from rebif to avonex????

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healing spirit
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Date Joined Mar 2008
Total Posts : 177
   Posted 12/19/2008 8:36 AM (GMT -7)   
Ok everyone.....I need some input please.  I have been on rebif for almost 4 months now.  After 1 month at full dose I have constant ringing in my ears, constant muscle pain with some weakness and am generally upset about the fact that I am only getting worse with side effects.  Last week my neuro cut me back to 1/2 dose on the rebif to see if some of this stuff would settle down.  Unforunately after injection my body is shaky and I vibrate around off and on until the next injection time.  Yes I do all the pre meds and have talked to MS lifeline lots!  At this point I am requesting to go off the rebif for at least a month (it takes at least 3 weeks for the stuff to be out of your system) to see if all this stuff is the MS or the rebif.  I have already placed a call this morning to the doctor and requested this with her blessing.  If it is the rebif she had said we could try Avonex since less dose once a week.  Maybe that is all my body will tolerate.  I have said before I don't tolerate a lot of the meds out there.  I don't want to stop a treatment, just want to be able to come back into a better quality of life day to day.  Anyones input would be appreciated.  Thanks,
 
Cindy

Sunnycitrus
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Date Joined Apr 2007
Total Posts : 334
   Posted 12/19/2008 11:56 AM (GMT -7)   

Hi Cindy,

I’m sorry you’re continuing to have a hard time, and I hope it is side effects and not MS that’s causing the difficulty. I’ve never taken any of the interferons, so I don’t have any suggestions there…but I’m wondering if you’ve tried, or considered trying Copaxone? I certainly don’t want to sound like an ad for it and it has its drawbacks as well, but it doesn’t have the flu-like side effects the interferons tend to have. I am really sensitive to meds too, and I was able to tolerate it pretty well when I was on it. I hope some avonex users will chime in here and give you some additional input on that med as well.

Hang in there, and let us know how you feel after your rebif washout period, and what you decide.

Sunny


healing spirit
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Date Joined Mar 2008
Total Posts : 177
   Posted 12/19/2008 12:32 PM (GMT -7)   

Thanks Sunny,

The doctor just called and did take me off the rebif until our next visit which is Feb 3rd.  I am both relieved and upset if you know what I mean.

The thing that scares me about Copaxone is the side effect that you feel like you are having a heart attack.  Right now I am just praying that the side effects I have now quit.  If they don't it means it's the MS.  I just had redo MRI's and there was nothing active so I have to thing that they are side effects.  I will keep you posted.  Thanks again for your input.

Merry Christmas,

Cindy


Denjski
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Date Joined Aug 2008
Total Posts : 105
   Posted 12/19/2008 3:48 PM (GMT -7)   
Hello, Cindy...this is Dennis

I have not tried Rebif, but I was on both Betaseron and Avonex. Both interferon drugs. The Betaseron caused me to become extremely depressed, my doctor wanted to put me on prozac...I said no, I should not have to take a drug just to smooth out the side effects of a different drug.

BTW, there is an elevated risk of suicide for those taking Betaseron. Read the warning label.


As for the Avonex, there were side effects also. With me, there were extreme anxiety attacks. I was starting to have anxiety attacks in my sleep. First though, which was fun for a while, increased my libido. I mean like a 16 year old. But then the anxiety started and that overwhelmed any other feelings. I then, learning my lesson from the Betaseron, read all the small print on the warning label. And anxiety and other side effect are listed,


I'm now on Copaxone, and have been for the past 7 years with no side effects worth mentioning. Try the Copaxone, a daily shot in the skin. Good luck and keep us posted
It seemed like a good idea at the time


healing spirit
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Date Joined Mar 2008
Total Posts : 177
   Posted 12/19/2008 6:47 PM (GMT -7)   

Hi Dennis,

Did you ever have the heart attack symptoms thing happen?  To me that is scarier than flu symptoms.  I have been told there is not much difference in the Avonex and Rebif except with the Rebif you are doing 44 3X a week.  The Avonex is 30 or 33 one time a week.  I might be able to tolerate that better.  We will see.  As of today I am off everything until the first of February.  I want to sort through what is MS and what is drug.  Since I had a huge flare in August and then diagnosed in September, it is hard to tell what is what since starting the rebif Oct 1.  Hopefully this is the Rebif and not all MS.  Thank you so much for your info.

