long time no see
 

Good to see some familiar faces. Its been a rather rough year. My dd is sick-something neurological/psychiatric and scaring us half to death. Waiting for an appt at sick kids beginning of Nov witht he pediatric ms specialist.:(

I'm on no meds right now. Not much for me as i am in category limbo. Am i rrms or spms or rpms..the debate goes on. It makes little difference on my day to day life-but whoah, the labels make or break a drug deal.:cool:

Hi Dale, welcome back.

Funny you should be here at this moment. I had just posted on the thread about the autologous stem cell transplant and said sometihng to the effect that you had considered it, or had actually tried it.

Welcome home, my friend! I wish you had the options for meds in Canada that we tend to have here.

Hi Dayle, great to see you and sorry about your daughter having medical problems! How long has it been going on, all summer? I cannot imagine your worry and I hope for the best possible outcome to this.

Hi cherie, pardon my ignorance here :) what kind of options do you mean for meds?

Hi Dayle, nice to see you again. I didn't realize you are Canadian, and/or that you didn't have a category yet.

I was going to ask the same question of Cherie, endure . . . I think we have the same options here as in the US. :confused:

Cherie

I think Cherie is likely thinking about availablity of IVIG (which she and I have discussed). It is not available for Canadians with ms. Also tysabri has been held up with health canada and hospital ethics committees..i know a friend who was in the trial is just getting back on the program this week. It will be more limited here at least for now.

But we do have access to the MPB8298 trial..which is not available in the US yet.

Just saw this and thank you dayle for answering the question. It was exactly what I meant but I did not want to give too much personal information that dayle had not given me permission to share.

Thanks for the clarification Dayle and Cherie.

Tysabri is pretty new to the scene . . . so I'm not surprised that Canada is not ready to move forward with it yet. I've heard (on other boards) that it is expected to take less then the usual (2 yrs ?) to get it moving here though . . .

You wouldn't be a candidate for that treatment though, would you Dayle (without a confirmed MS category)? Last I heard, it's approved for active Relapsing MS, and only after other therapies have failed . . . :confused:

I didn't realize we didn't have access to IVIG. Could someone explain what that is, please?

Thanks, Cherie

Sorry. I've gotten much of my information about the Canadian Health system and what is available for MS from Dayle and Patricia2. Haven't spoken with Mark Freedman in a little over a year. He, at that time, said that Canadians had access to most of what US citizens did for MS care but Canada Health was watching some of the newer trials longer and more closely before adopting them. IVIg...not sure why.

And I think dayle has a firm MS diagnosis but with the degree of illness this year, they have not yet decided where she has settled in the spectrum. I will let her give details of the broad range of therapies that have been tried.

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.:confused:

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. :confused: (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. :D

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...:mad: ---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.

Hi DB:

So they are using it at the centre out there? How are you responding? Which form of IVIg is it? Dr Freedman had stated they were working on a promising form- a newer class. I was hoping it would get to trials because my osteo is so bad i really really don't want to risk steroids again. My neuro mulled it over, and told me a recent study was disappointing and that it would not be available-but i cannot find results for any recent ivig studies, so i don't know what the heck study he is referring to.:confused:

Yes, I know a few people who are getting it in Canada for other conditions such as Dayle mentioned,

Guillan-BArre(sp), mysathenia gravis, hashimotos, and they are using it in pediatric ms, also CIPD and MMN (multifocal motorneuropathy) which is what I was originally diagnosed with.

Hi Sally, I have missed you too.:)

Maybe if enough of you from Canada can share your experiences, Dr. Freedman would have to listen and effect some changes in Health Canada's treatment protocol. I'm about due to contact him again so if I need to put in a word...just let me know

sure then, see what the two of you can do ;) .... thanks and good luck!

Welcome back Dayle!! It's great to see you and so many more familiar names. But, I'm so sorry to hear about your daughter's problems. As if you don't have enough already to worry about.

Take care.