Anyone with GOOD Experiences on Rebif??
- jgkarob
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Re: Anyone with GOOD Experiences on Rebif??
here's one experience that may cheer you up even more. I've been on Rebif since October 2000.
My neurologist reckons it's kept me in RRMS, but it could just be down to good luck.
I was really ill at diagnosis and I've been up and down, physically over the years, but after a few months off in 08/09 (not by choice, but I'd moved countries) I had a big relapse.
I got back on the new formulation of Rebif in 09 and it's working as well as ever.
To put it in context, in the two years prior to diagnosis, I had odd episodes every 6-10 weeks or so and my diagnosis was a bit of a shock.
Since then, I've had only a few relapses and life is pretty good.
But...once you get settled onto a dose, look after yourself.
I keep as fit as possible, working out (aerobics) with hand and ankle weights.
I found that cutting gluten reduced fatigue dramatically and it also halted the dreadful nerve pain.
I take LDN (low dose naltrexone) which helps with symptoms - my bladder is excellent and it was awful before LDN.
Take Vitamin D3 (I take 10,000 iu) each day and also B12 and lots of Omega 3.
Having lived with MS for a good long while now, I'm very grateful that a drug exists that has cut relapses. I can't say for sure 'if I hadn't been on it I'd have lost my legs/mobility', but I do think it has worked well. Relapses can be scary and my last one in 09 came out of the blue and I spent 2 weeks in hospital and it took a long time to get over it. I'm still having some residual symptoms when I'm tired.
If you want to know anything more, do ask.
very best wishes,
jg
Re: Anyone with GOOD Experiences on Rebif??
I have been on 22 using the rebismart for one year now, only slight high temperature side effect for a few weeks, no relapses since. No problems at all.
Rebif nurse/rep very friendly and helpful.
I'm also taking suplements of Vit D3, Omega 3,6,9, and vit B complex and Curcumin 2000mg
I think all of these have been making my existing symptoms much better.
Good Luck Honey!!
- NiftyBunny
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Re: Anyone with GOOD Experiences on Rebif??
Re: Anyone with GOOD Experiences on Rebif??
Your body will likely adjust to the 44mcg as well, though it may take time. I remember having chills and body aches when I was titrated up from the 22mcg. I kept Tylenol by my bedside just in case. Even now, I still feel a bit out of it the day after an injection sometimes. A friend of mine with MS gave me Spirulina capsules one time which did seem to help, though I can't recall the dosage off the top of my head. Hang in there!
jgkarob- Thanks for sharing your experiences! It's an inspiration to hear that you're doing so well.
Re: Anyone with GOOD Experiences on Rebif??
What are you taking to counter the side effects? Have you tried ibuprofen? I was on Avonex for 10 years and I seemed to do best with ibuprofen, 400 mg at the time of my shot and another 400 every 5 to 6 hours after that as needed. Shortly before I stopped, I could get by with just 400 mg about 2 hours after my shot and then 200 mg the next day to help take the edge off. However, if I allowed too much time to elapse between my shot and the ibuprofen, then I started to get particularly bad muscle spasms. Avonex is an intramuscular injection as opposed to the subcutaneous injection of Rebif, thus, the kinetics of absorption and when one starts to feel the side effects are likely different (there will also be differences from one person to the next).NiftyBunny wrote:Update: Well I've been on the Rebif for over a month now... lastnight was my third injection of the full 44mcg dosage. On post injection days like today, it definitely knocks me on my butt. Alot of head and body aches and slight fever. But the 22mcg did the same thing (though less) and by the end of the 2 weeks on the 22 it was already alot better side effect wise... so I'm hoping the 44 side effects will calm down too. I get alot of stinging during injection now, but I'm trying different things to try to ease that a bit. So far its acting as I expected it to... so hopefully it continues with that and calms down eventually side effect wise. My MS symptoms have remained about the same... but its early.
NHE
- NiftyBunny
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Re: Anyone with GOOD Experiences on Rebif??
Re: Anyone with GOOD Experiences on Rebif??
- NiftyBunny
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Re: Anyone with GOOD Experiences on Rebif??
Re: Anyone with GOOD Experiences on Rebif??
Re: Anyone with GOOD Experiences on Rebif??
Most excellent injection advice! I always thought the rear was a place to avoid, but if necessary, I feel more comfortable adding it to my repertoire. I can't do my thighs either and it's good to have an alternate site. I will also try the exhale as injected. I'll keep you posted on how that works out.
- NiftyBunny
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Re: Anyone with GOOD Experiences on Rebif??
Re: Anyone with GOOD Experiences on Rebif??
Re: Anyone with GOOD Experiences on Rebif??
MS lifelines nurses told me take them out of fridge on mon and that you can have them unrefrigerated up to 30 days, just don't exceed room temp of 75, which is no prb since its usually in 50's in the house, I feel so awful for ppl who have had bad experiences w/rebif
Frankly I was so shocked i had none, as i usually get side effects to everything
But 0 on Rebif and Epitol (nerve med)
just pls, avoid Lyrica (nerve med) it made me suicidal - very
Re: Anyone with GOOD Experiences on Rebif??
I have read of people putting the syringes under their arm for a minute or two to warm them up prior to injection. This might help.Maledicte wrote:I am lucky in the fact I've had 0 side effects. The injections just HURT like crazy since I went to 44's
MS lifelines nurses told me take them out of fridge on mon and that you can have them unrefrigerated up to 30 days, just don't exceed room temp of 75, which is no prb since its usually in 50's in the house, I feel so awful for ppl who have had bad experiences w/rebif
Frankly I was so shocked i had none, as i usually get side effects to everything
NHE
Re: Anyone with GOOD Experiences on Rebif??
I haven't heard of that, the nurses told me hold in my hand like 5 mins before, but keeping it out a week or so stops the cold part, it's the going to 44's the nurses say is the prb for most ppl, its a lot of meds going in, it just hurts, mostly in the leg, which they said is the most painful area for mostNHE wrote:I have read of people putting the syringes under their arm for a minute or two to warm them up prior to injection. This might help.Maledicte wrote:I am lucky in the fact I've had 0 side effects. The injections just HURT like crazy since I went to 44's
MS lifelines nurses told me take them out of fridge on mon and that you can have them unrefrigerated up to 30 days, just don't exceed room temp of 75, which is no prb since its usually in 50's in the house, I feel so awful for ppl who have had bad experiences w/rebif
Frankly I was so shocked i had none, as i usually get side effects to everything
NHE
i just cuss to myself and it stops hurting in 5-10 mins
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