It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board

Rebif side effects


Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 01-17-2011, 06:58 AM   #1
Scottiex
Junior Member
(male)
 
Join Date: Jan 2011
Location: Ottawa, Canada
Posts: 10
Scottiex HB User
Rebif side effects

Hello all and sorry for the long post but itís my first one so I felt I should right a bit about myselfÖ Iíve been lurking on this site for quite some time now and it has really been informative for me. A year and a half ago I woke up with tingling and numbness in my fingers, palm and forearm on the left side. I had it checked out and after a year of x-rays, MRIís, lumbar puncture more MRIís I was diagnosed with CIS in November. In my original MRI it showed one lessons in the brain and two in my neck but according to the neurologist these lesions were not located in an area that would affect my left arm and fingers? Subsequent MRIís showed no new lesions but to this day I still have the numbness and tingling. It varies in severity from day to day but itís always present. After a year of this sensation is it safe to say that the damage wherever it occurred is permanent?

I was offered my choice of CRAB drugs and based on the injection method and number of times per week I felt that Rebif was the one for me. I have been at full dose since mid December and I can say that I have been miserable ever since. I have no problem sleeping thru the night (except when my 4 month old or 2 year old wakes us). When I wake up my body aches, especially my back. After a very hot shower and an Advil it subsided but by mid afternoon Iím feeling it again and Iím exhausted. After dinner I can usually fall asleep at the drop of a hat and I fight the fatigue until the kids are asleep and I can wind down. The next day I feel 100% better but 2 out of 3 itís a shot night and I start the process over again. Iíve read on this site that it takes 6 months for the drug to take full effect does it take that long for my body to adapt and the side effect to relax? I donít think I can stick to this drug thru the summer if Iím feeling the way I do now. I want to enjoy and play with my kids now because everyone knows they wonít want to play with their dad when there teenagersÖ


Thanks,

 
Sponsors Lightbulb
   
Old 01-17-2011, 08:45 AM   #2
Snoopy61
Senior Veteran
(female)
 
Join Date: Nov 2007
Posts: 1,550
Snoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB User
Re: Rebif side effects

Quote:
Originally Posted by Scottiex View Post
In my original MRI it showed one lessons in the brain and two in my neck but according to the neurologist these lesions were not located in an area that would affect my left arm and fingers? Subsequent MRIís showed no new lesions but to this day I still have the numbness and tingling. It varies in severity from day to day but itís always present. After a year of this sensation is it safe to say that the damage wherever it occurred is permanent?
Lesions on the Cervical Spine (neck) can cause symptoms from that point down. Regardless, damage to the Central Nervous System can cause symptoms anywhere.

There is no time frame to determine if symptoms are permanent or not. I had/have a symptom which I assumed was permanent after it never changed in 3 years...almost 20 years later I had improvement with that symptom.

Some people have had improvement with numbness when taking Neurontin.
__________________
Dx RRMS 1985
5/9/13/ Secondary Progressive without Progression

 
Old 01-17-2011, 04:42 PM   #3
JodiH
Senior Member
(female)
 
Join Date: Apr 2010
Location: Western New York
Posts: 248
JodiH HB UserJodiH HB UserJodiH HB UserJodiH HB User
Re: Rebif side effects

Scott, I also have a CIS diagnosis but opted for Copaxone because I did not want flu like symptoms and I too have two children, age 12 and 10. I can say many on this board take Rebif with great success and it takes time for your body to adjust and I'm sure you will hear from those posters. If it doesn't work for you, however, there are always alternatives. By the way, I too feel symptoms although my spine does not have lesions. I think that is just how the disease presents itself and those symptoms will come and go. I trust your's will pass.

Last edited by JodiH; 01-17-2011 at 04:43 PM.

 
Old 01-17-2011, 05:46 PM   #4
MSNik
Senior Veteran
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 11,644
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Rebif side effects

Hi Scottiex!
Welcome to the boards. We are glad to have you here with us and no longer lurking!

Your story is much like mine. If you have been reading my story, you know that 5 years ago, I woke up with tingling and numbness in my left hand and fingers and it was my onset symtom. Prior to that, I had had optical neuritis, however at that time, no one mentioned MS to me...was it related? Probably, because I managed to get it two more times in the first year of my diagnosis, but at the time..I was more concerned with the hand and fingers!