Cindy


Gretchen1
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Date Joined Jan 2007
Total Posts : 3550
   Posted 12/19/2008 7:53 PM (GMT -7)   
Cindy,
 
I am the opposite of you.  I would rather have the IPIR than the flu symptoms.  That "heart attack" symptom does not last that long.  I have had it a couple of times and for me it has not lasted longer than 15 minutes.  I know we have a member here that has had it last as long as an hour.  She seemed to be allergic to it however.  My experiences with it were that I flushed and turned very red, and I had chest pressure like someone sitting on your chest.  It was very uncomfortable but since I knew it was going to be temporary I just sat and relaxed and let it takes it course.  I always told my husband so he could sit with me.......but it was never awful and it would never keep my from injecting the next night.  I had maybe 4 or five in the first year.  I have not had any this year.  Some people never have them.

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 12/19/2008 7:58 PM (GMT -7)   

Hi Gretchen,

I don't know why that freaks me out so bad but it does.  I will of course do whatever the doctor suggests in February.  I am really hoping it is the Rebif and not the MS.  As always thank you for the support.  I felt relieved to stop for now to get my answer but upset to have to stop.  I am all for fighting this crazy disease but I don't want to be miserable while doing it if I don't have too.  Thanks again.

Cindy


Gretchen1
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Date Joined Jan 2007
Total Posts : 3550
   Posted 12/19/2008 8:21 PM (GMT -7)   

My doctor offered me either rebif or copaxone.  She told about both meds and let me choose.  I chose copaxone because it was NOT an interferon.  As I work full time, I wanted something with the least amount of side effects.  I am sounding like an advertisement for copaxone (sunny :).  I am happy with my decision so far.  I have read and read and read, the CRABs all have about the same efficacy.  It really depends upon how your body responds to a particular med. 

Try to stay calm while working this out.  Remember that for the most part, MS progresses slowly.  You have time to find a med that works for you.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 12/20/2008 7:20 AM (GMT -7)   

Thanks Gretchen for all your advice.  I will probably go with the Avonex if my symptoms go away and it is the Rebif.  At least I know what I will be dealing with.  If I can't do the Avonex then of course I will try the Copazone.  Have a great Holiday.  I am wishing my ears stop ringing for Christmas!  HA!

Cindy


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 12/20/2008 8:49 AM (GMT -7)   
That sounds like a good plan, Cindy.  Having a plan, for me, is the key.  I hate that "I can't make up my mind" place that this disease can get you to.  Make a plan and just assume it is going to work for you.  If it doesn't, then re-group, make a new plan and fight on!!!!  Try some loud Christmas music to go with that delightful ear ringing!!!!  Have a good one!!!

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 12/20/2008 2:28 PM (GMT -7)   

Thanks Gretchen,

My husband always makes me keep my sense of humor.  This morning I said "what if my ears don't stop ringing?" Without missing a beat he said "well then I will take you to Walmart and put you out front with a big red bucket".  I cracked up!  I guess you have to understand our sense of humor!!!  Merry Christmas.

Cindy


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 12/20/2008 3:27 PM (GMT -7)   

Oh your husband sounds like mine.  In order to understand my chronic vertigo......he created the 'beer rating scale'  He likes to ask me how my vertigo is by comparing it to how you feel after drinking a few beers.  "How many beers are you today sweetie?"  He is a card and helps me to laugh as well. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 12/20/2008 4:27 PM (GMT -7)   

Gretchen,

We both have a lot to be thankful for.  Not everyone is as lucky as us.  I feel very fortunate.  Thanks again and Happy Holidays.

Cindy


Denjski
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 12/21/2008 12:32 AM (GMT -7)   
Hello Cindy, Dennis again. never had anything side effects like the ones you describe. My only problem has been that sometimes when the needle goes in I don't even feel it,. And then there are other times the needle feels like its been dulled and I'm shoving it through my skin with a lot pain...nothing really serious, but really annoying. :
It seemed like a good idea at the time


Meche
Regular Member


Date Joined Nov 2008
Total Posts : 41
   Posted 12/27/2008 11:31 AM (GMT -7)   

 

 

 

HI CINDY,

I AM CURRENTLY ON REBIF AND SO FAR I HAVE BEEN OK. I HAVE HAD THE FLU LIKE SYMPTOMS BUT NOT SEVERE. A TIP MY MS NURSE GAVE TO ME WAS TAKE IT BEFORE BED ALONG WITH EITHER PARACETEMOL OR IBUPROFEN. THE REASON FOR THIS IS THE SIDE EFFECTS WILL HAPPEN WHILSY YOU SLEEP AND WONT BE SO SEVERE AND THE MEDICINE WORKS DURING THE NIGHT.

