Hello everyone. Hot here too (90s) but dry and windy, so if I stay out of direct sun I'm OK. Gotta love high desert.:)

Question: my neuro is going to call this week re spinal tap results. We're both expecting it to confirm MRI results (six MS type lesions in brain) and will be talking about drug protocols. As I've been researching them, I sort of think Betaseron might be my best bet. I know it was approved earlier than some of the others. Does anyone on the board have experience with this drug? is it even widely used anymore?

I'd appreciate any feedback.

Daphne

IT is one of the least prescribed, Daphne...it also has one of the largest needles...are you needlephobic? :D However, because it was one of the first on the market, it actually has the most amount of documented history of working...nothing else has been out as long. I know of people who still use it and love it...its a once a week shot, but it is intra-muscluar which hurts more than sub-cutaneous.

Any drug, is better than NO drug, in my opinoin. I know there are quite a few people here who are handling their MS holistically, and I respect that. I really do, however, for me, making sure that I do not progress is the only thing in the world I care about...so taking anything which is proven, not suggested, is my first concern.

Betaseron is as good a choice as any...you have to make a personal decision. I would say research it as much as you can...many of the drug companies (including Bayer) will be happy to send you information regarding their products...theres tons of ways to get information....asking here was a good start.

Here are some questions to ask yourself:
DO you prefer intra-muscluar to sub-cutaneous?
Would you prefer an intereferon to Copaxone? The side effects are completely different.
How often is injecting going to work for you? For some, 3 times a week keeps the medicine at a level dose- eliminating the "need my drug feeling" on the 6th day others handle once a week just fine, and prefer it over 3 times a week..
and lastly,
Hows your insurance with all this? Hate to bring it up, but some of these drugs are 1200$ a month, some are 2200$ a month and of course when you get into Tysabri, its even more expensive....so, do you have limits with your insurance?
Good luck to you...let us know what you decide..
Nikki

Thanks, Nikki. Talked to neuro on Monday who confirmed O-bands in the spinal fluid \. He wants to try me on Rebif, and that's fine w. me. I'm not needle phobic--have done subcu injections on people, horses, and cats--but I think I really don't want to learn IM techniques--I've got enough hand tremor that it might be tricky. I

I am VERY grateful that my insure=ance is some of the best in the country and costs me very little. They cover all the MS meds.

Daphne

Hey Daphne,
Im on Rebif too. If you have done subcu injections on animals, its almost the same thing...Rebif also has an autoinjector, making it very hard NOT to do it right...the only catch to it is having enough of a "fat"pocket to inject into...the autoinjector KILLS me in the stomache and I self inject there....the REbif nurses are very helpful- I call them often with questions- and they come to your home to teach you..the other thing I loved about Rebif is that it is titrated. You start at a low dose and build up, so your body can adjust...and also, after a few weeks or 2-3 months, you really do stop having symtpoms..
I use Aleve because it works for 12 hours...Ive never had a single problem with my shots after month 2....

When the times comes, ask....Ive got all sorts of hints for you! Congrats on making a huge decision and a huge leap forward.
Nikki

Daphne,

I'm a rebif user also,like nikki I self inject also.But I self inject in the legs auto-inject the belly area.

I must have more belly fat than Nikki(lol)

I use extra strength tylenol before injection,I do it before bed time that way it lessons any side effects that may occur.

The rebif nurses were great and MSlines still call and check to see how the shots go.

Any questions just ask

Thanks, people! I'm sure I'll have more questions once I actually start the drug. I'm the kind of person very optimistic about her own life, pessimistic about the planet. So I really was not thrown by the diagnosis--just learn all I can and go from there. I'm more worried about filing my taxes than I am about MS!!

I did talk to my insurance company today because I need a pre-auth for the Rebif. Fogot to ask if there's a cap on how much they'll pay, but don't think so. I know 2 others w. my insurance who have been on Copazone forever. I'm taking my NY State Employee insurance with me to NM, including the prescription plan. I pay a little more because there isn't a single participating provider in all of NM. NY State has probably the best insurance in the country for its employees. Long may it last, and I'm sure it will under Elliot Spitzer.

Daphne