My doc was sure the tingling was a pinched nerve and sent me for a CT scan. That, showed abnomalities and a Neurologist was called in to look at the films. He immediately had me in a MRI and within 72 hours, Id had EMGs, spinal taps and seen a MS specialst. Probably one of the fastest diagnosis's on record. I also had over 50 lesions....every single one of them "not in a normal place for MS".

5 years later, I am sorry to say, my tingling and numbness have never subsided. Yes, I am told that its permenanet from an attack on a nerve, which isnt going to resolve. (they are working on tests to regenerate nerve damage, but will it happen in our lifetime?). Ive learned to live with it. I managed to finish my bachelors and MBA ONLINE while working full time- and I have 3 kids. Im working on my PHD now...I type mostly using voice recognition software, I still do everything that I used to do- and I deal with the pain when it reminds me its there. Most of the time, I am so used to it, its not that bad....heat and humidity make it worse. You mentioned that hot showers, etc, seem to help your Rebif symtoms. Are you sure about that? Generally speaking, heat and hot showers SHOULD be making you feel worse. Have you tried tepid water, instead of hot, to see if it helps?

Rebif. The first month on it, I had no symtoms at all. The second month, when I hit mid level of the injections, I started to get flu like symtoms. I can remember being on the bathroom floor all night wishing I could vomit, but not being able to- in month 3...Here is what helped me. Half hour before the shot, take ONE ALEVE. It helps much more then ibuprofin or tylenol...and it lasts 12 hours. Are you icing or using heat before the injection? I used to ice before and after...then, as you know, the side effects ususally kick in about 2 hours post shot.....at that point, I would either take another Aleve (remember, one pill is supposed to last 12 hours, so dont over-do this) or Id take a Tyelenol PM- it worked. Id wake up feeling wonderful....but not until I really tried that combo of drugs.. I never missed a day of school or work when I was getting used to Rebif...

Funny story though. It was month 4 or 5 of being on the drug at full strength (remember the fist 6 weeks are NOT full strength) and my husband and I were in Mexico..and I forgot to do my pre-shot Aleve. I had it with me, but the sun must have fried my brain because I completely forgot to take it, and yet, I did give myself the injection....we went to dinner, where I freaked out- positive that any minute, I was going to be on the floor in agony from not taking that stupid Aleve. ..3 hours went by, no reaction. I went to bed, woke up and felt like a million bucks. The next shot night, I tried it again, no preshot anything...no reaction! The point of my story is when your body finally gets used to this, you will NEVER have another reaction to it again!

Hang in there, you are more then halfway home! It will be easier each time you do the shot...and if you have any other quetions Rebif related, shout out! we are here to help!
Nikki
__________________
RRMS- dx 05

 
Old 01-17-2011, 06:37 PM   #5
Wilc516
Senior Member
(female)
 
Join Date: Mar 2009
Posts: 229
Wilc516 HB UserWilc516 HB User
Re: Rebif side effects

Hey Scottiex!!! Welcome to the boards as unfortunate as it may be that you "need" them!

Add me to the list of the numb/tingling feeling in my hand and arm that led to my diagnosis. I'm approaching the 1st anniversary of my dx and had about 5 months of the numb/tingling before my dx. It hasn't changed for me at all after taking several different meds but that doesn't mean that will be the case for you. It is very annoying to live with but it's not like I have a choice. Things like holding a cup of coffee in my bad hand, the steering wheel, trying to do buttons etc are very difficult. I do however consider myself fortunate that this is happening with my non-dominant hand as it hasn't impacted me as much as it could.

As far as the DMD's go, Nikki has it right. Try to hang in there and one day you will find the bad is behind you and you barely notice the shots anymore. The day will come - it is just a matter of time.

Best wishes to you and hopefully you start to feel better real soon!

 
Old 01-17-2011, 07:31 PM   #6
Scottiex
Junior Member
(male)
 
Join Date: Jan 2011
Location: Ottawa, Canada
Posts: 10
Scottiex HB User
Re: Rebif side effects

Thanks for the replies!