MY ROUTINE IS I TAKE MY INJECTION AT 8.30PM ON MON,WED AND FRI AND HAVE WEEKEND FREE. I GO TO BED BOUT 10.30PM AND IT HAS WORKED OK, I HAVE THE OCCASIONAL MIGRAINE BUT AS SOON AS I FEEL IT START I TAKE 2 DISSOLVING CO-CODAMOL, YES SOMETIMES I FEEL LIKE I RATTLE WHEN I WALK WITH ALL THE PAIN KILLERS BUT IF IT HELPS ILL TAKE IT.

I KNOW EVERYONE IS DIFF BUT JUST SOME FRIENDLY ADVICE, AS IT WORKS FOR ME. I HAVE BEEN ON RBIF  SINCE UNE THIS YEAR, STARTED ON 8MG NOW ON 22 AND IT SEEMS TO WORK FOR ME, I WAS OFERED 2 OTHER INTERFERONS 11 WAS AN INJECTION EVERY 6 MTHS AND THE OTHERR WAS INJECTION 1  AWEEK INTO A MUSCLE, BUT I WOUDHAVE ENDED UP HITTING A MAIN ARTERY LOL, THATS JUST MY LUCK, MY DAD ALWAYS SAYS I WOULD WRECK AN ANVAIL LOL.

TAKE CARE

LOVE MECHEXXXX

 

 

 

 

 

 

 

 

 


Meche xx


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 12/27/2008 4:43 PM (GMT -7)   

Hi Meche,

Now that I have been off Rebif for 9 days I can tell you that there are lots of improvements for me in every day life.  One huge difference is that my feet are no longer burning so bad I can hardly wear socks or shoes.  My legs still get sore but I have the strength back in them.  I still have the vibration on occasion but nothing like the last 2 weeks of injecting Rebif.  My ears are still ringing but today is the first time I have had a couple of breaks when they aren't ringing.  As time goes on I am hoping that too will leave.  I have to say that I am much better off the rebif than on.  I will be discussing this on the 12th at my next doctors appointment.  I have to re-do my labs to see if my liver enzymes are back to normal.  I might be one of those people that can't take interferon.  I will keep you posted.  Thanks for you suggestions.  I have tried everything MS lifeline has suggested as well.  It is just the darned meds.  Have a great new year.

Cindy


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 12/27/2008 10:38 PM (GMT -7)   

Hey Cindy,

I am so glad you are feeling better.  Everyone is different.  It definitely sounds like Rebif was NOT for you.  Take care and try not to worry.  Just enjoy the fact that you are feeling better.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


lindz
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/8/2009 1:34 PM (GMT -7)   
 Cindy, I can relate to your rebif problem.  Have been on avonex for 7 yrs no problems, my ins company dropped avonex from my plan & stated rebif was the same just given 3 days a week, Oct switched to Rebif, dosing went fine until I started 44mcg, then the vibrating in my chest started & it was awful, called the Rebif company & they said that sometimes the 44 does is too strong & will cause this ,lowered dose to 22mcg & still vibrating not as bad but everyday, was put on Neurotin which masks the vibrating but it doesn;t go away. End of Nov had enought & told my neorolgist I needed to go back on Avonex, got it approved with my ins company (don't know the new cost yet) Anyway  now I have the flu side effects & the vibrating has not gone away. don't know how this will end. I hope you will have better luck.

healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 1/8/2009 2:18 PM (GMT -7)   

Hi Lindz,

Hang in there.  I am off 23 days now and my ears are still ringing but at least now its off and on during the day, not constant.  I believe your vibration will disappear but gradually.  I have been having a full body massage weekly from a massage school where I assess the students for one of their grades(I am a therapist).  Every week after my massage, all the symptoms of rebif come back for at least a few hours.  That just means it is still in my muscle tissue and the massage is kicking it out into my blood stream and then hopefully through the lymph system and out of my body.  Drugs can sometimes take a very long time to completely be gone out of your system.  Please tell me a couple of things.  Are you sensitive to medicines?  I am and so I am hoping the doctor can find something I can take.  Please tell me what kind of side effects you had on Avonex.  I think that will be my next try.  I don't think copaxone will work for me as my skin is really sensitive to stuff and I am worried about the hear attack feeling type side effect. 

