A board to discuss Revimmune as a potential therapy for multiple sclerosis
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Multiple Sclerosis drug Revimmune receives FDA designation
Replies: 6
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MSUK » Tue Jun 28, 2011 6:03 am
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The U.S. Food and Drug AdministrationbizWatch U.S. Food and Drug Administration granted Orphan Drug Designation to Revimmune, Accentia...
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i didn't think they were using this anymore. Are they going to start trials again? I think the HSCT seems to be more promising that this.
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Last post by iKat
Mon Mar 17, 2014 12:43 pm
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Cyclophosphamide so-so verdict in progressive MS
Replies: 3
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MSUK » Mon Oct 07, 2013 6:10 am
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Patients with secondary progressive multiple sclerosis who were able to stay on cyclophosphamide therapy had a lower risk of further disability, but...
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Since the experts still acknowledge that the cause of MS is unknown, your hypothesis is as good as theirs, in my opinion.
On the other hand, some...
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Last post by 1eye
Sat Dec 28, 2013 9:23 am
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Symptoms right after 1st HICY infusion?
Replies: 1
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NewHope » Sun May 19, 2013 9:17 am
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Hello,
I am currently undergoing HSCT (Hematopoietic Stem Cell Transplantation) with Dr Burt in Chicago which also involves large doses of chimo -...
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Hi,
I don't have any experience with HSCT, but have read a bit about it. The expert seems to be George Goss, who did HSCT a few years ago and has a...
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Last post by plethora
Mon May 20, 2013 9:44 pm
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vitamin D?
Replies: 11
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RedPenguins » Mon May 25, 2009 5:49 pm
Does anyone know how much vitamin D (and what kind? d2 or d3??) the people who did hicy @ Rush are currently taking?
thanks,
keri
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Last post by dulceemira
Mon Apr 29, 2013 10:40 am
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HiCy in Europe
Replies: 8
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Pesho » Thu Feb 23, 2012 1:45 pm
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Hello, I'm new to the disease and the forum :(. I'm searching for a cure like everyone else and the things I'm considering are HSCT or HiCy. Just...
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see MSRC website for personal experiences on many of these treatments.
They are very risky and not to be taken lightly especially if your MS is...
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Last post by LR1234
Mon Jul 16, 2012 7:15 am
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cytoxan therapy
Replies: 47
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MNManWithMS » Fri Apr 10, 2009 7:55 am
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I've been all fo the FDA-approved drug therapies and received no positive benefits. My neurologist mentioned Cytoxan and I really like the idea of...
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Is there much difference between MS cytoxan therapy and the cytoxan therapy they give for breast cancer? I took cytoxan with adriamycin (and...
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Last post by LauraV
Mon Jul 02, 2012 9:54 am
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Last post by MSUK
Tue May 08, 2012 1:14 am
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Cyrevia (Formerly Revimmune)
Replies: 1
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rssugg » Tue Jan 10, 2012 9:17 am
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In December, Accentia Bio changed the name of their Multiple Sclerosis therapy Revimmune (HiCy or High Dose Cytoxan) to Cyrevia.
As the company is...
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I am interested in this treatment....seems like its very risky but has the best chance of halting the disease.
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Last post by LR1234
Wed Feb 22, 2012 4:10 pm
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Analysis of 40 JH HiCy Patients
Replies: 6
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Frank » Thu Sep 01, 2011 2:47 am
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Treatment of RRMS with high dose cyclophosphamide induction
CyclophosphamideBackground: Previous studies have described stabilization of aggressive...
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While everyone else was looking and hoping for CCSVI, Revimmune has been slowly getting their ducks in order and is poised to get on the market...
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Last post by rssugg
Tue Nov 22, 2011 7:31 am
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Is cyclo really going to help?
Replies: 3
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Grenaway10 » Sat Nov 05, 2011 7:30 pm
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I'm 19 and I decided to do cyclo and I have been home for 4days and was in the hospital for 9 to do the cyclo, but I am already having a attack! So I...
