Anyone with GOOD Experiences on Rebif??

[jgkarob]

Hi there,
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

[Loumalone]

Hi Amber,

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]

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.

[Froggie]

NiftyBunny,

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.

[NHE]

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.

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).

NHE

[NiftyBunny]

Yet another update: I have been on the 44mcg for almost 3 weeks now and I am already to the point where I pretty much have no side effects the next day. Today is a post injection day for instance, and other than slight (very slight) achiness in my head and arms, I feel fine... a bit tired.. but that could be because I woke up at 4:30am and couldn't get back to sleep lol. I have found that ibuprofen is most effective to battle the side effects... and of course lots of rest when I'm having a really bad day. The lots of rest isn't always doable since I am a stay at home mom with a 22 month old daughter, but I do what I can lol. Overall, I'd say the rebif side effect wise, is a success. I'm still having issues with it stinging ALOT during the injection (any ideas? I've tried icing the area before hand, and letting the alcohol dry) but other than that, I seem to be doing quite well on it. I am pleasantly surprised... the other day it took me a few hours to even remember that it was a post injection days... thats awesome. I will continue updating you guys... this forum has been so helpful and encouraging to me and I hope it is to others starting the Rebif journey too!

[Froggie]

Are you using the Rebiject or doing the injections manually? I had problems with stinging too using the Rebiject and I think a lot had to do with how fast the medication was going in. I've had fewer issues since my husband started doing them manually, as he's got a lot more control of the flow rate. There are still some places that stinging is more common, but overall, it's been much improved. Glad to hear you're adjusting. Best to you and your little one!

[NiftyBunny]

I use the Rebiject... as both my husband and I are a bit squeamish about needles, I don't think we'll be doing the manual kind lol. I can handle the stinging... it just sucks lol.

[carolsue]

I think my injections are least painful when I can find a good fat layer and when I get the depth just right. As I continue to get more and more athletically fit, this is more difficult to do. The shots almost always hurt, sometimes incredibly so. I use the rebiject on my rear end but have to have it on the shallowest setting. I inject manually into my abdomen so I can go slow, and I don't jab the needle all the way in there either. I can't do my thighs or arms--OUCH! The only other advice I have is to make a really deep exhale as you inject. It's a trick I learned from an acupuncturist...good luck!

[Froggie]

Carolsue,

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]

I found that the rear spots were the most painful for me... the stomach is the second most painful... the legs and arms aren't as bad but lets face it they all hurt a fair bit lol. I'd say my thighs are the least painful in my opinion... arms are almost as bad as stomach. I removed the rear from my injection site rotation because it just hurt too much. I find I can really feel when the drug goes in, and it just stings alot no matter what site I'm using. I will definitely have to try the exhale trick, I will also keep posted as to how that works for me, I usually end up pretty much hyperventilating lol.

[Laika72]

A Very Important thing about ReBif.... The manufacturer of the drug ask that all physicians prescribing ReBif require a psychological consult before a patient starts treatment. This is a serious thing, GET IT DONE. If you have ever had problems with depression(which is good friends with MS), get a psych consult first, please. I live in Seattle, home of MS, I had a Neurologist here that put me on Rebif at my second major and fully diagnosable attack. Problem was, it was also one month after my mother died. According to the Nurses Line on Rebif box, I should have never of been put on the drug while still in a grieving state. My experience with ReBif included flu like symptoms, bizarre vivid dreams, crying for no reason and finally a loaded firearm in my mouth. Luckily, the FedEx lady arrived and I answered the door. That is why I am here today. I am not a suicidal person, even knowing I have MS. Again, the manufacturer is the way I found out that this drug can cause major problems if one suffers from depression, not from my now former Neurologist who skipped the psych consult part. I then went back to my original Neuro who discovered the MS via Optic Neuritis a few years earlier. I told him about the ReBif incident and for the first time in my 38 years of living, a doctor spoke ill of another doctor. So I can not emphasize enough that one meets with a psychologist or psychiatrist before taking this drug. I went from normal MS patient to suicidal, crying basket case in three months. And my life is pretty good, i'm an attractive man, I have a beautiful wife that makes a good living, I don't have to work, we have money; no reason to kill myself but on the ReBif it almost happened. Funny thing was, the FedEx lady that knocked on my door, she was delivering my next supply of ReBif. I am now on Copaxone.

[Maledicte]

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

But 0 on Rebif and Epitol (nerve med)

just pls, avoid Lyrica (nerve med) it made me suicidal - very

[NHE]

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

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.

NHE

[Maledicte]

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

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.

NHE

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 most
i just cuss to myself and it stops hurting in 5-10 mins