Rebif And Fatigue
 

Hi, I've been on Rebif for about 6 weeks and have never felt so exhausted in all my life!
I am on the full dose of 44mgs and normally suffer from chronic fatigue, but now I'm totally wiped out, sitting in a coma, all day, every day!
Has anyone else ever experienced this, and will it wear off?

Hi and welcome to NeuroTalk!

Unfortunately, fatigue seems to be one of the side effects of the Interferons. I was on Beta for a long while before I just couldn't tolerate feeling sicker with it than I did without it.

If fatigue is already an issue for you without the DMD it's probably going to continue to be your main sx.

Have you tried one of the meds they have for fatigue? I used Provigil and it worked very well for me. I don't take it any longer because I don't take any of the Interferons but it was very effective for me when I took it.

Hope you feel better soon! :hug:

Thanks Kitty,

I actually do take Provigil and it's still really bad!
I never knew fatigue was a recognised side effect of the Inteferons. .:eek:
I was hoping the symptoms would calm down once my body adapted to the new drug.
I can't go on like this if it's not going to get better, I have no life at all!
Does Tsybari have the same problems?
Sorry for moaning (but I truly feel desperate) - thank you for your kind reply, I really appreciate it!

I had fatigue along with the typical flu like symptoms. I felt cruddy 24/7 and finally just could not live like that. I take LDN exclusively now and couldn't be happier. It has really given me my life back.

I noticed that you take LDN along with the Rebif. I never took both LDN and an Interferon at the same time. Maybe just try the LDN for a while and see how you feel? Does your Neuro prescribe the LDN for you? What strength do you take? I take 4.5 mg per day.

Hi Sparkledust!

Sorry to hear you're having this issue with the Rebif. :hug::hug: I had it too, and it took a while to learn to work around it. I took a lot more breaks when I did stuff. When I was on Copax, it wasn't as bad.

I had to switch my Rebif shots to the morning because - even with premedication - sometimes the flu like symptoms kept me from sleeping well at night. That helped a little. It might be something to try, but I'm not sure what else is in your schedule and whether or not that would work out for you.

Hang in there! :hug::hug:

no advice just hugs :hug:

Oh god yes!...... After I started I got so tired....even more tired than before the shot. It also made me weak as hell... Had to have some help for a few days was just so sick and tired.... I know how it feels and hang in there.....

I'm quite tired now, but not anywhere near where I was... Getting help with my stress has helped a lot too. A ton actually.

((huggs)))

Hi Kitty,
LDN was working really well for me before I started Rebif.
I take 4.5mgs per day too, I had to get it on a private prescription as Neuro wouldn't prescribe it.
I phoned Rebif support today and they confirmed fatigue was a recognised side effect.
The woman suggested I contact Neuro or MS nurse who might suggest lowering Rebif dose to 22mgs.
She also said Rebif fatigue might never abate.
My Neuro previously said that if Rebif wasn't good for me I might be considered for Tsybari.

Thank you Finlady, for your kind reply! :)

Thank you Dejibo, much appreciated! :)

Hi Eric,

glad to hear things have got better for you, how long did you have to wait to see an improvement?

My Neuro wouldn't prescribe it either. So I get it from a different doctor. I never took it along with the Interferons. Since the Beta I was taking only had a 30% chance of possibly helping with progression....and it was making me feel so miserable....I just decided it wasn't worth the gamble (or the cost). I've been taking LDN by itself now for over a year and haven't looked back. It's been the best thing I've ever done.

Been on Beta coming up a year now and the aches and flu have only got slightly better in the last couple of months. But the 'hangover' feeling and dizzyness the day after is still going strong.
Fatigued up the eyeballs.
I talked to an MS nurse today and (I'm sure she didn't mean it to sound the way it did) she said "You're not managing your side effects are you?".

It isn't that I'm not managing them, it's that they can't be managed and maybe it's not going to change anytime soon, I replied. :(

Edit; Welcome Sparkles ... :)

My only question is....If you were doing well on just the LDN, why did you add Rebif??

The Interferons are not recommended with LDN, as there may be counteraction? They say Copaxone is OK.

:hug:

Hi, thanks for the welcome!
I phoned Rebif support yesterday and they told me Fatigue is a recognised symptom. She also said the fatigue could last 3 months, 6, or forever!
I also spoke to my MS nurse who said extra fatigue was unusual!
She urged me to stay on the full dose for another week, and if I still felt so bad she would reduce the dose to 22mgs.

Hi Sally,
I had been on a waiting list for Rebif when I started LDN.
I also frequent another MS board in the UK, and many people there have been taking Rebif and LDN with great success.
As for the price of the Rebif, because of the NHS in the UK, I am fortunate enough not to have to pay for any of my many prescriptions.
I now want to come off Rebif, but thought I should give it a chance first.

My Neuro at a MS comprehensive clinic....said that you could take LDN with any of the CRAB's. I said, 'I thought only copaxone'...he said no that is not true.

????????????????

I was on Beta for a year and every day I thought it would get better. Every day it didn't. So I ditched it.

I'm starting to believe that i've been suffering from side effects for the year, rather than MS. I'm ready to move on now... No more naps required for THIS kid. :D