Thank you for adding this information.

I agree with you 100% about your live = your choice and want to thank you from the bottom of my heart for trying this therapy. I hope that it works wonders to stop your disease in its tracks.

I have been very happy with my experience at Hopkins. Wishing you all the best, Jules

Thanks for posting all this information, Keri (and others). I haven't researched this enough to make any comments . . . but I will be doing some digging around, purely out of interest sake.

Keri, I guess my only concern is what their take on this is, with regard to having been on Tysabri? If I recall correctly, some people who only took a few Ty infusions ended up in some sort of rebound (disease escalation) process when they quit, and then for you to jump so quickly on something else that is experimental and aggressive. Have you talked about that aspect with them yet?

I wish you well, and will pray that this is your ticket.

Cherie

Edited to include:

Keri, marcstck is a member here, and seems to know quite a bit about this treatment. You might want to contact him by pm, if he otherwise doesn't notice this thread.

I've been told that but I am no longer a member of that forum. Someone will have to point that person here.

Cherie - you do make a good point and you're right - it is a concern....one I will definitely speak about with the docs I meet with shortly. As for the comments about people having negative effects from stopping Ty so soon - there is so much we don't know about what was reported (such as - did the people go on another DMD to help slow progression - or did they not - that could be reason for more lesions). Also, those who showed the most new lesions, were on Ty for 2 months - and Ty could take much longer than that to take effect fully - thus, the new lesions might have nothing to do with stopping Ty. Of course - it's just another one of those sucky "we don't know" things about MS. Lovely, huh?

As for how long to be off of Ty before having HiCy - JH told me at least 4 weeks. I figure that by the time I am receiving treatment - it will be longer than that even. I meet with the people at JH 4 days before my 3rd treatment - so I am hoping they will give me guidance about whether or not to go thru with it. I'm guessing they will tell me to do it - b/c we do not know how long insurance approval will take - so if it takes longer than 6 weeks, then I'm w/o treatment for longer than I need to be - and if it takes less, well that doesn't mean I must start right then, I can finish out my waiting period obviously!

By the way - I had a MRI right before my second tx - and I had 2 new lesions at that time. So...who knows anyway.

Okay, many more of you to respond to...just spoke to Cherie first as I know she cares so much and I wanted to take her points to heart and think about them and respond.

I am still trying to take down these dumb steroid pills. they are horrid

Need to also take headache meds as my head is spinning right now.

Hope everyone is having a pleasant start of the weekend - and for those living in the US - hopefully you have a nice 3 day weekend!

~Keri

Keri

Thanks for the information! This is definitely interesting!

I don't know how you are doing the oral pred! I cannot tolerate it even as a taper after IVSM! Your doc must be a masochist!! Or too busy to bother with you...not sure which! It's too bad you couldn't have gotten to solumedrol shake. I've heard some people say it's not too bad but much better than what you are doing.

Shoot, you could have done the IVSM at any hospital outpatient clinic! That's where I do mine. My doc calls it in, and they get me set up same day!

Hope you are feeling better soon! I am still recuperating from my last relapse...they seem to last longer and longer.

How far out from your infusion were u given steroids. I had it on 20th. Much worse. Refused by nuro and er.

Will get back to u or your treatment. I've done massive reaserch on it. I want it. I many not qualify but have to try. My life - my risk. I'll take it and I'm not scared.

Yeah, the oral pred does suck big time. it takes forever to get the ten pills down (yet, I take about 6 pills every morning and then at night of other things - and have no problem even downing them all at once!). I also have a massive, massive headache and I dont know it it's because of the flare or the steroids.

I wanted IV treatment - they didn't move on it fast enough. Last time I asked to do it in the hospital - so scheduling would be easier - the docs office looked at me like I was nuts - so I made a million calls and still couldn't get it done. Thus, home based service.

Doc wanted the oral stuff - liquid form - but no luck with that either. I guess I can call around and find a pharmacy with it and have doc call that pharmacy instead. I don't know that many pharms carry that high of a dose in stock

One gram of oral pred is agonizing, as I'm seeing very quickly. I need to find something to eat so that I can start on my second half of today's dose....it takes me an hour or more to get them down. Ugg.

Sheena - my last infusion was May 9th. My next is June 6. Though I meet with Hopkins before that...so we shall see.

Sheena - it can't hurt too much to just send your records to JH. I can give you the info you want. I can also point you to a bunch of blogs of people who have done it - in fact: www.chrishasms.com. He has an active blog - and has the link of another woman who just finished the tx. I believe he had it in March and is doing well. Other woman I know just finished 3 weeks ago or so - is home and doing great thus far.

Was it you that said your doc won't give you steroids? Ugg, I get my posts confused. I'd of course find a new doc at all costs - and/or demand the neuro give you steroids or explain why he isn't when it is shown that many people respond to them and it helps stop a flare sooner than when not treated (depending on sx of course).

~Keri

Av8rgirl, I will see what I can do in regards to the other pilot.

Please Pm all u have - pain is a little better at moment or could not post - still not much. Yes, ref steroids - it was me refused - even hosp refused - they had a stupid PA seeing me - 6 hrs later said it was too soon after infusion. But, neuro said I was on highest treat. he could give - didn't tell about time period , if there is even one. Basically neuro refused to give any steroid even in future. He is major Ty but ty does not pull one out of relapse - we all know that. JERK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tks so much

Hi Red,

Have you actually gone thru this procedure yet? I recently contacted Johns Hopkins about this for my 29-year-old son.

Thanks,
Red