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Rebif And Fatigue

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Old 02-28-2010, 04:06 PM #1
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Originally Posted by Sparkledust View Post
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.
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.
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Old 03-01-2010, 04:21 AM #2
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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 ...
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Old 03-01-2010, 12:02 PM #3
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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.

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Old 03-02-2010, 11:15 AM #4
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Originally Posted by SallyC View Post
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.
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.
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Old 03-18-2010, 10:22 AM #5
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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.

????????????????
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Old 03-02-2010, 11:09 AM #6
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Quote:
Originally Posted by pud's friend View Post
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 ...
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.
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