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**ianzki23** · 08-04-2011, 02:03 AM

Hi

same here i do have a questions about it also

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**Krysalus** · 08-04-2011, 04:29 PM

fevers and those horrible red marks!

Hi

I had some very bad reactions when I first started Rebif. The aches, fevers, etc... I got them all. High fevers. It was miserable. So - my dr put me back down to the 22 for another month and then back up again. It helped. And it did get better as time went on.

I took Motrin an hour before shots and I did them at night so I would hopefully sleep through the side effects which also helped.

Hopefully you are feeling better soon and the side effects lessen quickly!

**Kimba22** · 08-05-2011, 03:53 AM

I was a major fluke when it came to the fevers ... none when I switched over from Avonex and was on it 2 1/2 years. Then whammo ... up to 106 F that landed me in the hospital. But being a fluke seems to be my trademark

.

Your body is still adjusting to the med, so hang in there. I remember going through times I had no fevers, then getting some when I was on Avonex. After 6 or 7 months, it happened rarely. Keep taking your Aleve and I hope things improve for you soon.

Wishing the best,

**Greatdanelover** · 08-05-2011, 09:37 AM

I have been on Rebif for about 5 months now and I get a high temp. about every other week, it seems like. My temp. never last very long though only about a day. So I guess I am pretty lucky.

So sorry you are having this reaction to the shot too. Hope it gets better soon and any symptoms you get don't last to long.... Or better yet you don't get anymore

**sportsfan** · 08-05-2011, 05:47 PM

The first year on Rebif is a crap shoot and everyone has different reactions to it. Some people have no reactions while others get the full load. I started Rebif over 6 years ago and had every reaction you could probably have headaches, body aches, fevers, emotional mood swings you name it I had it. But I hung with it and I'm grateful I did, during that time I've had no relapses and no new lesions on my MRI's.

Taking the shot out of the frig to get it to room temp is supposed to help with the sting of the injection, I always do. And in the beginning I always took my shot before bed like someone suggested to sleep off any reaction I might get. Aleve has always been my OTC med of choice it seems to work the best for me and lasts the longest with any reactions I might have. No one has mentioned the lovely red spots, yes I still get them, nothing you can do do about them I guess.

Hopefully your side effects will only be temporary and you'll be able to hang in there because I really believe it can be helpful.

**nyblondie** · 08-05-2011, 09:20 PM

to sportsfan

6 years and you still get the red spots?

I just switched from Avonex to Rebif 2 months ago. Have no side effects like I did with the Avonex, except those red spots. It's fine until 2 days after the injection than they hurt! One good thing is that even if I mismark my log, I always know exactly where I've injected!

**Sunshine MacGee** · 08-06-2011, 06:42 AM

I'm not going to cry, but

I was just recently diagnosed with MS.

My doctor prescribed Rebif and the nurse is coming by in a few days to show me how to use it.

I was skeptical before about taking medication but now even more so.

I might have a hard time with my current symptoms sometimes, but it sounds like, they'll be worse/different if I take the Rebif. Plus, my current symptoms arent really that bad.

I sometimes take alleve if I know I will be out and about, but I don't take that regularly either because it seems to dry out my hair. (I am vain.)

so, anyway, I think that I have decided not to take the Rebif now.

**sportsfan** · 08-06-2011, 01:46 PM

Originally posted by Sunshine MacGee View Post

I was just recently diagnosed with MS.

My doctor prescribed Rebif and the nurse is coming by in a few days to show me how to use it.

I was skeptical before about taking medication but now even more so.

I might have a hard time with my current symptoms sometimes, but it sounds like, they'll be worse/different if I take the Rebif. Plus, my current symptoms arent really that bad.

I sometimes take alleve if I know I will be out and about, but I don't take that regularly either because it seems to dry out my hair. (I am vain.)

so, anyway, I think that I have decided not to take the Rebif now.

Why? Taking Rebif has never stopped me from doing anything I ever wanted to do, not one thing, but my MS has. I truly believe that had I not gotten on a therapy early on I wouldn't being doing the things I'm still doing today. Your symptoms may not be that bad now but are willing to take the chance and not give it a try to see what will happen down the road. It does have side effects but they are manageable and in time they go away, it really is a matter of letting your body get used to the med.

An MS dx is not what anyone wants to hear, it's devastating I know but it's not the end of the world either and I for one will do whatever I have to to live my life as normal as I possibly can. If that means having to take shots 3 times a week of a med that helps to slow the progression I'll do it, it's better than the alternative. I plan to fight this disease as long as I can and live life to it's fullest.

**nyblondie** · 08-06-2011, 09:35 PM

Originally posted by sportsfan View Post

Why? Taking Rebif has never stopped me from doing anything I ever wanted to do, not one thing, but my MS has. I truly believe that had I not gotten on a therapy early on I wouldn't being doing the things I'm still doing today. Your symptoms may not be that bad now but are willing to take the chance and not give it a try to see what will happen down the road. It does have side effects but they are manageable and in time they go away, it really is a matter of letting your body get used to the med.

