Too afraid

I have had MS for 20 yrs now and about ten years ago took Betaseron but had horrible side effects and so I stopped and went med free for the past 10 yrs.

I just had 2 bad flares within 3 weeks and my new neuro gave me the option of which med I wanted to try. Well, Im not improving much and so now my doc is reeeeeaallyy pushing Tysabri. My thing is I am too afraid of this med and its side effects.

If a med has side effects, I usually get them. Doesnt matter what med it is. Im just already sick enough with MS, I dont need anything else to happen.

[emin21]

I feel your worries. I was on Tysabri for 41 months. Unfortunately I have the JC virus and Tysabri caused it to build the my system and in turn caused PML. If you're concerned about the side effect of PML please urge your doc for the test of the anti-body for JC virus. I wish you the best in the future and I hope that you explore every avenue that's available to you.

[Scooter24]

I have had no side effects other than a very slight headache after the first 2 and a few months where it felt like my batteries were going dead a few days before my next infusion. Have been on it for almost 2yrs now. I didn't handle avonex or copaxone well and felt terrible on them.

[rdmc]

I totally understand where you're coming from. I've never taken Ty, but have had allergic reactions to so many meds, many of them severe reactions, that I'm very wary of any new med.

If you usually do "well" with meds, and don't have reactions, or side effects, it's hard to understand where the fear comes from. But once you've been in the position of suffering severe side effects or reactions, it's a really hard thing to overcome. And as you say, you're already dealing with one disease, then to have to climb out of the "pit" you've fallen into from a med to treat it is a discouraging thing.

I know with each new med I try, I get out the epi-pen, and make sure someone is home when I take my first dose. So I totally understand the fear.

With Ty, I imagine getting tested for the JC virus would be the first step. If you don't have the virus, I don't think you have to worry about PML (I may be wrong...someone correct me on this if I am.)

Hope your flare resolves soon.

[0485c10]

I saw your post last night before emin21 replied and struggled with a response. Your query being too broad for me to know exactly how to answer?. Your in the drivers seat, you let us know how much info and what kind of info you want..

if that makes sense? recently someone posted she was starting tysabri didn't know much about pml, concerned what she should know, but really preferred to trust her doc...she was jcv-

LL60 answered it perfectly said that if she was jcv- & in the first year she had nothing to worry about. did not go into anymore detail, but if there was late breaking news, we would have had it and supplied it..but we didn't have any so i think that person got the information she was looking for....but we could have gone into much greater detail, we are capable of supplying it.

that was my dilema. i have much information--just not certain what is requested.

from your post betaseron side affects jumped out at me, so then 2 bad flairs with in 3 weeks. well the definition of a flair is new or worsening symptoms at least 30 days apart--so actually it sounded to me like it was one very bad continuous flair. as a person leaves the rr stage, recovery from relapses gets less and less. more like a period of visible activity which you haven't gotten out of yet.

then i'm not certain what side affects from betaseron were intolerable? Both beta & tysabri are immune modulators, but they act differently. beta modulates the entire immune system and it cause those flu like symptoms while doing it.

tysabri only modulate 1 piece of the imune system so flu like symptoms are not as big of an issue for most. some get headaches for the first infusions.

tysabari prevents adhesion to the blood brain barrier so the white blood cells which carry the immune system and MS activities can't get into the brain and create lesions.

to see a video of how tysabri works:

http://www.tysabri.com/tysbProject/t...abri-works.xml

betaseron, an interferon just loads extra cytokin cells into the immune system to attack instead of the myelin its mistakenly attacking---those extra cytokin cells cause the flu like symptoms..that i thought might have been the side affect that was not tolerable and forced you to stop beta. it shouldn't be the same issue with tysabri..

i'm not certain if you looked at the tysabri site, but there is much info there.

http://www.tysabri.com/tysbProject/t...abri/index.xml

i've had 39 infusions so far, but i never decide to use it for more than 1 year. at the end of the year i re-evalute the situation and decide whether to continue it for another year. Tinkerbell65 has decided she will use it for 6 months, she is jcv+, no one has gotten PML within 12 months unless they have used an immune suppressant in the past. then she is hoping btg-12 will have been released, which she may switch to. she is more conservative than me, she re evaluates ever 6 months, me i re evaluate annually.

[LL60]

enim21 - do you have PML?

psjsissy70 - my reactions to meds was why I went with Tysabri with my families blessings - well most of them. As my daughter said, if the risk of PML was one in a million, she would worry for me - but with the risk 1 in a thousand (which is what it was when I started 2 1/2 years ago, now that has gone up some) she wouldn't worry about me.

I had a horrible reaction to Copaxone which has some of the fewest side effects. I got septic and then had a reaction to the antibiotics they gave me, then had to switch to IV antibiotics. It took me weeks to reacover and over a year for the damage to totally go away. It was a strange process. I had tissure damage from the inside that left huge scaps on my skin that peeled off slowly. Neither my neuro or Teva said they had ever heard of a reaction like that.

So you just have to read read read and sometimes just take a chance.

And someone who said they totally left things in their doctors hands. Wow. I have had too many bad experiences with trying that route. But how great that you would feel that way about your doctors.