New Rebif user with a question

A board to discuss the Multiple Sclerosis modifying drug Rebif

New Rebif user with a question

Postby BeckyLA » Tue Dec 07, 2004 4:31 pm

Hey all! I just made the decision to try Rebif as my first stab (get it?..."stab", hee hee) at MS treatment. That is, if you don't count my more-fun-than-a-person-should-have solumedrol treatment last month. Yuck. My question for you guys is; how long can the medication stay at room temperature? All the literature I read says "temporarily". That's pretty vague. I know my mom's copaxone can stay out of the fridge for 7 days, but that's an entirely different drug.

Beyond that, you're probably going to be getting a lot of questions from me and requests for advice.

Thanks,
Becky
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Postby oreo » Tue Dec 07, 2004 6:40 pm

"Rebif syringes may be stored for a limited period (while travelling or where a refrigerator is not available, for example) at room temperature (up to 25 degrees C), but not for more than 1 month."

from

A Guide To Rebif (Interferon Beta-1a) Therapy, page 8
Serono Canada

By the way - ask all the question you want - there's lots of help here.
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Postby carolsue » Tue Dec 07, 2004 11:21 pm

and I highly recommend letting it warm up to room temperature or even bod temperature before injecting. I put the syringe under my armpit for a few minutes before--much less pain.

good luck with it!

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Postby seelie » Wed Dec 08, 2004 4:46 am

carolsue wrote:and I highly recommend letting it warm up to room temperature or even bod temperature before injecting. I put the syringe under my armpit for a few minutes before--much less pain.

good luck with it!

carolsue
Yeah... What she said :) Except I've tricked my wife into warming it up for me in her hands... makes it more like "we're doing it together"....

I found the Ice didn't help a bit with the burning (because it's a strong base) during injection... but heat helps some. I use a moist towel with a heating pad over it for bout 20 minutes prior to sticking myself. Last night's stick didn't sting at all....

And don't even bother with that stoopid Rebiject thing In My Opinion... most everyone I've heard from has rejected that thing after a while.

My inject pattern is belly, right thigh, left thigh.... I alternate sides of the belly button week to week... but that's about as complicated as I've gotten with it.... no need to hit all the sites unless you get one of those injection site reactions which I haven't had so far -- Thankfully

If you haven't taken any interferon before, you're probably not going to enjoy it at first.... but if you tuff it out, it gets better. Actually, I still don't enjoy it....

And of course - Your mileage may vary. I wish you the best Becky!!!!

Regards )O(
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I used to think that if I tried, I would drown.
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Postby bebe » Wed Dec 08, 2004 6:56 pm

To answer you question, it can be left a room temp up to 30 days. I would recommend leaving your box out of the refrigerator, unless you receive more than a 30 day supply (the refrigerate the rest). As far as the Rebiject, make sure that you have the new Rebiject 11, which you probably do since you are a new user....its much better than the fist Rebiject. Good luck!
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Rebif - storage, administration and long term use

Postby AmazingGrace » Mon Jun 06, 2005 2:01 am

I've been on Rebif since October 2000 -- yes folks, that's 4 1/2 years. It is the only MS treatment I've ever used and it has worked exactly as promised. Yes, the first night it felt like I had the flu but I was happy because the side effects let me know it was working. There were injection site reactions, and tissue necrosis but these things do decrease over time -- the bruising stopped within the first year and I rarely notice where my last shot was.

At first a nurse gave me the shots, then my husband for a few months and finally I took over. I've always been afraid of needles but I needed to do this.

My pattern is this: I warm up the syringe by placing it in my bra for a few minutes, while waiting I keep a blanket over my legs to warm them up and then I use a few fingers to poke the thigh area looking for an area that isn't sore and the flesh is soft. Then I clean the area with alcohol, dry it with cotton, pinch the area, gently place the needle straight down and slowly push it in -- yes, I said slowly. If it begins to hurt (really hurt) I remove the needle and try a spot a centimeter or two away. Usually I can feel if the spot is too painful before the needle even goes in and I've only had to remove a fully inserted needle once. This probably sounds painful but it isn't. I'm too scared to just jab it in and I've found that going in slowly, reminding myself that it doesn't hurt, it best for me. I always use my thighs and have never run out of sites. No, I don't have huge thunder thighs -- size 10.

Originally Rebif was a blood product and could not be left out of the fridge except for very brief periods of time (less than an hour). The new recombinant stuff can be left out of the fridge for up to 30 days but I wouldn't leave it in the sun or on the stove!

When I started on Rebif I had headaches -- non stop disabling headaches that were not migranes. One week on Rebif and the headaches were gone. When diagnosed I had lots of lesions, one located in my frontal lobe measured 10 mm in diameter. The last MRI showed all of the original lesions have healed, but the MS is still active with a few tiny new lesions showing up each time. After the first year on Rebif I've settled in to having one relapse every 2 years. I haven't had one in two years so I'm a little nervous now.

Just discovered this website yesterday and I'm excited that Antigren has been approved by the FDA. I've been working a full time high stress job (Modafinil is great!) for the past two years so I'm out of touch with MS news. I can't wait to try Antigren alongside Rebif and reestablish the old blood brain barrier.

I guess I am a success story but I'm hoping that Antigren will shut off the demyelinating process and I can stop making new lesions. That would be as close to a cure as I could ever hope for, and more than I ever expected. Rebif has been good at healing lesions, now if I can just stop making new ones........

Sorry this is so long, but since Rebif has only been sold in the United States for the past 2 years, there may not be that many people around who have been on it this long. Originally I got my information from a Canadian website run by Francois, a Rebif pioneer and, for a Francophone, his English wasn't bad either. Canadian patients would probably be the best source for information about the long term use of Rebif.

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