I've joined the right board, communicating with other MSers and having a loving wife will help me threw it. You play the hand you are dealt in life. I know it is in my best interests to stick it threw and stay on the meds but some days are worse than others and on those days you certainly question yourself. Tonight I am tired, kids are asleep and I will soon follow.

Tomorrow will be a better day!

Last edited by Scottiex; 01-17-2011 at 07:33 PM.

 
The following user gives a hug of support to Scottiex:
TiffanyS (01-19-2011)
Old 01-18-2011, 06:23 AM   #7
Wilc516
Senior Member
(female)
 
Join Date: Mar 2009
Posts: 229
Wilc516 HB UserWilc516 HB User
Re: Rebif side effects

Great attitude!!! Don't let this disease win. You can overcome whatever it throws at you, you just need to stay positive. It may be a bumpy road, but every bump has an upside to it! Rest when you need it. The best thing you can do is to listen to your body. Trying to fight off the exhaustion and power through it will only make things worse for you. Take good care of yourself. Eat well, sleep as much as you can and try to exercise. It really does help.

 
Old 01-18-2011, 02:15 PM   #8
Scottiex
Junior Member
(male)
 
Join Date: Jan 2011
Location: Ottawa, Canada
Posts: 10
Scottiex HB User
Re: Rebif side effects

It's interesting to see that a few of you also had the same symptom and in the same area (left hand/finger/arm) as myself. I am lucky to say that I have not experienced the optical neuritis that seems to be more common than not in people with MS. For me the single greatest challenge is the fatigue and I find that the Rebif injections intensify this effect.

Today I've been keeping myself hydrated and I bought some Aleve to take before tonightís injection and Iíll see how it goes tomorrow. Hopefully I will have positive results!

Thanks again for the responses.

 
Old 01-18-2011, 02:48 PM   #9
MSNik
Senior Veteran
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 11,644
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Rebif side effects

Scottie- Good for you trying everything! I do think the Aleve will help...and I also think that once your body gets used to the drug, youll have the opposite effect- youll have more energy.

MS zaps the energy from you, no matter what; however Im living proof that you can work a ten hour day, go to school another 25 hours a week and still have a family (3 kids) and a spouse who depend on you. It can be done...and you will find your way. The first year is absolutely the hardest, its all easier from here...

Please continue to let us know how youre doing! There are lots of unexpected things that come with MS, and Im almost certain you couldnt hit us with one which at least one of us hasnt experienced before.

Just a side note- I havent had a single bout of Optical Neuritis, or any new symtoms since my 6th month on Rebif. I honstly love this drug! (its shot night for me, too- Ill be thinking of you!)
Nikki
__________________
RRMS- dx 05

 
Old 01-18-2011, 06:48 PM   #10
Wilc516
Senior Member
(female)
 
Join Date: Mar 2009
Posts: 229
Wilc516 HB UserWilc516 HB User
Re: Rebif side effects

As usual, I agree with Nikki! I have found that when I do my shot I get a spurt of energy. Enough so that I am considering do my shot in the morning instead of nighttime. If I do it too close to bed time I am all jacked up and can't sleep. It wasn't always this way, but it sure is now!
ni
Severe fatigue is one of the worst aspects of MS. Most people don't understand when you say "I'm tired" exactly what that means to someone with MS. Just try to get as much sleep as you can while you are adjusting.

Your system will level out, it just takes a little time. It may take a few months but once you adjust you will find it less of a nuisance.

 
Old 01-19-2011, 12:46 PM   #11
JodiH
Senior Member
(female)
 
Join Date: Apr 2010
Location: Western New York
Posts: 248
JodiH HB UserJodiH HB UserJodiH HB UserJodiH HB User
Re: Rebif side effects

Well now I am thinking I want to do rebif because the daily shots are getting to be so trying, not to mention the several days of bumps, itch and pain.

