I will be starting Rebif this week at the lowest dose of 8 mcgs. My doctor thinks the highest I should be Titrated to is 22mcgs. He thinks 44mcgs would be too much for my weight (100lb). Will this drug be effective at 22mcgs? Is anyone else on 22mcgs permanently? Does it matter what my weight is?
Rebif is actually not injected according to weight. The drug itself is desgined to be given at full dosage, 44 mcgs. There have been two major studies on Rebif 22 vs. Rebif 44 and you can read up on them. They are called the Prisms Study and the Spectims Study. Ask your doctor what he thinks of the outcomes based on the results of these clinical studies.
I was on Rebif for 6 years, and weigh 110 lbs. I used full dosage and was lesion free during that time. I had no side effects beyond the normal ones and those too, went away after a certain amount of time. (about 2.5 months).
There are no MS specialists recommending less than full dosage which I am aware of- is your doctor a MS specialist or regular Neuro? Have you asked him what he thinks will happen if you take full dosage? Have you discussed the clinical trials which have been done ? THis is a good time to start discussing it with him and finding out his reasons why he doesnt want you on full dosage. If it were me, I would insist on full dosage, simply because weight is not a factor in administration. You might want to call MSLifelines and talk to one of the nurses there; they have been known to call physicians and educate them on patient concerns.
He is not a MS specialist but has been practicing for 25 years and treats many people with MS. He also was involved on the initial research and production of interferon 15-20 years ago so I had faith in him. I am starting to question him though especially since I insisted on a cervical MRI. My brain MRI had only a single small lesion and I went back for the cervical spine to find multiple lesions. I have an appt next week with a specialist at a MS center. Though it is further away from my house I will probably continue to go there
Hi, your story sounds somewhat similar to what happened to me, except i wish i was 100 lbs!! The neuro that first dx me with possible ms also said that i would only go up to 22 mcg, but the reason that he gave me was that he didn't feel that i needed to be at the 44mcg.
Shortly after the initial dx, i went to see an ms specialist at a ms center also. I live outside of nyc but i go into the city for the ms specialist and i think it is well worth it, even though it is father from home. Both my husband and i work in nyc so i try to schedule appointments on days when i have work and can plan to leave early.
The ms specialist basically told me exactly what Nikki said, and changed me up to the 44 mcg. I like the first neuro that i saw, but i am much more comfortable with the ms specialist. When i was admitted into the hospital last year and dx after ON, my husband and i asked the neuro in the hospital if the neuro i was seeing was good. He told us that he was, but that if i were his sister he would be sending me to an ms specialist. That comment always stuck with me and i'm really glad i switched.
I've read that some others on here go to a regular neuro for routine appointments, but see an ms specialist like once a year or something. Good luck with the rebif and whatever decision you make!
Ill also admit that I live outside NYC too...in Northern NJ. I used to see a MS specialist and hated him- he had no bedside manner. The orignal Neuro whom I was seeing when I was dx, has also been in practice for 20+ years and specializes in MS. He actually did a fellowship with the MS specialist he recommneded. Nevertheless, I stopped seeing the MS specialist and continued on with my regular Neuro for years.
Recently, I have gone thru some changes radiographically, and had gone off Rebif for a year, due to building up antibodies. Im going to see the original specialist on July 19th and although I dont like him, I feel he is more qualified to make some decisions for me and my medical future.
im going thru some real learning experiences here this month~ and I apprecicate hearing what happens with you Lisa when you see your specialist.