This Is MS Multiple Sclerosis Community: Knowledge & Support

This is my sixth week on Rebif and second week on the 44mcg. I took my shot last night at 8pm, along with an Advilpm, went to bed at 11 and woke up at 1am. I had the usual chills, burning eyes and achy shoulders but as I lay there, I felt my heart beat normally for a few ticks then give a giant thump, this continued for several more hours. I woke my husband at 4am and discussed going to the emergency room but I'm chalking it up to anxiety this time. I was scared by it and I think that made it much worse.
Has anyone else ever experienced this on Rebiff?

Yes, I experienced that also. But only a few times. I figured it was the MS and never thought about it being the Rebif.

Cat

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

Thanks for replying, I was really wondering about it. It's been a week and it hasn't happened again so I guess I won't worry about it. Take Care!

Karazhan- Hello, I hope you are doing better on this drug. I wanted to tell you my story a month ago but I didn't want to discourage anyone. Some people sound like they adjust and do just fine on this drug, I didn't. My neuro found five new lesions on my newest MRI in Feb 2009 and wanted to treat it aggressively. I had been on copaxone for about eleven years with good results and no reactions. I said ok switch me to Rebif which he suggested. It was not to bad at first, but I was taking 2- ibprphen, 1- tylenol, 10 mg ambien, just to get though the night. By the first week of 44mg I was a zombie on the couch, that was not the problem, my heart went nuts. I had atrium fibrillation maybe once a month normally, but at 44mg I had to go see a cardiologist. They put me on a heart monitor for six weeks. My readings came up atrium fibs which they said was normal. I made a choice to get off Rebif, but my heart got worse. In mid march I went out of state with the heart monitor. I ended up checking into a hospital with chest pain and wild fibs. After two days of testing they let me go home by plane. When I got home my cardiologist here said I was older (56) and that atrium fibs were normal under20 mins episodes, so get use to it. My MS Dr said he thought the Rebif exacerbated my condition but did not cause the condition. Soooooo as of today my condition is slightly better. My heart afibs up to 40mins or more at a time and once or twice a day. I believe Rebif damaged my heart. It may get better but I am not the same and do not of the evergy or do half of the things I use to do before Feb 2009. I really do hope you can tolerate it better than I did, good luck- Islandgirl

Hi Islandgirl,
I'm sorry to hear that you're having so many heart problems with the Ifn-B. I'm not thoroughly familiar with Rebif's doctors prescribing information pamphlet, but have you checked the side effects listed in it for heart problems? Note that it does list the following conditions under Hematologic Disorders: Leukopenia, Lymphadenopathy, Thrombocytopenia, and Anemia all of which are increased by Rebif.

NHE

Hello NHE, yes, My MS-Neruo told me that heart problems were not associated with Re-bif so he thought it was exacerbating my own condition, but a friend of mind got mad and read Rebif's drug info on the computer (I only read the info the nurse gave me which I thought was the same). My friend said that on page 10 is does mention it! All I know is that I closed that chapter of my life real quick and didn't care to look back. I don't have problems with the conditions you mention except I have always been anemic. Thus far in my life I have had herpes zoster, epstein bar virus, mononucleosis and transverse myelitis and finally MS. Everything came and went accept MS. Actually I feel like a miracle girl. I always thought these conditions were autoimmune related but my good friend Mrhodes40 told me they were not. So I don't know what the heck is going on? I walk but stumble alot and fall sometimes. I am in line for the CCSVI this July 6th. Are you thinking of that treatment? Where are you in this mase of difficulty called MS? I hope doing well - Islandgirl

Islandgirl,

It's been nearly four months since i started Rebif. I would consider myself in the category of "tolerates it"....but just barely. The heart palpatations continue but sporadically (as in a four to 6 hour spell every couple of weeks) and I had NEVER had anything like that before Rebif.
As to the other issues (flu stuff), that I KNOW are caused by the drug. I still don't understand the extremes. I either feel absolutely fine or terribly sick for the next 16 hours or so. My odds of feeling fine seem to be running about 5 to 1. I'd love to know what causes the 1. Is it something I'm doing differently or maybe how well the drug is absorbed into my system on that particular injection day?

Hi,

I am on Rebif since Dec. '08, do not have any side effects, thanks G'd, except after given myself a shot on my leg it is staying a pinkish colour for some time, so i'm giving my legs a break. I only feel fatigue or a bit tired, if I overdo something and my energy is out the window.....

But I wanted to know, what you mean with "heart palpatations", what happens, English is not my first language, so never used this word before.

I guess, we all react differently to any of the drugs out there, and my only luck with this whole MS is, that I do not have the side effects and hope I do not get them.

I feel sometimes, like a ALIEN came into my body.......

Just so you know, I sent you a PM a couple of days ago that answers your question.

NHE

Bez,

What I call a heart palpatation probably has a more technical term (atrium defibrillation?) but here's what I mean: Several steady, normal heartbeats, then a slight pause, then a very large, abnormal heartbeat.

I'm sorry you feel like there's an alien in you
Let's just hope it doesn't try to come out through your stomach! <--(reference to the movie "Alien")...sorry for that

Karazhan - I think anybody on Rebif has to be very strong physically. I found that if I didn't drink a pitcher of water with each injection that I had all the symptoms. they seemed to course through my body. I would be feverish for a few hrs, then chilled for a few hrs. then sick for a while, and when I got to the 44mg doses I had the worst headaches, splitting head aches. More water helped me. Good luck to you Islandgirl

Thank you for explaining......this has not happened to me, and I hope it won't.......

In regard to drinking water, the rebif nurse had told me that in the beginning lots of water......but than have to rush to the.......

if it is a cute alien, i would not mind, did see the film....scary....

I will definitely try drinking lots of water at shot time, starting tonight. Thanks for the advice!

I think hydration is the key to the treatments we take, whether it is Rebif, Avonex, Copaxone, betaseron and Tysabri. We have to keep the fluids moving through our bodies.

When I took my first Tysabri infusion I meet a lady who had been on tysabri for many months and she told me the most important thing i could do on infusion day and for several days after was hydrate, hydrate, hydrate!!!

I can tell when i don't get enough fluids, i feel different.

Cat

_________________
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.