Tonight the Olhipie and I were watching the local news and they ran a story of a women from Utah who went to Johns Hopkins to be treated for severe Multiple Sclerosis. She is one of 44 patients to receive the experimental High Dose Cyclophosphamide, and may be the last.

I have put the link below for the story...if there is problems with opening it let me know...I just wanted to hear feedback and see if anyone had heard of this....

http://www.abc4.com/content/news/top...XMmYCXMTQ.cspx

Very interesting...too bad there's no funding...it's all about the Benjamins
Thanks for sharing this...I guess there's always hope!

I am not overly paranoid, but it breaks my heart pharmaceutical companies (they have bucks) have no interest in helping research that what will not benefit them. (ie - ongoing lifetime medication.) . When HyCy is done, it's done. I know it's not an option for me (PPMS does not indicate inflamation - that's why it is unresponsive to Interferons, etc) but it did help some RRs. Fampridine ($$$$$$$) has gotten FDA approval, a med. requiring monthly refills. OK, maybe I do feel a little paranoid and helpless. There's no incentive for big pharm. companies to find a stop to this madness.

This is the treatment that our Keri/Redpenguins had, twice. I haven't heard if the second time was a success, yet?

Chime in, Keri and let us know how you are doing.

Thanks, Sally

Tamiloo (and others!) -

I am also one of the 44 people who underwent HiCy at Hopkins. I actually did it TWICE. My first treatment was July 2008....and I remained in remission for a few months and then started having relapses. After reading as much as I could find and talking with specialists, I decided that it made perfect sense to try it again, as maybe I needed a second "reboot" to really knock the MS away.

In May 2009, I went back to Hopkins for a second round of treatment....

AND I'M DOING WONDERFULLY!!

I have now gone 10 months without any relapses - that is the LONGEST period I have ever gone - having needed steroid treatments every two to three months prior to this second dosing.

My MS was fairly aggressive and came on like gangbusters in January 2008. My doctors had warned me that it was unlikely that I'd ever go more than 2-3 months without a relapse. And they were right...that is until HiCy!

In July 2008...right up until the first HiCy - I had to use a cane to walk. Within weeks of that treatment, I got rid of the cane and haven't needed it since! My last steroid treatment was April 2009 - before my re-dose of HiCy.

I know many people will say "oh, it's only been 10 months, so you can't know for sure anything" - and they would be right....except that this 10 months is so strikingly different than the first 14 months of my disease.

I'm feeling fairly good these days. Occasionally I have some fatigue - but I must admit that I have sleeping problems (don't sleep well) and that could account for the exhaustion. I also have a near 3.5 year old running around at home...so that adds to it as well.

Check out the blog of Chris (www.chrishadms.com) - he also underwent HiCy. He is also doing MUCH better than before the treatment (though he still has some issues).

My last two MRIs (at 3months and 6 months post HiCy2) were free of any new lesions...this is also a change from my previous MRIs, which always had more lesions and active ones. I've had no activity with the lesions and some even show some healing.

I still worry nearly every day that I will relapse...it is a fear...every little moment of fatigue or vision issue reminds me of the MS. But in the meantime, I am LIVING. I hadn't been living in the 14 months prior to the HiCy2. This past October, I even rode 60 miles in the MS Bike Ride. I couldn't have done that without having had the HiCy.

Tamiloo - if you'd like to know more - you can do a search for "HiCy" - as I posted here about it a lot! There is also www.thisisms.com which has an entire forum dedicated to it.



~Keri

FYI - my insurance covered the cost of the HiCy both times - having approved the procedure within an hour of receiving the request!

Keri, I am so happy to hear your good news.

I will say an extra prayer for you, that this remission stays forever. God bless you.