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Hi,
I don't have MS, but another autoimmune disease. I also had several exacerbations in the first few weeks/months following the HiCy. It is...
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Last post by criptastic
Tue Nov 08, 2011 11:23 am
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Gots me a date...
Replies: 4
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msmything » Wed Jun 01, 2011 7:18 pm
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Finally, after months of staff changes and screw ups I have a date to enter RUSH's HiCy program.
I'm over the moon, but now that it's real I'M...
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Oh, OK.
I was 48.
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Last post by criptastic
Thu Jun 02, 2011 10:02 am
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Hopkins video
Replies: 23
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Lyon » Fri Jan 21, 2011 3:20 pm
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Hi Linda,
I did Copaxone after treatment, from June 09 to early January 10. then I stopped bc I knew I wanted to get pregnant. I am on nothing now...
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Last post by RedPenguins
Fri Apr 29, 2011 8:36 am
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Immunizations?
Replies: 4
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Looking88 » Mon Dec 27, 2010 3:33 pm
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Does a person have to re-take their childhood immunizations after the Revimmune protocol?
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I found out that I will receive the first of my childhood ones in about a year, I want to be able to be around children in the future! (grandkids)...
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Last post by msmything
Fri Apr 29, 2011 3:34 am
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Tysabri and Revimmune?
Replies: 3
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Looking88 » Wed Jan 05, 2011 6:14 am
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Anyone have any insight on using Tysabri to bridge the gap until being able to get Revimmune treatment? Know of any problems going from Tysabri to...
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I had a few (2 or 3?) Tysabri treatments before doing HiCy. My last treatment was 30 days before I had HiCy at Hopkins.
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Last post by RedPenguins
Thu Apr 28, 2011 7:55 pm
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Starting Chemo for MS in 9 Days. Am I nutz?
Replies: 6
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Chris1967 » Sat Jan 15, 2011 11:56 am
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Chris here, was wondering if anyone could help. I am scheduled to start cyclophosphomide therapy in 9 days. Its a major infusion, four hours, every...
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I'm glad you are getting great information to make your treatment choices. I was given Cytoxan in 2007 during a particularly bad relapse. I took it...
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Last post by PatGF
Tue Feb 22, 2011 11:24 am
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HiCy Success Stories
Replies: 2
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Looking88 » Sat Jan 08, 2011 5:29 am
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I am having trouble tracking down the long term success stories of HiCy.
Most of the HiCy participant blogs only go for a year and then stop.
Maybe...
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Feels great has no signs of disease activity, either on scan or otherwise.
May I ask: how disabled was she before the treatment?
Thank you :)
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Last post by Algis
Sat Jan 15, 2011 10:36 pm
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What tests prior?
Replies: 12
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msmything » Mon Nov 08, 2010 6:03 am
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Hi everyone!
It looks as if I am accepted by Rush, for a mid january start.
I have 2 questions actually.
First is what insurance covers without a...
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I have myasthenia gravis.
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Last post by criptastic
Mon Jan 10, 2011 7:33 am
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HiCy and Mesenchymal Stem Cells?
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Looking88 » Sat Jan 08, 2011 7:24 am
Anybody know if HiCy treatment wipes out your Mesenchymal stem cells?
Seems it would be nice to be able to follow HiCy with Mesenchymal stem cell...
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Last post by Looking88
Sat Jan 08, 2011 7:24 am
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Accentia biopharmaceuticals announces strategic agreement
Replies: 1
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MSUK » Mon Nov 29, 2010 5:09 am
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Accentia biopharmaceuticals announces strategic agreement with Baxter
Accentia Biopharmaceuticals, Inc. today announced a strategic agreement...
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How is this going to effect the availability of Cyclophosphamide? It is widely used for other indications e.g. cancer, immuno-ablation in ASCT,...
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Last post by Frank
Mon Nov 29, 2010 11:11 am
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starting this week, few questions...
