My Rare Reaction To Rebif

[22cyclist]

I only took Rebif for 4 months. About 2 months into it, on the full 44 mcg does, I began having trouble with shortness of breath when walking around and I thought, man this is weird, I don't have asthma or anything and MS doesn't cause this. Then I started getting little red/purple marks on my ankles and temple (petechiae), which I recognized. I called MS lifelines and asked them about this and the shortness of breath, they said probably not from the medicine, but call the doctor. I did. They took blood. I had been nauseous, and feeling bad-I thought just flu-like symptoms from the medicine. My blood counts were all low, very low, my liver enzymes were very high, and my kidney functions were very high. They had me to stop the medicine for 2 weeks. Took blood again, and my blood levels had dropped again. It took over 1 month for them to stabilize. I had just ignored how badly I felt on Rebif. For 3 months I just did absolutely nothing and felt horrible. I am an RN and should have known better. This is a rare complication, but if a DMD is making you feel bad, more than you think it should, and you don't get answers from your DMD nurse, call your doctor and take action. I didn't. I now am on Tysabri. I know this med works great for most people, just a warning to listen to your body.

[Sara Angela]

I was the same way. I felt awful on Rebif! Although, I didn't have the shortness of breath. Four months later, I'm still dealing with low WBC.

Sara

[polly2448]

I have been on rebif for seven years. It gave me horrible headaches on the 44 so I was cut to 22. It has kept me "stable" BUT, I HATE THE STUFF. Why? You should see my skin, I have some sort of a rash, and my hair IS STILL FALLING OUT. I thought all this would subside but it hasn't.
Now what to do? Get off and take a chance something else will keep me stable? At my witts end

[22cyclist]

I have been on rebif for seven years. It gave me horrible headaches on the 44 so I was cut to 22. It has kept me "stable" BUT, I HATE THE STUFF. Why? You should see my skin, I have some sort of a rash, and my hair IS STILL FALLING OUT. I thought all this would subside but it hasn't.
Now what to do? Get off and take a chance something else will keep me stable? At my witts end

Polly: Have they checked your thyroid? Rebif can really effect it. If you are unhappy, you might consider switching, but they all have their evils I have learned. I think I liked Copaxone the best in terms of the no physical side effects.

The dents in places where the shots went I could have done without. Unfortunately, it didn't work for me...I got new lesions with it. Don't just suffer though, talk to your doc about it. There may be a better option for you. I waited WAY too long to complain and nearly had bone marrow failure.

[polly2448]

Thanks for replying, I am thinking about switching but I feel as though I am playing russian roulette with all of this.
I don't get the usual symptoms on drugs I get the rare ones, so that is what keeps me on this one. I guess you could say the devil you know vs. the devil you don't.
I truly would like to get off all DMD's but that probably is a big mistake as well.
I did talk to my neuro about the BG-12 which is about to come out. She said it does appear to be safe but who knows if it will keep me stable.
Guess what? I want to get off this merry-go-round.
Good talking to you.

[owlnona]

I'm so sorry you had that bad reaction,I was on Rebif for 12yrs. Last March I took my Fri. injection as usual,by Mom. It was so swollen,red & hurt. I went to my pcp & he sent me to the hospital,AT ONCE.After 3 weeks & 2 rounds of antiboitics,I ended up in the wound care center. It took 6weeks to heal,I'm left w/ a nasty scare & still have pain.
At the start they took me off Rebif & my neuro still will not put me back on it. He's giving me untill next Feb. so far I've been fine,on nothing.
I Pray you're better,Nona Judy

[lukeduke]

I have been on Rebif for over 5 years. It is the first and only DMD I have used. I think it is working good. But with MS I am declining a little bit. I am going to go to the Shepherd Center in Atlanta in November to get a secone opinion. I think it a little strange to get a second opinion after almost 6 years, but my step mother wants me to go for one. She also wants me to switch to Tysabri. I am scared of Tysabri. I have been praying about it and I did decide that as long as I test negative for the JC and we can get it paid for I will try it. My aunt says that I am too educated about Tysabri.

[22cyclist]

I have been on Rebif for over 5 years. It is the first and only DMD I have used. I think it is working good. But with MS I am declining a little bit. I am going to go to the Shepherd Center in Atlanta in November to get a secone opinion. I think it a little strange to get a second opinion after almost 6 years, but my step mother wants me to go for one. She also wants me to switch to Tysabri. I am scared of Tysabri. I have been praying about it and I did decide that as long as I test negative for the JC and we can get it paid for I will try it. My aunt says that I am too educated about Tysabri.

