HDC Research and results thread

A board to discuss Revimmune as a potential therapy for multiple sclerosis

HDC Research and results thread

Postby mrhodes40 » Sat May 17, 2008 12:39 pm

Hi,
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.
http://www.annals.org/cgi/content/full/129/12/1031

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..... :lol:
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Loobie » Sat May 17, 2008 1:53 pm

Marie,

Best of luck to you. I can hear the excitement in your 'voice'!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby mrhodes40 » Sat May 17, 2008 5:23 pm

Yes I have been on abx for a long time and they helped but I still progressed so I have to look at something else now. There won't be much to save if I do not find something soon since I am edss 6, I am pleased that revimmune is a reversible process, in other words you are done in 4 days and the body is not hampered any more by immune suppressors. That's good news!

I see on one of the studies that RA was well treated in a case mentioned in the immune diseases study. That is really great for me with both diseases. This year for the first timeI had a really BIG flare of RA....it was bad bad news. The pain made my legs collapse unexpectedly. GOd save me from such a diabolical combination of diseses!

I plan to call Carrie Monday and see what I get for feedback.
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Lyon » Sat May 17, 2008 6:54 pm

.
Last edited by Lyon on Mon Nov 28, 2011 3:11 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Jamie » Sun May 18, 2008 8:58 am

My grandmother had RA.

Eventually years of pain drugs and steroid caught up with her and she died of heart failure.

She was truly a soldier, both knees replaced, got back bowling (crown green not ten pin!), doctor told her to stop exercising as her heart couldn't take it.

She told them 'you'll have to carry me off that bowling green' and they did, 18 months later.

Her view was, another 12 months of just sitting in her house or living life to the fullest possible (she was in terrible pain constantly from the RA) and perhaps not living as long was no decision at all.

If you do get to do this and it works on both your diseases you've won the lottery.

Good luck.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby mrhodes40 » Sun May 18, 2008 11:40 am

Indeed a life partially lived is not life at all. Kudos to Grandma! My Mom has RA too and she lives well with it. The copaxone I take for MS really controls my RA pretty well.

MS really sucks. But RA is no picnic either.

Lyon, I hope your sweetie does well on tovaxin. Is there a placebo arm?

I also do not mind being an example,but I was diagnosed in 91. We didnot even have avonex yet. I did the BBD fish oil and stuff like that. I did really well for 6 years and could stll jog til then.

Really the treatments available up untilnow have been so toxic with such a marginal success rate I was not that keen on them. If tovaxin was available in '95 I'd have done it in a heart beat. Unlike other kinds of treatments it leaves your immunity kind of unimpaired.

It is what I like about the revimmune story too...

I know I read somewhere in this forum that people are gettingdecreases i EDSS scores. I know the JH endpoint for success is a 40-60% reduction in symptoms. I expect that if I do it I will get some of that as well.

Even if it "only" stopped my RA...Holy cow even that would be worthwhile.
thanks for sharing your ideas
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Loobie » Sun May 18, 2008 7:04 pm

Marie,

You are ready girlfriend! Pack your bags! A chance to get relief from both of those diseases has to lead to so many fantasies. Hell, I'm just a 4 and I get those all the time and I don't even have RA. I guess for you to just imagine life without would conjur up some doosie thoughts of 'what if?'. I hope you become the poster child for this procedure. God Bless.

Lew
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby chrishasms » Mon May 19, 2008 6:42 am

OK Let me clear up some of the confusion. HDC is even given differently than what ANYTHING with HiCy has before.

SPMS or later- progression stopped.

RRMS- 40% or greater improvement in EDSS scores. It is why the trial will have an endpoint of 40%.

I wish I would have asked more when I was there but I was told by the folk at JH that they are doing it differently than other HiCy trials. I figured people would just be happy to get better. I should have got clinical data while I was there lol.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

!

Postby mrhodes40 » Mon May 19, 2008 4:51 pm

Thanks for the feedback Lew and Chris!

I called Carrie today and asked more about results and numbers of MS patients treated.

The scoop is there are 20 MS patients who have been treated so far. About 270 people have been through the protocol if you include the SAA and other kinds of autoimmune patients.

The overall results for the 12 MS patients in the original paper was an 80% reduction in disease activity--and I prompted, you mean reduction in enhancing lesions on MRI? and she said Yes....
and a reduction in EDSS scores to an average of 40% improvement.

