New to Rebif

[sexygatubela]

So, this is week #6 and I'm at the 22 mcg dose for two more weeks, and then I go to the 44 mcg dose. Besides the flu-like symptoms (which I usually feel the day after, not the night of the injection); I'm losing weight (5 lbs since I started), stomach pain, back pain, have developed a diarrhea for the last 3 days, and my hair is falling out.

Are these common side effects as well? I'm getting a little antsy to start the higher dose, especially because of the flu-like symptoms. It just puts me down, like today.

Any advice is appreciated.

Thanks!

[Sara Angela]

Drinking a lot of water will help the flu symptoms. I'm not sure on the other stuff.'

Sara

[22cyclist]

So, this is week #6 and I'm at the 22 mcg dose for two more weeks, and then I go to the 44 mcg dose. Besides the flu-like symptoms (which I usually feel the day after, not the night of the injection); I'm losing weight (5 lbs since I started), stomach pain, back pain, have developed a diarrhea for the last 3 days, and my hair is falling out.

Are these common side effects as well? I'm getting a little antsy to start the higher dose, especially because of the flu-like symptoms. It just puts me down, like today.

Any advice is appreciated.

Thanks!

You need to call your neurologist and let them know about these symptoms. Rebif can cause liver and blood problems. Not trying to scare you, but the stomach pain and back pain could spell liver enzymes high...just easy to check.

Even at low doses, sometimes people just don't tolerate the interferons. Otherwise, it may be just something coincidental and you will just be being safe rather than sorry, you know?

You can also call your Rebif nurse and check in with her/him with these symptoms.

Feel better.

[polly2448]

Hi,

Sorry to hear about your experience with rebif. Do you pre-medicate with aleve? That is about the only thing that works.
I have been on rebif for 7 years, I will say with aleve I do not get the flu symptoms. I did get horrible headaches at the 44 dose so after about a year I went to the 22 and that's where I am today.
I can speak to the hair loss. I got it and still do. At first I panicked and bought a wig! Well I don't need it but in places my hair is quite thin. That is one thing that doesn't stop. Seems the growing thing and the sleeping thing (don't know what it's called) gets messed up. Oh lucky us.

[sexygatubela]

Thank you all for the advice. I will call the doctor on Thursday (Budenstag holiday tomorrow). The tummy ache is not letting up and my stomach is upside down.

I'll keep you posted.

Thanks again

[sexygatubela]

I went yesterday to get my blood checked and got a phone call this evening that my liver enzymes are elevated five times over the normal limit. And, here we go again, I thought.

The GP is going to fax the results over to my neuro. He said to reduce or stop Rebif, so let's see what the neuro says.

It seems like my body dislikes MS medicines.

Thanks for reading.

[Alicious]

Thank goodness you had your levels checked. I hope they can find a good way to treat your MS with minimal side effects.

[sexygatubela]

Thanks Alicious! I got another phone call this morning from the doctor's office and got a referral to a university hospital. My neuro told me at my last visit that if this didn't work, there wasn't much that a neuro in that setting could do for me. So, I'm going to the university hospital next week. I went to pick up the referral and got a copy of the tests results. All liver enzymes were 7 to 13 times over the normal limit. No wonder my tummy aches!

I feel so helpless, frustrated, and I hate seeing my husband so disheartened. But, that's how that saying goes: "MS sucks!".

Meanwhile, I'm finishing getting together all my paperwork to send in to a other hospital to see if I'm a good candidate for HSCT.

Thanks again for reading. It's been a hard day and a hard week and I feel so alone.

[Alicious]

Is the neuro at the university hospital a specialist? I'm glad your current doc knows when it's time to send you on to someone else. Thank goodness you listened to your body. I hate the interferons (they make me feel like hell), but your reaction was actually hurting you, which is just terrible.

It's hard to watch the husband feel helpless. I hear you on that one; they want to help and protect, and all they can do is hold your hand and offer advice.

Stem cell transplantation sounds fascinating; much luck to you!

Hang in there.

