedale3 » Fri Feb 06, 2009 10:58 am

catfreak wrote:Went back to the DR for my 3 month visit after starting Rebif. Told him all my new MS symptoms and about my fever and sweating. He decided to reduce my rebif shot to 22 mcg for the next 30 days to see if anything changes.

He put me on Mobic prior to my shots for the fever, a round of Prednisone for my other MS symptoms (I don't do well on steroids) and Provigil for my extreme fatigue.

My insurance refuses to pay for the Provigil.

Has anyone else had their Rebif lowered and how did it turn out?

Thanks for listening,'

CF

My rebif was just reduced from 44 to 22 as well as I was so sick from the 44 :-( I just had my second injection of the lower dose 22 last night and I still have the side effects but maybe it takes a bit for the medication to even itself out. Hope things get better for you and me ;-)
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Postby catfreak » Fri Feb 06, 2009 8:29 pm

Leanne,

After 4 months back on the 22mcg shots my Dr raised them to 33mcg for a month and then up to the 44mcg, which I have been at for a month. I still have a fever and feel bad but I am doing OK so far at the 44mcg. I go back to the Dr next month to see if I stay at 44mcg or go back down.

I finally got approval for the Provigil and it helps with fatigue somewhat.

I will keep you posted when I go back to the Dr.

CF
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Postby Leannedale3 » Sun Feb 08, 2009 4:56 pm

catfreak wrote:Leanne,

After 4 months back on the 22mcg shots my Dr raised them to 33mcg for a month and then up to the 44mcg, which I have been at for a month. I still have a fever and feel bad but I am doing OK so far at the 44mcg. I go back to the Dr next month to see if I stay at 44mcg or go back down.

I finally got approval for the Provigil and it helps with fatigue somewhat.

I will keep you posted when I go back to the Dr.

CF


CF,
thanks for your reply, I am hoping to be able to get back to the full strength as I know it is best to be there but with the flu bugs, colds and surgery for kidney stone removal I have had lately on top of the rebif side effects my nurse felt it best to give my poor body a rest. Yes, please keep me posted on what your doc has to say and also if your side effects ease up some more. Good luck and thanks, Leanne

edited to say: I spoke to my MS nurse today and she told me that I will not be going back up to the full strength AND that my blood work wasn't good so I need blood tests every 2 weeks now to keep an eye on things. I for now, will stay on the 22 strength to see how things go.
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Postby catfreak » Wed Feb 25, 2009 6:59 pm

Leanne,

I am sorry to hear you are having problems. I can't imagine the Dr letting you stay on the Rebif with blood issues, but they are the the ones who tell us what they think is best.

I go back March 8th. I'm sure it will take a few weeks for blood test to come back on mine.

I would gladly go back down to 22mg. The 44mg dose makes me feel really crappy.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Leannedale3 » Thu Feb 26, 2009 5:09 pm

catfreak,
I actually just got a call from my MS nurse today and my liver counts have almost tripled so my doc said to take me off the drug right away :-( I am actually kinda scared because I am in the middle of a relapse right now being on the drug and my fear is if I'm not on any drug, my relapses could be much worse...I need to go for more blood work in 3 weeks and then see them the following week to decide what to do. My nurse says that she doesn't think that he'll let me go back on it and that I may need to try Copaxone :-((( Or, try an experimental drug, so we'll see.
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Postby CureOrBust » Thu Feb 26, 2009 6:09 pm

Leannedale3 wrote:I am actually kinda scared because I am in the middle of a relapse right now being on the drug and my fear is if I'm not on any drug, my relapses could be much worse...
I would not be concerned about that aspect. From my understanding, Rebif only reduces the number of relapses, and does not affect the severity of the relapse. The stress of it may be more of an issue, if its a trigger for you. I personally had my worst relapse while on Rebif, and hence I stopped taking it. I am now on Statins, and have never looked back. This could be a great opportunity to get something better.

Leannedale3 wrote:My nurse says that she doesn't think that he'll let me go back on it and that I may need to try Copaxone :-((( Or, try an experimental drug, so we'll see.
If it wasn't for the daily injections, Copaxone would be my personal choice. TRY other things, you may be surprised what works for you. Statins, LDN, Mino etc etc
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Postby catfreak » Thu Feb 26, 2009 7:21 pm

Leanne,

If your liver enzymes are high then he was right to stop the Rebif. Don't worry, they will find a med that is right for you.

I had my worst relapse last year after starting Rebif. I am personally waiting for something other than Rebif. (A PILL)

Hang in there and keep me posted.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Leannedale3 » Thu Feb 26, 2009 7:45 pm

CureOrBust wrote:
Leannedale3 wrote:I am actually kinda scared because I am in the middle of a relapse right now being on the drug and my fear is if I'm not on any drug, my relapses could be much worse...
I would not be concerned about that aspect. From my understanding, Rebif only reduces the number of relapses, and does not affect the severity of the relapse. The stress of it may be more of an issue, if its a trigger for you. I personally had my worst relapse while on Rebif, and hence I stopped taking it. I am now on Statins, and have never looked back. This could be a great opportunity to get something better.

Leannedale3 wrote:My nurse says that she doesn't think that he'll let me go back on it and that I may need to try Copaxone :-((( Or, try an experimental drug, so we'll see.
If it wasn't for the daily injections, Copaxone would be my personal choice. TRY other things, you may be surprised what works for you. Statins, LDN, Mino etc etc


Thank-you for your post, it makes me feel better for sure :-)
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