SPMS

ladystewart · Posted: Wed Jun 18, 2008 2:44 pm Post subject: SPMS

What to do now??
I copied info I entered previously.

[/quote]OK-- I just got off the phone with Dr. Hammond and I was told that Revimmune is not very effective in people with SPMS. I am soooo finished now. I was diagnosed with RRMS and he said they are using RRMS patients. So if I had the treatment when diagnosed RRMS (2002) it would have been better????????? Rolling Eyes

I have to wait until I am peeing/shi---- on myself??? So I have a husband and 2 chidren and they suffer because I can do nothing now for them!! sorry---venting--UGH

GOD help. My mother had MS and I am worse. Been dealing since I was 12 years old. Stemcell transplant??

RedPenguins · Posted: Wed Jun 18, 2008 4:05 pm Post subject:

Lady - did Dr. Hammond review your records or was this just based on you telling him you were dx SPMS? I would have your records sent and reviewed......doesn't cost anything....and you never know. I read somewhere that JH was going to do a study on SPMS in the fall - but I'm not sure - so don't quote me on that. They definitely want people who are showing some activity on their MRI - do you know what your last MRI showed? Though, I believe my last MRI did not show enhanced lesions - I am still classified as RRMS. When was your last "relapse"? How long ago did they classify you as SPMS?

Don't give up. Are you on anything right now?

~Keri

ladystewart · Posted: Wed Jun 18, 2008 5:03 pm Post subject:

Dr. Hammod and 'his team' reviewed my records. My last MRI was 5/27/2008 and I have a computer disc of the MRI. He told me maybe in 6 months--I am "out of wait".I was in tears when I spoke with him!!

I am on Copaxone right now----been on Rebif, Novantrone, Tysabri, IVig. Nothing workiing Exclamation

rainer · Family Elder Joined: Jan 18, 2008 Posts: 219

from page 2 of "waiting for an appointment" thread.

susan · Posted: Fri Jun 20, 2008 8:34 am Post subject: SPMS

This was accurate, but things have changed; I spoke w/Carrie again June 18th and she indicated that they would be tackling SPMS in the winter now - SCREAM

ladystewart · Posted: Fri Jun 20, 2008 10:54 am Post subject:

Hi Sharon,

It was a pleasure speaking with you again. As we discussed, I think it would be a good idea for you to follow-up with your local neurologist regarding whatever treatment options there may be for you. Should we have good evidence supporting the use of high-dose cyclophosphamide in progressive multiple sclerosis, we will contact you. Also as other trials for progressive MS open up here, we will inform you so you can decide if you would like to be a part.

Let me know if you have any other questions.

Best wishes,
Ed

What Dr. Hammond sent me today(6/20/0 Cool

SCREAM!!!

Kyle · Family Member Joined: Jun 10, 2008 Posts: 68

mrhodes40 · Family Elder Joined: Sep 24, 2004 Posts: 385 Location: USA

Hey, if you have SPMS WITH exacerbations treated with prednisone and you've failed interferon therapy, according to the MS Quarterly report they are recruiting for a stem cell transplant with cyclophosphamide first to knock out the immune system.

The article did not mention location, but there were extensive exclusion criteria many related to people who have no exaerbations and no inflammation (like me).

Inclusion criteria are:
-age 18-55 inclusive
-diagnosis of MS definite by poser criteria
-inflammatory disease despite adequate interferon therapy. Inflammatory disease is defined as either MRI with gadolilnium enhancing lesions or clinically as acute relapses treated with IV solumedrol. Failure of interferon therapy is defined as 2 or more clinical replapses with documented neurological changes within one year of the study (note relapses must have required treatment with corticosteroids). Failure may also be defined as one relapse with evidence on MRI of active lesions (ie Gd enhancement)

Exclusion criteria were too numerous for poor me to type, but mainly it looks like if you are PPMS, have no inflammation and no exacerbations, would possibly get pregnant or would be upset to find you are sterile after treatment then not for you.

The contact name for the study is Kathleen Quigley RN BSN MBA ( hmmmm, a nurse iwth an masters of business administration, I bet they are looking to set up some kind of protocol) and the number is 312-908-0059.

I offer this not making any claims about efficacy or not suggesting that it is "equal" to revimmune because the specifics of how this treatment is done vs revimmune is not information I would know, nor is there adequate data on revimmune or this treatment to make a comparison, but I offer it as a possible option if you fit the criteria.

cheerleader · Posted: Fri Aug 08, 2008 4:20 pm Post subject:

Thanks for that info, Marie-
Hope it can help LadyStewart and others....
I googled the phone number and got this:
Dr. Burt and Dr. Marmont, Stem Cell therapy for autoimmune disease
Northwestern University Medical Faculty- Immunotherapy Dept.
Chicago, IL
http://www.nmff.org/clinicaldepts/department.asp?id=48

AC
_________________
Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter

mrhodes40 · Family Elder Joined: Sep 24, 2004 Posts: 385 Location: USA

Thanks for figuring that out AC! Maybe it'll help someone and they can add their experience too....

I'm watching everyone with close attention and look forward to seeing some consistently postive results with some of these approaches.
marie

ladystewart · Posted: Sat Aug 09, 2008 11:09 am Post subject:

Thank you all. I do not always reply but I do read!!

Kyle · Family Member Joined: Jun 10, 2008 Posts: 68

Thats great news for people with SPMS!!

I didn't know SPMS had exacerbations. But I know someone who went in for this procedure about a year ago, he is RRMS. He said he is having another attack unfortunatly. Hopefully it's not really an attack and just some old symtoms flaring up.