I am starting Rebif on Monday. Just want to know experiences others have had, either positive or negative. Side effects etc. Thank you.
Rebif: I am starting Rebif on Monday. Just... - My MSAA Community
Rebif
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dar58
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So far good. I have just finished my second month and only experienced the "flu like" symptoms once. Although a friend had that every time and changed meds because of it. I'm just diagnosed in May so I have nothing to compare it to...
I have been on Rebif for 4 years. It has been working really well for me. I have had very little change on my MRI's. I do deal with the flu like symptoms but if I take 1 ibuprofen an hour before my injection and 1 two hours after it takes the edge off. Staying hydrated also helps. Good luck.
I've been diagnosed with MS about 8 yrs. and was I shocked! I went from being very strong and athletic to going to, I can hardly walk outside w/o being tired.
So it did a 360 on my life but having for 8 years I'm learning to deal with all that MS has taken away from my "normal" life.
For the past about 4-5 yrs. I've been on Rebif 44mcg. I have learned from the beginning to take 2-Tynenol prior to my injections.... And I wait about 15-minutes then give myself the injection.I know what you mean about where do I give my injection next. Everybody is different but I tried several times on the front of my legs and I would break out in a terrible rash. So, the most comforting area are my buttocks and my arms. I try on my stomach but it really hurts.
I think the fatigue and the pain is the worse thing for me, and of course not being able to go out in the sun.... I was a Sun Worshipper, LOL. There are times when I've been in bed for 2-days and needed assistance with going to the bathroom. My othe half is an Angel as he usually cooks all meals and keeps the house clean, and of course does the grocery shopping.
I also found that for me I do have a Psychiatrist I see and he's great! I also see a Psycologist and it's great to vent out, and she has helped a lot as I also have depression which doesn't help if you have MS.
Well, that's a the long and short of my MS World. If anyone wants to ask me anything feel free to contact me...
Have a good day, and "try" to think positive, I know it's hard to do especially when your dealing w/pain and other MS symptoms.BTW- I don't have much if any of a short term memory. I can tell ya what happened 30yrs. Also, it's difficult to count money to give change!
Ciao for Now!
Lakiee
I have been on rebif for 1 year now. I definitely think it has helped keep the neurological attacks at bay, however, like all MS treatments it does nothing for the symptoms of MS, merely adds some side effects.
When I first started it wasn't so bad. But after I started titrating up to the highest does, the side effects were terrible for a few weeks. After that, things settled down.
Helpful hints: I would HIGHLY HIGHLY suggest NOT using the automatic injectors!!, but using a regular syringe, because injecting in slowly is much less painful, and the rush of side effects isn't as intense! It will sting when injected, I even feel a rush as the medicine goes into my system.
You will welt/ have redness around the injection site, like half-dollar size, that usually show up the next day and take ~7-10 days to go away. For this reason I do not inject in my arms, the few people I know who take Rebif or other injections don't because of the welts showing. I rotate hips, stomach, and legs. I keep a calendar next to my bed, so to remind me, and when I am procrastinating doing my injection my boyfriend reminds me.
I don't know if you are familiar with injecting yourself, but I had a hard time for the 1st year, so I asked my primary for help and she prescribed me a numbing cream (generic of EMLA) I could put on my injection site 1-2 hrs prior to injection, to help not feel the poke. I got used to it after a few months, and no longer need the cream.
It is best to inject at night, right before you go to bed, to help you rest off the flu side effects & headaches & dizziness. I usually take 2x AlevePM ~30 minutes before I inject, and that helps with the headaches, pain, flu, etc. and helps you fall asleep after. Also, taking a shower or bath, not hot, but warm/cool helps before I take the AlevePM & inject. Being hydrated is very important, or I find the injection hurts more.
I also don't consume any alcohol or caffeine ever, wether it is MS or Rebif related, it exacerbates my symptoms. So juice & water only! The most caffeine I get is from a piece of dark chocolate here and there.
If you have any specific questions let me know! Best wishes!! You can do it!! It takes a few months to start really working, and about ~6 months to really get used to it, but it is do able!
marcie20 in reply to
I agree with you and did the exact same thing. This routine worked well for me. I didn't think about the numbing cream or I would probably still be taking Rebif. I stopped doing Rebif since my dr. told me about Gilenya.
I almost hesitate to post my Rebif experience but keep in mind we all react so differently. I was on Rebif for about 6months? Had flu-like stuff for about 4 months which settled down a little but had to use Advil and then Tylenol because of Gastro issues but aside from these issues a deep dark depressive hole set in and it took about 4 weeks after stopping Rebif that i surfaced back to myself. I have not have good luck with Meds, I had allergic reactions to Copaxone and Aubagio ..... Flu-like symptoms and depression with Avonex and Rebif not sure where I am going next. But we all react so differently and hopefully you will ace the Rebif. Keep strong
SherylAnn, just wanted to let you know that Gilenya is a good alternative. I also used to be on Rebif.
Dar58,
Hi it is Fancy1959. The first therapy I was on 3 - 4 years ago was Rebiff. I have met dozens of MS Warriors who find Rebiff to be an effective therapy without issue. So please don't let my experience make you cringe. I was very thin and I had a very hard time with the shots. I only had limited spots where I could inject them and that caused some issues. I also found the shots uncomfortable. I didn't have any other flu like side effects, so that was good. I was on it for about six months when my MS attacked my optic nerves and I started with double vision. My Neurologists immediately changed my therapy to Tysabri.
I wish you the best and remember we are always here if need to ask questions or share experiences. Information is our friend and together we stronger. Keep fighting whatever MS throws your way. If it knocks you down get back up. Fight on MS Warrior, fight on! We are all in this together!
Thank you everyone fr your replies and suggestions. I will take full avantage of the suggestions offered here by you all. Tomorrow is the day I start, the nurse is coming in the afternoon. She called to remind me to take it out of the fridge an hour before she is to arrive.
I forgot to mention something, I would also self inject, without the auto injector. I controlled the speed that way. I also put syringe in my underarm area for a few minutes, to warm it up, it hurts more if you inject it cold. Always alternate the injection site, and I did my shot around bedtime.
It was the first treatment I was put on, after diagnosis in 2013. I am 51, and went through 3 Neurologists, before finally being dx'ed. I have had symptoms since my mid 30's, but ignored them. I felt like I had the flu Monday through Friday, while injecting Rebif, M, W and Fridays. It did not stop the relapses, as I had 4 major flares in 2 years on it. I recommend, you take Motrin, or other fever reducing meds, before injections. Drink lots of water and try to get at least 7 hours sleep each night. My Neurologist, said some people do very well on Rebif. I did the first year. Remember, we are all different. I wish good luck.