The abstract for the paper done in that first group of 12 people is found here
http://tinyurl.com/52ucpu

I asked if the patients in the first study had remained at the same success level and she said one of the things they learned with the earlier patients was that people do tend to need some kind of assist to keep the immune system from reverting so they are now recommending adding copaxone at the one month post treatment mark to keep the immune system influenced toward suppressive t cells thinking this will result in better outcomes.

From a study standpoint, anything below 30 patients is too small to be "significant" because individual peculiarities have too large an influence ....as in a couple of unusual people who respond unusually poory or well can really skew the numbers.

I am still really interested in this but the numbers are actually really small at this point and I wanted to add this to this thread so people can see that.
It is not surprising then that the MS world is not head over heels about this treatment...YET! Larger numbers need to be treated and longer term outcomes documented. Some of us cannot wait (like me) and so will need to think hard about what to do.

Every one who does the treatment will be providing us a with a really good picture into how people feel about doing this .

Carrie sent me the stuff and I will see my new neuro on Thursday. SHe told me what to get from hims MRI wise etc.
She is really kind and helpful! She was interested in my dual disease situation....
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby chrishasms » Mon May 19, 2008 5:14 pm

Wow I was under the impression it was a good deal more than that.

Maybe I am one lucky SOB...and all the others.

I still think you should try like hell. Beats anything else being offered by the FDA.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby flipflopper » Mon May 19, 2008 6:10 pm

Good post Marie! I truly hope that Revimmune will have great results for everyone who tries it! But, it is important to know that it hasn't been tried on many people yet. This info is important for anyone trying to decide whether or not they would like to try Revimmune right now.
User avatar
flipflopper
Family Elder
 
Posts: 183
Joined: Wed Nov 09, 2005 4:00 pm

Postby chrishasms » Mon May 19, 2008 7:01 pm

I'm sure they have done more than 20 and something just ain't right.

There was only 20 when I went in there.

Please please please check that again. I just don't by that.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby mrhodes40 » Mon May 19, 2008 7:22 pm

Thanks guys that is why I posted it. There are a lot of people in treatment right now so numbers are rising even now.

It is also worth noting a lot of the ASCT studies have been done with pretty fair results Look up this one on pubmed using it's number:

PMID: 14556778

It would seem likely that the less toxic version that revimmune is would result in better outcomes and of course less mortality.

And the other studies on HDC for other autoimmune diseases show good results too. This one is on SAA

PMID: 12091370
There are lots of HDC reports actually in SLE also. That group has such severe prblems with their internal organs that they have more issues tolerating treatment. Interestingly it is usually the very sickest people who do this treatment, so that impacts the results. They still have pretty good success, which is amazing.

Overall it is not a deal breaker in my mind that it has not been done to hundreds yet. Didn't one of you guys say you are patient number 65? Perhaps there are 100 in the current group!
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby chrishasms » Mon May 19, 2008 7:28 pm

I was told by Steve Faccett of Virginia who was receiving this the same time I was - HE was told by the Docs close to 100 had been treated and all were getting better.

He didn't say it quietly and all the people around heard him so I had no reason not to believe him. Nurses and Dr. B was there too.

Someone is wrong here and I want to know who. lololol
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby mrhodes40 » Tue May 20, 2008 9:53 am

I am glad to hear that Chris :D , It is clear from reading this forum that people believe that large numbers have been treated and that the success rates are very high for those patients.

I was frankly shocked when she told me "20". I said that's all? But you've been treating other autoimmune diseases, how many of those patients? about 270 she said.

It's possible that she thought I meant how many patients have been STUDIED; as in how many are in peer reviewed articles. That number could certainly be 20 as the initial study was on 12.

I emailed today and asked for clarification.

I'm glad to hear the circumstances of where you got the impression there were so many more. I agree that sounds like the doc talking to the Virginian was certain of his facts and that he reported what he heard. something is not right. It certainly could be me! It would not be the first time, but am glad we have others who are better connected than I.

I started this thread to try to get to the bottom of the details of this treatment with research and facts to back up the claims loosely referred to throughout the forum.

I want this to be THE answer too! I want it last week........heck I want it 4 years ago. I could walk better then :lol:

Thanks for the information!
Marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Next

Return to Revimmune (cyclophosphamide or cytoxan)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service