[lukeduke]

Well I have been on Rebif sine March 2007. I tolerate it well and haven't had the liver issues with it. My last MRI showed lots of new plaques so my current neuro wants us to think about switching. He did not say what, but I am thinking him and my parents will be leaning towards Tysabri. I have an appointment next month at the Shepherd Center in Atlanta, GA. We will see how that goes. I know the Dr. I am going to see really pushes Tysabri. We will see how that goes.

[mjfraser]

So, this is week #6 and I'm at the 22 mcg dose for two more weeks, and then I go to the 44 mcg dose. Besides the flu-like symptoms (which I usually feel the day after, not the night of the injection); I'm losing weight (5 lbs since I started), stomach pain, back pain, have developed a diarrhea for the last 3 days, and my hair is falling out.

Are these common side effects as well? I'm getting a little antsy to start the higher dose, especially because of the flu-like symptoms. It just puts me down, like today.

Any advice is appreciated.

Thanks!

I too went through the high levels on Liver enzymes as well as kidney function was affected. I had to stop Rebif 5 months ago because of that as well as my White blood cell count went really low. My body did not like or adjust to Rebif at all. I also had the horrible stomach aches with vomiting. My hair..... Don't even get me started on my hair. I have lost so much hair over Rebif I could just cry right now thinking of it. I am still loosing hair 5 months later trying to recover from it. I pray it recovers soon because I'm not going to have any hair left. I pray things get better for you soon.

[Will2b]

Starting Rebif tomorrow after having stopped Tysabri 3 months ago.

Well I have been on Rebif sine March 2007. I tolerate it well and haven't had the liver issues with it. My last MRI showed lots of new plaques so my current neuro wants us to think about switching. He did not say what, but I am thinking him and my parents will be leaning towards Tysabri. I have an appointment next month at the Shepherd Center in Atlanta, GA. We will see how that goes. I know the Dr. I am going to see really pushes Tysabri. We will see how that goes.

Hi lukeduke,

I was on Tysabri for 32 months and decided to stop due to testing positive for the JC virus antibody. My new neuro put me on Rebif and I will be starting it tomorrow. I'm excited to start something safer; however, I'm equally disappointed that I am stopping a med (Tysabri) that had proven to be so effective for me. Every MRI post-instigation of Tysabri showed no new lesions and no disease activity. Tysabri was extremely effective for me and easy to use. I will miss that.

Rebif at least looks safe. No threat of any lethal reactions!

[sexygatubela]

Liver seems under control now--stopped Rebif

Hi friends:

So, I've been away for a while because my liver problems got really bad. My liver enzymes shoot up to over 20 times the upper limit. As with any hepatitis, I wasn't functioning at all. Tired, tired, fatigued at all hours and had to lay to sleep a lot everyday. Lost 10-15 lbs, stomach ache, barely ate; horrible! I got a urine infection also (first ever!) that couldn't get treated because my liver was so inflamed. Also, my urine test were abnormal with protein and bilirubin super high because my kidneys were working extra hard. My face broke out horribly (I'm still breaking out).

My poor DH took so many sick time out of work to take care of me and the kiddos.

I'm feeling much better and have an appointment to see a new neuro just before Christmas. My old neuro referred me there. I saw him one last time during the crisis and he said that my MS is very difficult to control. . He was honest, which I appreciated, and also told me it wasn't my fault (at times you really need to hear this; it was comforting).

Still waiting on a response from the Heildelberg Hospital to see if I'm a candidate for stem cells.

Hope you all are doing well. Thanks for catching up with me.

[pnowsitall]

Rebif

So your elevated liver enzymes were due to Rebif?

That's weird. I guess every person is different on this medicine. I've been on Rebif, first medicine, since Jan 2011, and all of my levels in the blood were fine.

So far, no relapses after my initial ON, so I am guessing that Rebif is working. I'm really sorry to hear you are on your third medicine. Try to take a look into BG12, the pill that will be coming out soon.

[loden813]

symptoms

Sorry to hear about all the symptoms - I've been on rebif 44 for 3 years now. The first year was awful! Sick the following day, injection site issues, etc. Now it is not so bad at all...just a mild headache and I do get the back pain also. Not sure what's up with that!
Hope you improve more quickly!
peace,
loden