Rebif and side effects

[Lori J]

Hello everyone!
I am new to the boards and was dx with RRMS in June 2009. I began Rebif 1 yr ago and experienced the typical side effects that I was warned about. I was told the side effects would dissipate after a period of time and not come back. My bloodwork has all been good apart from a slight decrease in my white blood cells but my MS Dr.has not been concerned as it is only a slight decrease.
After about 3 months of flu like symptoms, chills, headaches, sore throat and runny nose my symptoms disappeared and I was so happy and relieved. Then about two months later my symptoms came back full force and seemingly worse. This lasted for a period of a few weeks or more then completely disappeared.
For the past year I have been experiencing side effects in cycles and they seem to be getting worse or perhaps I am just less tolerant to the side effects because it is debilitating me. I am currently having a bad cycle. I have an extremely bad headache which is constant. I go to bed each night in pain and awake in pain. I feel sick to my stomach, have no appetite and feel like I have a sore throat coming on. On top of that fatigue. Is this normal?
I have an appt in December at the MS clinic a follow up to starting this drug therapy a year ago and I have one more blood test to do before my appt. with the neuro. The nurse at the clinic is nolonger there and so I have not been able to discuss this with anyone except my family dr. and she is monitoring me.
I am not so sure that Rebif is helping me and I dont know if the side effects are worth it. I am doing everything I can regarding a good diet and exercise to stay healthy and strong. However I am thinking that Rebif may not be the therapy for me.
Sorry for the long post and I thankyou for taking the time to read this. Any sharing of info or suggestions would be greatly appreciated.
Thankyou
Lori J

[jessiesmom]

Rebif and Side Effects

Hi Lori,

I am sorry to hear that you are having such a difficult time with Rebif.It just shouldn't be so bad. I have been taking Rebif for almost 5 years and have never had the kind of problems you have described. I even took Rebif while I was undergoing chemotherapy and didn't have such extensive problems. I still occasionally have the chills or a low-grade fever but nothing much else. It seems to me that if the side effects of a medication are worse than the disease itself then it is time to find an alternative. Since Rebif is an interferon have you considered taking Copaxone which is not an interferon but is glatiramer acetate?

You might want to consider putting your post on the Medications forum. You will probably get more responses and this problem is not specific to Canadians. Good luck.

[Lori J]

Hi Lori,

I am sorry to hear that you are having such a difficult time with Rebif.It just shouldn't be so bad. I have been taking Rebif for almost 5 years and have never had the kind of problems you have described. I even took Rebif while I was undergoing chemotherapy and didn't have such extensive problems. I still occasionally have the chills or a low-grade fever but nothing much else. It seems to me that if the side effects of a medication are worse than the disease itself then it is time to find an alternative. Since Rebif is an interferon have you considered taking Copaxone which is not an interferon but is glatiramer acetate?

You might want to consider putting your post on the Medications forum. You will probably get more responses and this problem is not specific to Canadians. Good luck.

Hi Jessies mom, thankyou for your post I am brand new to the boards and first posted here, however I found the medications board and also posted and got some good replies so I thank you. Yes, I have an appt at the ms clinic in December and yes I am definately considering Copaxone. I really was hoping the side effects from rebif would go away, unfortunately I just dont think my body likes it. I have a friend who has been on it for 10 yrs and it has worked very effectively for her with very minimal or no side effects. Also looking into Gilenya or LDN, going to discuss it with the neuro.
thankyou