Thanks for your input.

Cindy


lindz
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/8/2009 2:55 PM (GMT -7)   
 Cindy, I first started with Copaxone in 1999, not big deal, no side effects, most of my ms is in disability in left leg Have had no ms flare-ups since optic neurotis in 1996, basically drop foot.2002 started both Copaxone & Avonex at the same time, since my ins at the time covered both my neur. wanted to test try both, after 1 yr of feeling like a pin cushion I said one or the other, I choose Avonex because it was 1 a week. The only side effect until this rebif fiasco was an occaional head ache.  I have noticed when I'd miss a week of avonex my right leg gets numb. So as far as ms I can't complain until now. Rebif , Drs. should have a better understanding of the drug before they prescribe it, I got more info from the drug company after I had probelms than my current neuro.  Rebif has 2 stregnths, one is the 44 the other is the 22 there is a choice , not just putiing you from 8 to 22 to 44. there also is 4,8 & 22. The rebif company recomends the 22 for people like me with mild systoms, I wish I had known that before my Dr automatically did the 8,22 & 44. Before Rebif Avonex was easy with an occasional headache, now I have had chills for 2 days & I'm still vibrating, like I said the vibrating isn't as bad but it is driving me crazy. I'm not drug sensitive but I'm also not use to have any kinds of issues with ms. The only good thing is, the side effects are drug related, not ms, but if I have to get off Avonex for any length of time to stop this vibrating, I'm not sure what that will do I hate insurance companies!!

healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 1/8/2009 5:29 PM (GMT -7)   

Lindz,

I was just diagnosed Sept 2008.  The neuro I had (I have since changed) diagnosed me, told me rebif would call me and said he would see me at the end of January.  Everything I learned about rebif and a lot of things about MS that I hadn't learned in anatomy class, I learned from MS lifeline and the National MS Society.  I did know you could stay on 22 and have it still be effective.  I might try it again but at a low, very slow dose.  Either that or the Avonex.  I would prefer the once a week 30mcg.  That is still less than 44 3 x a week.  I did change neurologists in October after feeling really bad, hard to walk at times, felt so so tired, had the shakes and my legs were killing me.  That doctor was no help at all.  Now that I am off, I still have problems with my legs and neuropathic burn in my feet, just not as bad.  The vibration is 80% gone.  When I am over tired some of it comes back.  I am going to work on something that I can tolerate for the neuropathic pain.  I have already tried lyrica and neurontin.  Those I couldn't tolerate.  I tried Cymbalta but that was when I was on rebif.  I had a real problem with my stomach the couple of days I took it.  I really think it was the Cymbalta.  They say low dose tricycline anti depressants work.  Something to think about.  Good luck and I hope all those crazy things stop soon. 

Cindy


Colonel Shepherd
New Member


Date Joined Sep 2013
Total Posts : 1
   Posted 9/16/2013 7:50 AM (GMT -7)   
Dear Cindy,

I realise this is a very old post now and its been a few years however, I was wondering how you are feeling with regard to your Tinnitus?

You see, I've recently been diagnosed with MS in May this year and I've started on Rebif a few weeks ago. For the first two weeks the dosage was 8.8 Micrograms, its currently 22 only to increase this Friday to 44. Approximately one week after starting the Rebif, I noticed the ringing in the ears was amplified. I already suffer with Tinnitus, but its usually at a calm level in the background and I hardly notice its there.

Also since starting the Rebif, I've noticed my existing MS Symptoms are also amplified. For me this is very painful burning feet/legs/tummy, not to mention the headaches!

I can cope with everything except the Tinnitus, I notice it pretty much 75% of the time and sometimes my whole head just feel like its vibrating and ringing away. Extremely unpleasant.

Well, I do hope you have recovered from your Rebif/Tinnitus experience and your MS is under control.

Kind Regards.
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