Replies: 7
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jackson233 » Sun Oct 03, 2010 2:25 pm
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Hi everyone,
I am starting therapy in the coming weeks and had a few simple questions about the therapy. I understand that my 'infusions' will take...
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Mediport is good. I've had it since 2001. Again, good luck and keep us (ME) posted. We seem to be the only active posters here for a good while!
Crip
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Last post by criptastic
Thu Oct 07, 2010 11:21 am
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Last post by ms_turophile
Wed Aug 11, 2010 9:18 am
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Any new information about Revimmune trial?
Replies: 3
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Frank » Thu Jun 24, 2010 4:49 am
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I just had a look at the Accentia website where the Revimmune trial status is still pending . Is there any new information about any advance or...
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I spoke with Dr. Harrison at JH, tey are not taking any patients for HI-CY at this time
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Last post by AJWANTSACURE
Tue Jul 27, 2010 1:44 pm
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Symptoms
Replies: 2
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AJWANTSACURE » Mon May 17, 2010 1:38 pm
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im headed down to the Mayoclinic in FL. in June to see a neuro about HiCy. I hope and pray I get it.
now i know everyone is ddifferent, on average...
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That is awesome you all are going to get HiCy. I have talked to Mayo Clinic about it and am supposed to call them back in July to schedule for...
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Last post by happytown
Sun Jun 20, 2010 8:15 pm
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My 9 month HiCy follow-up
Replies: 23
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mommasan » Thu Mar 26, 2009 6:00 am
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Had my 9 month at Hopkins. I should preface this by saying that my symptoms have increased over the last 2 months but no reactivation. I will list...
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I have decided to get this treatment also. I am so excited I can hardly wait!
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Last post by happytown
Mon Jun 14, 2010 11:34 am
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1 yr post HiCy (2nd round)...Great news!
Replies: 6
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RedPenguins » Mon May 03, 2010 10:26 pm
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Well, this board is mostly dead now...but figured I'd drop a quick update in case anyone ever stops by.
This week marks 1 year since I underwent a...
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Keri congratulations, having a baby is wonderful. So it took to rounds of treatment for you to see improvements? I'm currently in a clinical trial...
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Last post by ssmme
Mon May 31, 2010 11:56 am
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DENIED BY CHICAGO
Replies: 2
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AJWANTSACURE » Tue Apr 27, 2010 5:29 am
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because i have a brain stimulator, chicago will not accept me. I qualify in every other aspect.
They shoould haave done more research, because...
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Red - trried jh, they r on hold right now. trying the mayo clinic in FL
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Last post by AJWANTSACURE
Tue May 04, 2010 2:45 am
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cyclophosphamide for MS
Replies: 28
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amielzbth » Tue Mar 30, 2010 11:51 am
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My fiance is probably going to end up doing this. Has anyone here done it? Or is this Hici the same thing? Please let me know the side effects as you...
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Sorry if I sounded like a naysayer... You're absolutely right. My brain MRI's show no advancement and healing has to be encouraged I do feel some...
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Last post by belsadie
Sun Apr 11, 2010 4:58 am
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How Do I Get It????????
Replies: 3
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AJWANTSACURE » Tue Feb 23, 2010 2:43 pm
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plain and simple - HOW DO I GET HICY?
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First you have to want it! Sounds like you do! Research it like crazy, so you know what is going to happen.
Make a choice of how you want it. John...
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Last post by tashenoir
Tue Mar 02, 2010 5:30 pm
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3 month post hicy (round 2) update
Replies: 8
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RedPenguins » Mon Aug 03, 2009 11:16 pm
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Hi again everyone,
Well, it is with sadness that I report that things have been on a downslide for the last two weeks. My previous update, I was on...
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Duke University Hospital gives HiCy? As in duke University Hosp in Durham, NC? That is 20 min from me....guess i should get on the phone and find out...