Lukeduke: As long as you are JCV-, Tysabri is nothing to fear. So far, I like it. Many people I know have done quite well on it. Most all of these meds have some unknown truth be told, but Ty has been extensively studied and is tightly controlled.

You seem very informed. As long as you go into it with your eyes wide open you will be fine. I am glad you are going for a second opinion. Better to do that now than to continue to decline on this medicine. Hopefully a switch will slow things down for you a bit.

[msmoonlite]

I have been on Rebif for over 5 years. It is the first and only DMD I have used. I think it is working good. But with MS I am declining a little bit. I am going to go to the Shepherd Center in Atlanta in November to get a secone opinion. I think it a little strange to get a second opinion after almost 6 years, but my step mother wants me to go for one. She also wants me to switch to Tysabri. I am scared of Tysabri. I have been praying about it and I did decide that as long as I test negative for the JC and we can get it paid for I will try it. My aunt says that I am too educated about Tysabri.

I was in the same boat as you, on Rebif for 7 years with the same neuro, but I seemed to be slowly declining. I suffered from really bad side effects and my balance was really getting bad. Hubs suggested I find a new neuro, and as soon as she saw me she suggested Tysabri, as long as I was JCV-.

I was really scared of even thinking about Tysabri, since that seemed to be the drug of last resort. When my JCV test came back negative I cried because I knew that meant changing to Ty, and I was terrified.

I had my first infusion a few weeks ago and I'm due for number 2 next week. I had no side effects (maybe fatigue for a few days after but that weekend was extremely hot here so I don't know if it was the heat or the Ty). I can't tell you how glad I am to not have to take injections 3 times a week and to not deal with side effects.

I'm glad I went for the second opinion (even though I miss my first neuro). Most importantly I'm happy to be on Tysabri.

[lukeduke]

Well I have been praying about the second opinion and the TY. I am still a little bit scared of the TY, but I have come to terms with it. I have decided that as long as I am JC- I am willing to try it. I am both excited and scared about all of this. My cousin asked me when I was first diagnosed how I liked my neuro. He was new to the area then. I told her that he is a stubborn, ornery, know-it-all Q@$ERT#. We get along just fine. I am still hoping that BG-12 will come out soon and have amazing results. I am still not a fan of needles after ovr 5 years. The strange thing is though that I donate blood regularly.

[CycleSurgeon]

Well I have been praying about the second opinion and the TY. I am still a little bit scared of the TY, but I have come to terms with it. I have decided that as long as I am JC- I am willing to try it. I am both excited and scared about all of this. My cousin asked me when I was first diagnosed how I liked my neuro. He was new to the area then. I told her that he is a stubborn, ornery, know-it-all Q@$ERT#. We get along just fine. I am still hoping that BG-12 will come out soon and have amazing results. I am still not a fan of needles after ovr 5 years. The strange thing is though that I donate blood regularly.

You will be fine with the Ty infusions then, and the side effects are basically nil. Except for a headache. Drink some tea the day of, and after, it helps. Someone on here told me to do it, and it works. Advil too. NO PROBLEM!

Good choice!

[mjfraser]

I only took Rebif for 4 months. About 2 months into it, on the full 44 mcg does, I began having trouble with shortness of breath when walking around and I thought, man this is weird, I don't have asthma or anything and MS doesn't cause this. Then I started getting little red/purple marks on my ankles and temple (petechiae), which I recognized. I called MS lifelines and asked them about this and the shortness of breath, they said probably not from the medicine, but call the doctor. I did. They took blood. I had been nauseous, and feeling bad-I thought just flu-like symptoms from the medicine. My blood counts were all low, very low, my liver enzymes were very high, and my kidney functions were very high. They had me to stop the medicine for 2 weeks. Took blood again, and my blood levels had dropped again. It took over 1 month for them to stabilize. I had just ignored how badly I felt on Rebif. For 3 months I just did absolutely nothing and felt horrible. I am an RN and should have known better. This is a rare complication, but if a DMD is making you feel bad, more than you think it should, and you don't get answers from your DMD nurse, call your doctor and take action. I didn't. I now am on Tysabri. I know this med works great for most people, just a warning to listen to your body.

I too suffered the same problems with the Rebif. I had to be taken off it as well 5 months ago. I took nothing for 3 months waiting for my bloodcounts to get back to normal. I am now on Copaxone. It is too early to tell how it will work but I am so thankful not to be dealing with all the flu like symptoms from the Rebif. It was HORRIBLE!!!!!!! No Life!! Hope you find the right DMD for you. I too am still searching for the right fit.