Time for a change?

[Life4MeNow]

I was diagnosed with MS when I was 15 and I'm 24 now so I've been on Rebif for almost 10 years, it's the only mecication I've ever taken.. I have had a difficult time for the last few years and my neurologist has recommened changing to a different medicine. I've had a decent expierence with the Rebif, never having any issues other than mild flu like symptoms, so changing to something new worries me. Just not knowing what to expect. My options are either Tysabri or Gilenya. I was wondering if anyone else has had a long run with Rebif and possibly switched to either one of the other medications and if so what has your expierence been?

[dalechilders51]

Life4menow, I on avonex for several years and kept having flares and progressing. I switched to Tysabri about 6 years ago and the flares stopped and the progression slowed/stopped. I have done well on Ty and glad it was an option. Reaserch you choices well and dicuss you concerns with your neuro. Be well and take care Dale

[lukeduke]

I was on Rebif from March 2007 until November 2012. I never really had the problems with it as long as I remembered to Pre-Medicate. There are several other options out there. Gilenya, Tysabri, BG-12, and the other Interferons as well as Copaxone. I know lots of people who take the Copaxone. I'm a bit of a scaredy cat when it comes to needles so I chose Rebif as my first treatment. It was fewer shots and a smaller needle than Avonex.

[MSer102]

I have had a difficult time for the last few years and my neurologist has recommened changing to a different medicine.

If you've been having a difficult time then it makes sense for you to change medicines. Rebif is in the group of medicines that has the lowest rate of overall effectiveness of all of the DMD's. You have a long life ahead of you so its probably a good idea to change to something that might be more effective. I think a lot of people changed from one CRAB drug to a different one but that doesn't sound like it would be the best idea for you.

Right now Tysabri is the approved drug that has the highest overall effectiveness so its a good choice IF you don't have the JC virus. If you do and you don't want the lowest chance of getting PML then you could use Gilenya. But there's also Aubagio and Tecfidera. Another option is Rituxan - that's a chemotherapy drug that's used off label for MS. Some people have done very well on it. You might ask your neurologist why you weren't given those other options.

Everybody reacts to drugs differently so the only way to know what's going to happen for you is to try it.

[Kimba22]

I was on Avonex and then Rebif. I had no problems when I moved on to Rebif (both are interferon 1-a), but after 2 1/2 years I developed a bad allergic reaction and had to discontinue it.

I was then on Betaseron and Copaxone, but they weren't a benefit to me. I also tried Cyytoxan, a chemo drug.

I have been on Gilenya, but it was discontinued after several months because my wbc count was too low. It seemed to help as far as my MS, but set me up for some bad infections. I was pretty sick for several months.

I am now on Tysabri, which finally seems to have stabilized my MS. I was resistant to starting Ty, but there is now a blood test to see if you have the JC antibody. This is the virus responsible for PML. For now, I've tested JC negative.

I wouldn't stay with Rebif anymore if you are progressing. I wonder if your neuro tested to see if you've developed neutralizing antibodies to the drug. It makes sense that he would want you to go on Gilenya or Tysabri, though, if you are having a harder time with your MS. They have shown greater efficacy than the other drugs.

Tecfidera has just been FDA approved and might be another option for you. It is supposed to have a safer profile than than the other 2.

Best wishes,

[allHailye2]

Life4MeNow - I am in the exact same boat u are! I've been on rebif for 13yrs now & it's the only drug I've ever taken. I would like to switch to tecfidera...but like u, rebif is the only drug I know & the idea of switching is scary. The unknown & all that.

Let me know what u decide!

[lydialou]

I agree that switching to another DMD is scary. I have been on Rebif forever. It was the first drug and only drug I have taken. I have had no relapses which is great. I don't have site reactions ever-oops maybe very rarely is a better term.

Unfortunately, I have seen something else that bothers me and I have considered talking with my neuro about it. I am having problems with anxiety. I see it getting worse as time goes by-like this last year. I have always been a worrier but this is a different kind. In fact, several months ago I got this flyer from MS Lifelines about depression and when I read it-----I thought it described exactly how I was feeling. For example, sometimes I hate to get into the car and go anywhere because all I can think about is what might happen while I am a passenger or the driver. I know that is NOT rational. And I can't get rid of the feeling. When I am doing something at home, I put on something -like a radio talk show or the tv so that my thoughts stay away from the "what if" thoughts.

So-I have to go this month and I will talk to him about it then. Maybe someone else has had this happen to them. If so, please say so. I am beginning to think I am losing my marbles.

lydialou

[lydialou]

I saw the NP at my neuro's office today for my 6 month visit. We had talked about my anxiety problems before so that was on my list again today. It just seems like it has gotten worse this past year. So we are making some changes.

She put me on an antidepressant and decreased my Rebif. Instead of taking 44micrograms I will take 22. I go back in three months to see her and talk about how things are going. Hopefully this will make things better for me. Despite this anxiety issues, rebif has done a good job for me over the years so I hate to just leap to something else. But I also hate the way I am feeling-mentally.

This is a more conservative change. I will have an MRI in 6 months to see how things look inside. She did mention going to one of the new oral meds. Looks like I have some reading to do! My neuro is excellent so every time I see him, he talks about new treatments so I already know a little about them. We also did blood work in anticipation of a change,too. Need to know more about my white cells before changing!

Keeping my fingers crossed!!

Lydialou

[allHailye2]

weighing pros and cons! argh! i'm thinking about my depression also. hoping that if i stop rebif, my depression will get better.

i had depression before dx, then ms causes depression, and interferon causes depression. it's like i have 3 strikes.

i see my neuro next week.