Ivig..I am not sure why. I know it is not approved for ms in Canada. But either is Novantrone, it is used off label. I suspect it is economic. Ivig is very very expensive and in short supply. Because its an IV drug it falls under OHIP(or provincial health care plans). They would have to have pretty good data showing efficacy before they will approve it. A pile of us on IVIG would strain the system.

I had an online conversation with MArk Freedman about it 4 years ago and he was hopeful a form of IVIg was going to have a clinical trial in Canada, but never heard any more about it.

I asked my neuro to try Ivig, but he stated there was a study coming out that refuted its effectiveness, so no go. I do beleive they are trying it on pediatric ms patients instead of steroids though.

I am not sure at this point whether i will qualify for tysabri. It depends on whether or not i have a flare in the next year. No flare this year-you would think that would be good news-but its not really. No flare in 2 years means likely secondary progressive rather than relapsing progressive. Relapsing progressive would mean i might mean tysabri criteria. However, i seem prone to infections anyway, so probably not a great choice.

Hmmm . . . I agree then, that it might not be the best option for you.

Thanks again Dayle and Cherie.

Cherie

Hi Dale, nice to see you. So Sorry about your DD. I hope things turn out well for her at her appointment, but that you all get answers. The not knowing is so hard.

Let us know how it goes, OK? I'll be keeping my fingers and toes crossed for you.

Best Always,

Hi Dayle, Cherie and Sally, and to the others who I don't know

Hope you don't mind me jumping in here, (Saw my name mentioned) I am also from Canada

Just wanted to say I was on IVIG for 5 years for another neurological condition and before my MS diagnosis. I have had MS symptoms for years now that I think back.

My MS was quite stable during the time I was getting the infusions but I feel I have gone downhill since . I would love the chance to try it again for MS just to see how I would feel after several years off of it.

I would also like the opportunity to try tysabri but that could be some time, we are so cautious up here and I suppose that is a good thing.

Just my 2 cents.

Hi Patricia . . . another Canuck, eh? Glad to see you found your way here too!!!

So you did have access to IVIG in Canada, but for another condition? If so, it would seem we could probably get it for MS, off label. (I am on LDN, off-label).

I like caution too . . . but am glad that there are brave souls out there who are willing to pave the way for us more conservative types.

Cherie

hi dale!

Are you eligible for the MBP trial that endure is in? Seems like such an easy treatment---no shots!

Too bad you have to wait so long to get DD in for an appointment... ---how is she doing in the new school year? Any improvement in attitude? That's such a carpy age for mother/daughter relationships. We can NEVER do anything right, it seems! grrrr

If you need a phonecall, send me an e-mail. I enabled e-mail contact at this site, or a PM at the MSsucks site---ok? I'm always available to be griped at, and you have plenty to gripe about! hugs-

Patricia, Hi my Friend. How are you doing?

So glad you are here. I've missed you.

Hugs,

It is reserved for cases of Guillan-BArre(sp), mysathenia gravis, hashimotos, and they are using it in pediatric ms. There may be a few very rare situations where someone with ms might get access to IVIG(pediatric, and post-natal relapse prevention), but according to Dr Freedman it is not generally available off label for ms.

I should pursue at least finding out if i qualify for mpb8298. I cant do the fTY one, due to Novantrone usage, and history of UTI's.

My dd is not doing well at all Its not so much attitude..there is something seriously neurological going on. She has been taken out of school this week, probably next and may not get to finish the semester. Her appt is Nov..but we may be looking at hospitalizing her on Monday.

Would love to hear from you as always

Hi Dale,

I receive IVIG here and I've got the track marks to prove it.

I wish you could find a doctor there who was willing to prescribe it. I'm not the only one here either (nor am I a baby or baby-producer ) So sorry to hear of your challenges with your daughter. Wishing her, and you, the best.