 
Old 01-19-2011, 01:49 PM   #12
Scottiex
Junior Member
(male)
 
Join Date: Jan 2011
Location: Ottawa, Canada
Posts: 10
Scottiex HB User
Re: Rebif side effects

JodiH, my reasoning for choosing Rebif was the simplicity of the injection (donít have to mix) plus the reduced number of injections. Initially when I started researching therapies my first thought was Iíll take the Avonex because its only one injection per week. After watching the MS nurse demonstrate the injection and plunge that 1.25Ē needle into the fake skin I said to myself, forget that. With the Rebif Iím actually using the Rebismart device instead of the Rebiject. I have to say that after three month of injecting I love this device (not the side effects) but the Rebismart is very easy to use and has a multitude of comfort settings, needle depth, speed, flow rate, etc. I do get some large red blotches and if Iím not steady they will turn itchy and then feel like a bruise for a few days but Iím getting better.

As an update, I feel great today. Yesterday I drank lots of water, took an Aleve an hour before injection and another one before going to work today. I even had several child/baby induced sleep interruptions throughout the night. Tomorrow is another injection night and Iíll do the same and see if Friday goes as well.

Cheers!

 
Old 01-19-2011, 03:17 PM   #13
MSNik
Senior Veteran
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 11,644
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Rebif side effects

Good luck, Scottiex! I hope those tips that I gave you, continued to work. I am really happy with Rebif- i hope you have the same success!
Nikki
__________________
RRMS- dx 05

 
Old 01-19-2011, 04:35 PM   #14
tubajim
Member
(male)
 
Join Date: Aug 2010
Location: Kentucky
Posts: 74
tubajim HB Usertubajim HB User
Re: Rebif side effects

Month 6 of Rebif not one site reaction. Using a MWF AM schedule w/Aleve and other RX's. It is often difficult to distinguish a symptom from a side effect from "its your turn" to have an C- day. Probably had a few issues in the beginning. A couple months into full dose I was doing better and still am. It is so hard to tell someone to keep doing something that may cause some discomfort - dont assume everything is Rebif! In any case you need that 6 month window to be even a little familiar with how you do longer term. It is an adjustment - but many folks have had little to NO side effects. So - whatever problems I may have been related to the Rebif seem to have largely resolved.

The "energy burst" is possible - harder to quantify but I have experienced something similar and the fatigue issue - which is always there - is not screaming at me. I am better off than if it did nothing at all and things did smooth out after a time. Stay with it. I cannot speak to the clinical issues like time to strength - but if you are looking for confirmation re end of possible side effects - yep - its been that way for me.

Tubajim

 
Old 01-19-2011, 07:53 PM   #15
Crackie
Newbie
(male)
 
Join Date: Jan 2011
Location: Montreal,Quebec,Canada
Posts: 6
Crackie HB User
Re: Rebif side effects

Hello Everyone,
I am new to this site. I found it through a google alert I received tonight. I've been trying to find an informative chat room since the one I was on was shut down by the moderator. After reading some posts, I think I've found it.
I was originally dx with PPMS until recently when I had a minor setback. I experienced some vision issues to which my neuro dx as PRMS. I was told that REBIF might help. I am still not sure if I should start taking this. But with every passing day, my mobility is getting worse, energy is diminishing. I don't know what to do. I have never had had a major relapse but keep reading other MSers stories about the side effects with REBIF.
I need someone who is diagnosed with PPMS or PRMS to tell me what/if they are taking any DMT's and is it working!

This is getting ridiculous!

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Copaxone vs. Avonex vs. Rebif - how to choose silver22 Multiple Sclerosis 5 07-29-2011 11:23 PM
Avonex or Rebif?? ChrisRenee79 Multiple Sclerosis 14 07-18-2011 07:56 PM
Update and Rebif Help ChrisRenee79 Multiple Sclerosis 13 08-06-2010 08:40 AM
Rebif shots silentwarrior Multiple Sclerosis 14 07-23-2010 09:28 PM
Rebif- Second month MSNik Multiple Sclerosis 4 04-17-2010 06:20 AM
Newbie info on Rebif TiffanyS Multiple Sclerosis 26 03-16-2010 06:43 PM
Side effects of Rebif vs. Beta? jaycee30 Multiple Sclerosis 7 10-11-2007 05:17 AM
had my first dose of rebif shelbycat1 Multiple Sclerosis 6 09-18-2007 09:30 AM
rebif Karen8550 Multiple Sclerosis 4 11-05-2006 06:49 PM
Oops, I accidentally took too much Rebif! purple2067 Multiple Sclerosis 7 01-07-2006 04:25 PM




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:34 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2018 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!