update finally on Rebif

[bamabelle]

Just checking in. Our lives have been greatly upturned from dx of MS in March. We're hanging in there. Hubby just started the 22mcg of Rebif and is preparing to titrate up to the 44mcg this upcoming week.

Neuro put him on Ritalin and Feldene for the massive aches and exhaustion. Not gonna lie, this 22mcg of Rebif has him curled in bed the next day.

Dread the increase dose, but we must move forward. Trying to stay positive and give the REbif 3 or 4 months.

Anyone else with ideas or ever tried Ritalin? It has very mild effects that are very temporary for his fatigue.

HOpe you all are doing well. Thankful still for small miracles.

Belle

[Kimba22]

bamabelle,

Sorry to hear about your hubby. I don't have any personal experience with Ritalin or Feldene, so can't comment on those. But, I may have a possible suggestion to explore about Rebif. That may be to stay at the 22 mcg dosing of Rebif for a longer time, hopefully allowing him to adjust to it. I would imagine the 44 mcg dose will hit him even harder than the 22 mcg dose.

My MS Specialist put me on a revised medication dosage to try to keep me on the drug after I started getting dangerously high fevers after my injection. For me, I had already been on the drug a while when I suddenly started having this reaction. Anyways, we tried to rechallenge my system with the drug by starting at only 11 mcg and very, very SLOWLY titrating the dose up to 22 mcg over the course 4 weeks. After that, I was to stay on 22 mcg for a few months and then try to titrate very slowly until I finally reached the 44 mcg dose. My neuro still felt I could benefit from the 22 mcg dose, even if my body couldn't readjust to the 44 mcg dose.

I got another dangerously high fever just below the 22 mcg dose, so I was taken off the drug. I then went on Betaseron and didn't have a problem with fevers.

I commend your hubby for wanting to give the drug a fair try for 3-4 months. I really hope his body adjusts to the drug and, most of all, it proves beneficial. Keep us posted, O.K.?

Best wishes,

[MSwhileOverseas]

Hi Belle

I have been wondering how your husband was doing. If I remember correctly, which I often don't anymore, your husband was a lot like me. We both had bad attacks out of no where.

My attack was in February and I have been on Rebif for 5 months. If I remember to take an advil or aleve before the shot I usually do ok. If I forget or don't have one I ache all night and then suffer the next day from lack of sleep. Since I live overseas I get my meds from Singapore and only have four to choose from that are easily available there so I plan to stick with it at least until I move back to the US.

My doctor had told me when I started if I was having a hard time I would stay at 22mcg longer. I didn't end up needing to do that but like the other poster mentioned your husband might consider staying on 22 mcg for awhile longer.

I have a huge problem with fatigue. I went to the MS doctor in Houston last week while I am home for the summer and he gave nuvigil for fatigue. I am trying to find the right dose and time to take it. At the dose he prescribed it helps a lot but I don't sleep at night. What seems to work the best is taking a half pill around 9-10. I still get tired but don't feel like I will fall asleep the second I sit down. It also seems to help me think clearer.

Is he still continuing to improve? I am but it is very slow and I have a really good day and then seems like I have several really bad days.

I hate the question "how are you doing?" Compared to Feb 14th I am doing great, compared to Feb 1st I am doing pretty crappy. Like you guys I am trying to stay positive and learn what my new "normal" is.

Hopefully he will get some benefit from the Ritalin.