hi melanie, i actually brought the article to my neurologist, he said he has tried it on a few patients with no negatives. there is a process before i can get started. i need to have another mri, blood test to be sure i am jc negative (tysabri tx can cause pml if positive). i did not now details of all these things so i looked up on google. then hopefully my insurance will cover. i have spms and am feeling progression, even though last mri showed no new lesions but i have many already. i am expecting nothing to change how yucky i feel, but hopefully can try to stop further progression. was on cellcept for 1 yr and steroid infusion for 6 months, no changes, except bad. trying to be a miracle believer. connie

Hi, I have PPMS and am currently on copaxone to hopefully slow the progression. My nero recommended this when Avonex wasn't working. According to the nero copaxone being a older type drug has more background information concerning side affects. Both tysabri and gilenya have been linked to a couple of deaths. If copaxone doesn't work for me then the nero said I will need to decided which to try next. Hopefully this is alittle helpfull to you. Bernie

Last visit wit hmy neuro, she suggested Tysabri as an option for a next course of action. Right now everything seems to stabilized with me, or at least for the moment. I do not miss the drugs and chemo like when I had the Novantrone, but I also realize that I cannot afford to lose anymore of what abilities I have left.

I would look at Tysabri. If I remember correctly, your neuro did not recdommend Novantrone. If I new I was going to slip any further, I would take Tysabri tommorrow. Copaxane did nothing fro me, I would go for the "hard stuff".

You are right Steve. This clinic stopped doing Novantrone - not sure why, The other second opinion clinic I went to said they are doing a study on Tysabri for spms and you have to be able to walk 25 ft. I can't walk. So need to speak with my neuro before she leaves, She did not mention this.

Thanks everybody!

Melanie

Any word on your contemplating either Tysabri or you previously mentioned Gileyna?

Hi Steve. I was thinking of trying Tysabri but my neuro just informed me she is leaving. I am trying to see if I can get into see her before she leaves next month. So it's up in the air. Trying to get help is just a never ending series of delays and twists and turns.

I just read that someone taking Gilenya just developed PML. They were a former Tysabri user.

I had to have an echo because of a possible 'heart murmur'. Recently. Don't believe anything is wrong but Gilenya is a scary thought. But so is Tysabri. Especially at this stage. I needed it years earlier

So things are still on hold and who knows what is happening with the MS. Thanks for asking. I'll keep you posted.

Melanie

Melanie, it sounds as though you have PPMS. Gilenya is for RRMS. Tysabri is only recommended for two years because of the risk of PML. I am in a study for SPMS and I have to be able to walk 25 feet with my walker.

I have started my dosage and don't know if I am getting the actual RX or the placebo! I hope your Neuro can answer your questions. Let us know!