An MS dx is not what anyone wants to hear, it's devastating I know but it's not the end of the world either and I for one will do whatever I have to to live my life as normal as I possibly can. If that means having to take shots 3 times a week of a med that helps to slow the progression I'll do it, it's better than the alternative. I plan to fight this disease as long as I can and live life to it's fullest.

I totally agree! (wish this site had a "like" button)

**maximumlite** · 08-07-2011, 01:58 AM

Originally posted by Sunshine MacGee View Post

I was just recently diagnosed with MS.

My doctor prescribed Rebif and the nurse is coming by in a few days to show me how to use it.

I was skeptical before about taking medication but now even more so.

I might have a hard time with my current symptoms sometimes, but it sounds like, they'll be worse/different if I take the Rebif. Plus, my current symptoms arent really that bad.

I sometimes take alleve if I know I will be out and about, but I don't take that regularly either because it seems to dry out my hair. (I am vain.)

so, anyway, I think that I have decided not to take the Rebif now.

Just because of my bad week there is no way I'm going to stop my Rebif, I've read a lot of copaxone reactions and that was my first choice but now I'm happy I chose Rebif, this week has been good just a slight fever after Fridays shot but that is normal and ibuprofen takes care of it.

I can say this as my symptoms are not that bad compared to other people but I was at a neuro's office in Jan. and he said I did'nt have MS. At the end of Feb. I had a pretty good flair and lost feeling in a couple of fingers and 2 toes and part of my foot. In April went for second opinion from a MS neuro and was told I had MS and was in a Flair.

You have no idea how pissed i'm at the first neuro, had he made a proper DX and started me on a med I might not have had a flair and my neuro said I probally would never get the feeling back and so far he is right. What if something else worse happend that was not reversable. Take your Rebif, because the what if's or had I and I wish I took the med will not help you if you change your mind and not take it and you have a flair and it leaves with it something is permanate. Do you really want to take that chance?

If I had worse side effects I would still take my Rebif as some many Rebif users say after 4 months the side effects just seem to stop. If you don't like Aleve take Ibuprofen or Motrin and they make products to take care of your hair. While reading these post did you also notice all the positive things said about Rebif or did you just pick the bad?

I stay in regular touch with a few people that started Rebif around the same time as me and we always compare what is going on and we all agree Rebif has been good to us so far and I've never had a red mark and one of us gets bruises but she has had that problem her whole life with needles so all I can say is at least try it as you have $3000 worth of meds in your fridge. Please take control of this MS before it takes control of you. Sorry for the long post

**Kimba22** · 08-07-2011, 04:25 AM

Sunshine Macgee,

Agree with Maximumlite, nyblondie, and sportsfan. Don't let my post scare you ... I'm a rarity, and not just with the Rebif.

(Dr. House would love me!) Everyone if different on how well they adjust and tolerate a med.

Even if you think your symptoms are mild, the disease can still be active (it's called "silent" damage). You won't know if or if not more is going on until your neuro sees your next MRI. Once the symptoms arises, it may never go away, and the damage may be permanent.

There are other options out there if you really can't tolerate the side effects. I just moved on to a different DMD. Please try it ... otherwise, you are playing russian roulette. I went undx for several years ... so no meds were ever offered to me & now I do have permanent damage. Once it's happened, you can't turn the clock back.

Would've, could've, should've aren't thoughts you want to have later on.

**Kimba22** · 08-07-2011, 04:45 AM

Sunshine MacGee,

As far as your hair ... find a good product to use on it, & sleep with a good conditioner on your hair once a week. (Put a shower cap on ... well worth the results).

Have you considered how your vanity would be affected once you need to use a cane, walker, wheelchair, or if you are bedridden?

I'd rather be bald!

**CocoH** · 08-08-2011, 10:23 AM

I've been on Rebif for a year. The first few months were really rough but now it's no problem. Occasionally I'll get a bit of a fever and some night sweats but its rare & totally random. I still get a mild headache & the red spots. All and all, not many side effects anymore. Hang in there, it will get better as your body gets used to the drug.

Join Date: Jun 2024 · 08-09-2011, 11:41 PM

Originally posted by Sunshine MacGee View Post

I was just recently diagnosed with MS.

My doctor prescribed Rebif and the nurse is coming by in a few days to show me how to use it.

I was skeptical before about taking medication but now even more so.

I might have a hard time with my current symptoms sometimes, but it sounds like, they'll be worse/different if I take the Rebif. Plus, my current symptoms arent really that bad.

I sometimes take alleve if I know I will be out and about, but I don't take that regularly either because it seems to dry out my hair. (I am vain.)

so, anyway, I think that I have decided not to take the Rebif now.

I'm in the same boat as you, very skeptical about the dmd's. In fact after my diagnosis in April, it took the doctor two months to convince me to start one. I started Rebif June 24th and it absolutely has not been easy for me. It's better with the tips I got here and from the Rebif nurse, but I still get flu like symptoms, just milder. It hasn't stopped me from getting to work everyday, so I'm currently content to stick with the program as more experienced heads than mine recommend. The proof will come eventually on an mri or a relapse, and I'll decide then whether this is right for me.

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