I have been trying to get a handle on the revimmune idea. I have had MS as well as RA now for 17 years and after trying many different approaches, I continue to deteriorate. I am already probably a EDSS 6: I use a cane all the time now and am ready to try something more drastic than Copaxone and methotrexate and periodic methylprednisolone and antibiotics (not an approved therapy but interestingly copaxone is trialling minocin with cop as a combo therapy). Antibiotics helped me with many things like energy levels, but I continued to progress. It's time to do more.
I like the revimmune idea because it is a brief intervention with the body being allowed to function normally immunologically afterwards. That means healing can take place in normal ways. (Did you know it has been known for a long time that RA joint healing is impaired by anti-inflammatories?....but the poor patient can't live without them so the doctors give them because it is the best choice. I have RA too, it sucks also!)
My guess is that even though you can't participate in any other trials after HDC you could still do another therapy if needed cause your body is normally functioning afterwards. THAT is a deal MAKER for me.
I was very interested to read the notes in this forum and am interested in the source for some of the success rates people mention in passing. I found the studies below and other similar ones that seem to suggest that for some people it is only a partial treatment with ongoing disease activity.
Now that should not be a deal breaker necessarily, but since some folks seem to believe they were told or heard that 100% of people get 50% better (or maybe I misread the quote), I hoped that people who heard of better results or who know more about it than I do will weigh in with what they were told.
Here's a few studies I found:
This study is on treatment of SLE with HDC. Not all these patients reponded well. Some had no response to therapy, some partial, only a few had what was termed a complete response. SLE is a severe disease and can affect organs essential to life so this is not exactly the same as MS. (WHy did JH choose MS for it's flagship study? is it because we have better survival rates because we are generally healthy?)
http://www3.interscience.wiley.com/cgi- ... /HTMLSTART
this study was on a variety of autoimmune diseases with good results except a couple of patients died form autoimmune disease (they had severe life theratening kinds) Most did really well.
A JH study on severe aplasitc anemia using HDC. The results for SAA look like they are the most consistently positive.
http://bloodjournal.hematologylibrary.o ... /100/2/704
And to everyone who is sharing with everyone else their experiences and information; THANK YOU so very much. I have a feeling you do not feel that well if in treatment with JH, so all the more reason to say thanks for you taking time to answer questions from people like me who are just getting on board!
Man, once you kind of decide to do something lke this it is hard to contain yourself. Not only the MS better but that damned pain from RA gone too??? it's beyond a dream. Sign me up LAST month.....