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Last post by AJWANTSACURE
Fri Feb 26, 2010 4:11 am
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GoodBye Tysabri Hello HiCy?
Replies: 3
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tashenoir » Wed Feb 17, 2010 2:03 pm
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Just asking for prayers for I will be in Chicago on Monday for my consultation to get HiCy.
Thanks everyone and I wall let you all know, maybe...
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Best thing I ever did. I just came back from my neuro yesterday and I am 2 years out in March. No progression or lesions in 2 years.
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Last post by chrishasms
Sat Feb 20, 2010 10:58 am
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Chrishadms you tube video and facebook video
Replies: 11
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msisnotforme » Sun Feb 07, 2010 12:44 pm
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I am a friend of Chris who has sat in the corner watching how Revimmune and how CSVI is working. I don't really know how to post but I am going to...
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Great news about your foot Chris!!!! It sounds like Revimmune has really worked for you!! Chris I do not think anyone would disagree with you about...
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Last post by scorpion
Mon Feb 15, 2010 8:58 am
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HDC news
Replies: 3
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ElMarino » Fri Feb 05, 2010 4:33 am
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I hust saw this article:
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I'm telling you ... once CCSVI treatment gets up and running everywhere, the next is stem cells. I know they call this Revimmune ... but what it is...
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Last post by mshusband
Sun Feb 07, 2010 11:27 am
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UPDATE FOR REVIMMUNERS
Replies: 2
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chrishasms » Tue Jan 26, 2010 8:33 am
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2 years out. No lesions in 2 years. MRI yesterday clean with more lesion healing. No disease progression in 2 years.
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Yes, very good news indeed, congratulations Chris!
This section of TIMS has been very quiet lately. Thanks so much for coming back to post your...
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Last post by Axiom
Sun Feb 07, 2010 8:22 am
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Anyone heard Dr. Kerr is leaving Hopkins?
Replies: 2
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steven73 » Sat Jan 16, 2010 7:04 am
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I received a letter telling me that my next three appointments have been rescheduled with a different doctor so I called and was told he's taking a...
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Any updates Chris? Just wondering how you were doing.
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Last post by scorpion
Sat Jan 23, 2010 6:20 pm
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cytoxan user with questions
Replies: 1
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ldybug477 » Mon Sep 28, 2009 5:42 pm
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Hello forum! I see a lot of posts about the hicy dosage and I don't believe that what I'm doing is considered that.
I initially started almost 5...
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Hi Idybug, I'm sorry no one has given you any input, I for one, have never heard of this protocol.Maybe you could post this question in the copaxone...
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Last post by msmything
Mon Dec 28, 2009 4:34 pm
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Last post by deluxe_diagnosis
Wed Dec 16, 2009 4:04 am
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JH article on HDC
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Frank » Tue Nov 17, 2009 12:23 am
Thats so frustrating! Why is there no funding from the NIH or the health insurances (who would safe a lot of money if HDC gets approved)?
--Frank...
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Last post by Frank
Tue Nov 17, 2009 12:23 am
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so happ today!
Replies: 3
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mommyju » Thu Sep 03, 2009 12:23 pm
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My husband just got his first appointment scheduled at Johns Hopkins for December 09!!!
Wondering how long after his first appointment he will get...
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123
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Last post by chrishasms
Sun Sep 06, 2009 11:07 am
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How many at JH now?!
Replies: 43
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RedPenguins » Thu Jul 10, 2008 6:01 pm
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Ohmygosh - I can count 7 people, including myself, that are here in Baltimore right now receiving HiCy! I'm sure there are more - but these are just...
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We were in a similar boat as you. My husband was diagnosed just over a year ago. He had a rough relapse, and he wanted to get it earlier rather than...
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Last post by greenwave
Thu Sep 03, 2009 1:19 pm
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how long did it take for some of you to get in JH??
Replies: 5
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mommyju » Fri Aug 28, 2009 12:07 pm
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Hello everybody, my name is Juliana I am new to this board...
my husband has MS and we are trying to get him into JH for Revimmune treatment ASAP...
