Rebif users...can you give me your side effects story?

[lovemy6monkeys]

I saw my neuro yesterday about this leg pain I've been having. It is a spastic muscle issue, but luckily it is getting better so I'm just going to let it run it's course.

We went over the appointment I had with the MS specialist 2 weeks ago. Though the specialist said he is fine with me staying on Copaxone, due to the two new lesions on my MRI, and the fact that I've had a really rough 4 months, we decided that it is worth it to try a new DMD.

We decided to go with Rebif. I know that the most common side effect is flu-like symptoms.

I'm hoping some past or present Rebif users can tell me how bad their side effects were, if they went away after being on the medicine for a while, and what you did to minimize side effects?

Thanks so much for your help!
~Jess

[MsmsinFl]

I've been on Rebif 22mcg for 2 1/2 years.  No relapses.  For a while, the thigh shots burned for a few seconds as I injected,  but  it's better now.

I sometimes have a small headache the morning after, but it's rare, and I have no other flu-y issues.  i admit that before I started Rebif the flu-y idea really bothered me, but it's never been an issue.

I use the auto injector, set at the next-to-shallowest setting (<<)

I inject after dinner;  I pre-medicate with 1 advil & 1 benadryl.  I use a heating pad to warm the site, and after the shot I use warm washcloth compresses for a few minutes.  I still get big red spots that last for weeks, but don't hurt or itch.

My best advice:  Take time to choose your injection spots -- look for as much fat as you can find.  I'm pretty slender, and that's my biggest challenge.  My belly is easiest, thighs the worst -- I don't use my arms -- no fat there!  And look at your skin, avoiding stretch marks & visible veins.

good luck -- for most of us this is not nearly as bad as we expect it to be.

[Mike_Shuswap]

I've been using Rebif for almost a year and a half now.

Like Shell, I did get mild flu like symptoms for the first while, but they were tolerable. I take 2 Tylenol extra strength 1/2 hour before my shot. I take the shot at bed time, and if I wake up after a few hours with a headache, or the chills, I take another couple tylenol.

I still occasionally wake up feverish (chills), maybe once every 2 months or so.

I use the Rebismart auto injector (I don't think it's available in the US yet) which holds a vial with three 44mcg doses (one weeks supply), whis is kept at room temperature, so no cold shots for me to worry about.

For the first 6 months I got a blood test every month, then it went to once every six months.

Good luck with your choice of Rebif. I also feel it has been helping me, only one relapse last year, and no new lesions on my last MRI.

A Newfoundlander.....big beautiful dogs!.....Big grocery bill too ;)

Mike

[sllowe]

Hi Jess!

You didn't babble, lol
Yes, I do inject at night - usually after a shower. Just a little doubling up where sanitation and injecting needles goes (in addition to the alcohol of course). I take my shot out of the fridge during the day, and then put it on the vanity while I shower. Not only does it ensure room temperature medicine, the shower water softens up my skin, making the injection even smoother and painless.

For me, I have had headaches on and off during the following days, but not all the time. It's not a "given" every day. As for the achey, that comes during the day, but it's not super bothersome, and not even comparible to flu-ache - just moreso the kind of ache that makes you feel you should do some stretching. So, I do it, lol

Make your dinners early when you are still good :) I know there is nothing like "just" prepared and to the table, but it's priceless to be able to relax knowing it's made, and all you have to do is heat it.
That goes for setting the table too!
Have at it early - you may find sitting and resting late afternoon (because supper is done) gives you a little extra umpf to straighten up the mess because you've not been on your feet for hours just cooking it! And, if you are shot, load up that sink and get it in the morn.

Keep that optimism of yours it's inspiring:)

(((((hugs)))
shell

[lovemy6monkeys]

Shell, thank you so much for the reply! I go to get lab work done on Saturday. My neuro is adding in a full rheumetalogical workup, too because the MS specialist thinks I have something else going on and I should see a rheumy, but my neuro does not like any area rheumy's. He figures he'll get the blood work started for me while he asks around to find someone to recommend.

Do you do your shot at night before bed? How long do the headaches or achiness last after each shot?

I'm hoping this works well for me too! I thought the copaxone was working really well, I only had minor issues for almost a year, but the last few months have been tough.

I'm keeping optimistic that the Rebif will get me back to where I was 6 months ago...but it is tough because right now things have changed so much. My DH applied for (and was approved for) FLMA coverage at his work, plus he was just allowed to switch his scheduled hours a bit so he goes in 30 minutes earlier but also gets home 30 minutes earlier so he can help me get dinner ready every night. I'm pretty wiped out by mid-afternoon.

I've also had some balance issues more often, even without the vertigo, so that stinks, too. The silver lining in that is we moved up our plans to buy a family dog from "sometime in the next 5-8 years", to "hopefully we'll get one this year" (we've already put a deposit down). The other good thing is since I will eventually be training the puppy to be a balance dog for me, we needed to get a "giant breed" of dog...which my absolute favorite breed just happens to be (a newfoundland). I'm really looking forward to having a puppy! I've never really been around dogs much, but I love them :-)

I'm sorry to babble so much! I think I need to cut back on my coffee LOL
I hope you have a great day! And thank you again for your reply!
~Jess

[sllowe]

Hey Jess,

Excellent choice.
I've been on Rebif since 07, and found the flu-like to be super tolerable. I've had the flu, and there is no comparison to me. I was a bit achey, and did get headaches.  I pre-medicate with naproxen (500 mgs) and find it to be enough for me.

It's true that you adjust after a couple of months of being on it. I did stop Rebif more than once, and strange, but when re-starting I didn't have hardly any side-affects and I was expecting to have to go through that couple month adjustment again and was so happy there was no adjustment period.

The scientists are learning so much in terms of biomarkers, and who will respond to what med. Today changing up and trying another is our only option. But, the future will be different.

I'm convinced I respond to an interferon because my MRIs are unchanged.
I very wish this for you too :)

After coming off copax daily, you may find the needle size, and 3 times week schedule very tolerable as well. I inject myself w/out an auto injector and I have minimal injection site reactions. There is a small burn at times because the med is acidic. But other than that I only get silver dollar size red marks a couple days after - they are not raised, do not itch, and are not bothersome.

Are you lined up for labs? Thyroid, CBC and liver enzymes? To establish a baseline?

Ask anything, and hope this med serves you as well as it's serving me :)
-shell