My experience with ReBif

A board to discuss the Multiple Sclerosis modifying drug Rebif

My experience with ReBif

Postby shoetree » Mon May 09, 2011 5:23 pm

Sorry to purposely create a new post when there already is a header for such discussion. I just want to share my experience as it is still relatively new and evolving.

First, a little about me. I am a 30year old white male, born and raised from Windsor Ontario Canada. I have never smoked cigarettes, do not drink alcohol (I could count the times I have gotten drunk on one hand). Never done drugs. I always did my best to avoid such terrible behavior.
Live a very active lifestyle, I am very athletic, have been working out for the past 10 years pretty consistenly. Never been overweight and follow a balanced nutritional diet.

Last May I had a bout of numbness in my left hand/arm. This attack is what sounded off the alarm. The numbness is persistent in my left hand, mostly in my fingers. I have since had attacks in my legs and my left torso. I have had MRI's which show lesions in my brain and spine. However all other tests such as blood test, spinal tap come negative.

After having my legs hit pretty badly, to the point where I couldn't feel my knees touching eachother, I thought long and hard about the medication that my neurologist highly recommended I start.

I have been on the drug for a little over 2 months now and unfortunatel I can't say I am doing well. I have been on the highest dosage of 44 for 2 weeks now. Each time after injection I have had flew like symptoms, severe headaches, terrible fatigue. I inject in my stomach and thigh areas and get red bruise like marks. The size of a quarter.
When I first started at the lower dosage, I was taking my shot just before I slept. I was awakened in the middle of the night with fever and terrible insomnia. I couldn't go back to sleep for hours.
Because of the lack of sleep, i decided to take all shots during morning when I wake up.
I take Rebif 3 times a week (mon-wed-fri). I take an ibuprofen half an hour before I inject. My side effects have hit pretty severely each time. I suffer from terrible fatigue, migraines to the point where my eyeballs hurt which causes me to close my eyes. I will gegt a fever and terrible chills. Also my body and muscles ache.
I have also found that once injection my symptoms exhascerbate in my legs and left hand. Also, the drug may cause depression which family members noticed.
I always have felt much better on the days where I do not inject myself. I have decided that i will continue at the 44 dosage for the next two weeks, and if these terrible symptoms persist I will drop the dosage down from 44 to 22. I will not quit or give up on this drug entirely, but I am not physically nor emotinally doing all that well with this drug.
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Postby carolsue » Tue May 10, 2011 5:36 am

Sorry to hear that you're having such terrible side effects. I only had mild flu symptoms infrequently at first. I consider the red bruises "normal" but no longer use my thighs. Those were the worst.

The fact that you had quite a bit of trouble even at the lower dose may mean that Rebif isn't the right treatment for you. It does sound like you are trying your best to mitigate the effects and giving it an honest try. I'd discuss changing medication with your doctor. Good luck and hang in there.
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Postby alittletired » Tue May 17, 2011 9:32 am

I'm a 47 yo male and been on rebif for about 7 years.
Your experiences kind of mirror my own.

Thankfully I have never been asked to the 44mg dose.
The 22mg is all I can handle. In fact I am just doing the 22mg twice a week, not 3 times a week as recommended.

My effects are pretty much the same as yours but just a bit less (probably the lower dose).

I have always injected before bedtime. The few times is injected in the morning, I was just tired and grumpy all day.
Injecting at night was giving me bad insomnia, so about two years ago I started on a real mild anti-depressant, so now sleeping is way better.

Please take the depression side-effect seriously, my life (and my family's lives) are way better now that I take an AD med.

Good luck to you,

Chris
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Postby shoetree » Tue Jun 14, 2011 6:36 pm

Hi everyone,

Would love to give an update.
I couldn't continue with the high dosage of 44 due to the terrible side effects I was still experiencing. I called my neurologist to confirm that I was lowering the dosage down to 22. My neuro had no objections.

Well, even at the dosage of 22 I still was having the same terrible side effects. I tried taking it in the morning, afternoons, and even at night. I was getting no relief whatsoever. I felt like I really had full blown MS.

I made the decision that I would not continue the drug and at this moment, it has been a good decision. I feel wonderful. In fact, I feel great. I'm not sure if the drug itself has anything to do with how I am feeling at this very moment, but I sincerely feel normal!
My left hand, especially my finger and thumb are still slightly numb, but I think it may very well be that way forever.

I have called the MS Clinic in London to set an appointment with Dr. Kremen. I have already consulted with him once before and he wasn't entirely convinced that I should start any treatment. I will seek his expertise in any other possible drug therapy.
Unfortunately my appt. is not until late Oct.
In the mean time, I will just have to wait and take it easy.
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Postby carolsue » Wed Jun 15, 2011 10:36 am

thanks for the update, and so glad you're feeling better!
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Postby shoetree » Wed Jun 15, 2011 6:32 pm

Thank you Carolsue!

I think it is extremely important for any and every patient to discuss their experiences with any of the DMD's.
I feel as though we are our own best doctor at times. We need to share as much information with each other, because ultimately we are the ones living with this condition. I'm not the most articulate individual in this forum, but I will give a credible and honest evaluation from what I have experienced to date. I think what I have to share is valuable to those who are faced with the same decision as I have been dealt.

I am anxious to connect with Dr. Kremenchutszki (sp?) as I have several questions in need of answers. I have been placed on the cancellation list so I am hopeful that I will get in sooner. Again I will update once anything new becomes available.
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