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Just got an appointment for my husband for December!!! Yeahhh!
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Last post by mommyju
Thu Sep 03, 2009 12:16 pm
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Schedule of Post HiCy Follow Up Appointments...
Replies: 3
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steven73 » Thu Aug 20, 2009 2:55 am
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I just completed my first year of every three month appointments. Are we supposed to follow up every three months for the second year as well?...
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My Neuro here in Alabama orders all my tests and he does my labs, EDSS and MSFC at his office then they fax all the results to Dr. Kerr's office. My...
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Last post by pvns2005
Sat Aug 29, 2009 7:09 pm
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Chris' update
Replies: 8
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chrishasms » Wed Jun 18, 2008 9:21 pm
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I got one up on my site.
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No nothing new to report really. I do feel like the disease progression has been slowed dramatically.
The more I watch this CCSVI stuff the more its...
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Last post by chrishasms
Mon Aug 17, 2009 9:55 am
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HiCy PPMS Trial
Replies: 2
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Sport » Mon Jul 06, 2009 8:57 am
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At my appointment with Dr. Kerr last Sept he mentioned that he would be starting a trial of HiCy with a few PPMS patients and he said that he would...
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so discouraging. thanks for checking into this. maybe stem cells is where it's at??
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Last post by indigoinmotion
Mon Jul 27, 2009 9:55 am
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My update!
Replies: 3
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RedPenguins » Tue Jul 21, 2009 8:28 pm
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Hi everyone,
Sorry, I haven't been around lately... (and geez, I missed a lot - especially the CCSVI stuff....gonna head over to that board in a...
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Hi Keri,
Great news!! I'm so happy for you!!
Can you tell me what your condition/symptoms were prior to the treatment?
Live it up, girl!!!
Indigo
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Last post by indigoinmotion
Thu Jul 23, 2009 12:34 pm
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CCSVI before HiCy
Replies: 5
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LR1234 » Sun Jul 19, 2009 6:59 am
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Hi,
Mel had hicy before having stents placed. I wonder if having stents placed and then trying to apply for hicy might not be allowed.
I wonder if...
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You are low on blood about 1 week. Then everything is pretty much back to normal within 2 weeks. I would suggest Revimmune first but the more I am...
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- 6240 Views
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Last post by chrishasms
Mon Jul 20, 2009 7:41 am
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Dosage?
Replies: 16
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LR1234 » Mon Jul 13, 2009 8:15 am
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What is the dosage given of the cyclophosphamide?
I found this article online and was wondering if the dosage is similar.
The objective of this case...
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This might answer your question:
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Last post by patientx
Fri Jul 17, 2009 12:43 pm
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Hi-Cy - where and how much?
Replies: 7
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MSGREG » Sun May 24, 2009 7:35 am
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Hello Everyone: Thank you for posting so many positive comments. It always makes me happy to read them and to know there is some hope to at least...
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Good good! Getting on with life is a good thing! I'm glad everyone is well. Good luck!
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- 7095 Views
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Last post by rssugg
Wed Jul 15, 2009 7:58 am
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question
Replies: 10
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guitarguy » Wed Jun 24, 2009 5:44 am
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I read revimmune doesnt work with people who dont have any enhancenced lesions. Has anyone recently had this treatment who has not shown...
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Ya its wild for me with Asthma. Ever since that treatment I rarely ever use my inhalers and if I do its the Albuterol inhaler on a dusty day. The...
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- 6485 Views
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Last post by chrishasms
Wed Jun 24, 2009 5:14 pm
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Keri??
Replies: 4
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chrishasms » Wed Jun 03, 2009 2:10 pm
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How are you???
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Keri I hope you are ok and that we hear from you soon
L x
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Last post by LR1234
Wed Jun 17, 2009 1:21 am
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Last post by Sharon
Sat Jun 06, 2009 8:45 am
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