Multiple Sclerosis (MS) Support Group

Just something to ponder . . .

Each of us are different, as our reactions to meds are. I have had friends who couldn't use Avonex because of flu sx. They were able to use Rebiff, or Betaseron because the symptoms weren't so intense for them.

I can't speak to that, have been on Betaseron for years. For me, the flu symptoms were easy to manage if I took arthritis strength Tylenol 30 min before the injection. That strength of Tylenol lasts 8 hours, instead of 4-6 hours. It got me through a full days work, or full nights sleep. It wasn't very long before I didn't need the Tylenol at all.

The Betasron nurses are very good at working with you to get through things.

As I said, all of us are different, just wanted to give you something to ponder. If you have any questions, feel free to ask me.

The interferons all have around a 40% success rate in either preventing or lessening the effects of an exacerbation. Those chances aren't great as I often think about the weatherman saying that we have a 60% chance for rain the next day. 60% chance? With those chances, I expect rain! In that same sense, I expect another exacerbation unless I'm very, very lucky. Tysabri does have a much higher success rate. I believe it's somewhere near 60%. Still, we're still talking the odds being near the toss of a coin.

Choice in treatments (CRAB drugs vs. Tysabri) all come down to chance as nothing is guaranteed. I've been on Avonex for the past eighteen months since dx'd. So far, so good. Has Avonex prevented an exacerbation for me? There's no way to say for sure. All I know is that the manufacturer, Bio-Gen, makes good money off their 40% chance.

I heave read all of the pros and cons concerning Tysabri. Given that Avonex might be working for me as I haven't had an exacerbation in eighteen months, I'll stick with it. My reading has caused me to think in terms of using what appears to work for me now, then should things get out of control, save the best for last, the Tysabri.

Betaseron is Interferon- 1b

Avonnex & Rebif are Interferon-1a.

They are manufactured differently. Just adding to what lila4now wrote about hoew people respond differently.

Interferon beta-1a is a drug in the interferon family used to treat multiple sclerosis (MS).[1] It is produced by mammalian cells while Interferon beta-1b is produced in modified E. coli.

http://en.wikipedia.org/wiki/Inter...

I have been on Rebif for four years. I have spoken with alot of people who feel that the side effects are bad. I think that when they happen, they can be, but for me it is rare. I think that one thing we have to ask ourselves is "what is bad?" Every couple of months, sometimes more, sometimes less, I get the chills the night of an injection. They are bad, last for way more that one hour, and really make me ache. But then there are many, many injections without any problem at all. I did not get them when I first started, but I don't know if they would have been bad enough to make me want to change.

It sounds like you have been put on several drugs in short time, and I hope that in between your body really had time to get away from each one. You don't mention it, but have you been assured that all your vitamin, iron, calcium, etc, levels are good?

I would say that this is not something you will pick the right drug for and you will find the cure. You have to be comfortable with the medication you are taking. There is alot out there from LDN to Tysabri, and everything in the middle.

Are you looking into diet and nutrition? Supplements? There is alot you can be in control of that will help your body.

Sometimes we feel like we have to make a decision and rush to get something in, like we have to have a "MS Drug" in us this minute. I would urge you to take your time and make a decision that you are happy with.

I am currently having Tysabri suggested to me. I hollered for a couple people's help here. If you want to check the thread "hey EPagain or NNY11" you will find some valuable material on alot of things to take in to consideration.

It is a big decision, this is a long trip, so I think it is important to keep in mind that we have alot of livimg left to do, and to pick what we feel is the best option now, as well as what we might want available down the line.

Like I said, I am at my own crossroads, so I know the feeling. I wish you all the best. There is so much out there to know and digest, and it can be so overwhelming, but I think that it is the right thing if you feel it.

Good Luck.

The interferon class of drugs I think is closer to 33% for reducing the number of flares, and Tysabri is around 70%, which is more than twice as effective.

There are potentially serious side effects for Tysabri though, from brain infection to anaphalactic shock after the second infusion. Its a newer drug. PML is really rare though I am reading that the risk might go up the longer you take it, so I dont know what the research will say for people who expect to say on it for the next several decades, or what the long term effects will be. That is why some doctors are hesitant to give it as a first line of treatment even though it is more than twice as effective, sometimes* more tolerable and more convenient.

Thank you everyone, you have given me a lot to think about!

To answer a couple of questions for playmisty: I get my blood drawn regularly (every 3 months) because I stayed in the study, just not on the study drug. So I get blood tests, neuro tests, ekg's etc. So far everything checks out fine each time. I have eaten a well balanced diet my whole life, but since dx, I have tried to educate myself on fine tuning things. I take supplements as well. The reason I was on Avonex only 3 1/2 months is because I was sick 4 days of the week. Not the kind that has you still being able to function. I waited 5 months before trying the study drug, of which I was only on for 6 weeks. Of course, we don't have confirmation that I was on the actual drug (double blinded study), but when I started having issues, it was pretty evident I was on some level of it. I knew I needed to stop when I started losing weight due to loss of appetite and diarhea bad. I struggle to keep weight on as it is. It was 2 months later that I started the Copaxone. I don't think I am in a hurry now to get on something else. I definitely will take my time with the decision.

You have all given me things to talk over with my neuro as well as read more about myself ... thank you all for your time!