This Is MS Multiple Sclerosis Knowledge & Support Community

chrishasms · Post by **chrishasms** » Wed Mar 25, 2009 3:08 pm

OMG...Bob that is lunacy! It's not you. It works for everyone to some extent...did I read that right?

Lyon · Post by **Lyon** » Wed Mar 25, 2009 3:36 pm

mommasan · Post by **mommasan** » Wed Mar 25, 2009 4:23 pm

Along this vein. I was at Hopkins for my 9 month. My past month has been quite lousy, MS symptoms are worse (no reactivation) but I will post that under another forum. Dr. Kerr said that the SPMS patients treated with HiCy went downhill at first, but by year 2 they had rebounded and returned to the same point they were at before HiCy. He found that really positive- no decline in SPMS in 2 years.

Lyon · Post by **Lyon** » Wed Mar 25, 2009 4:46 pm

chrishasms · Post by **chrishasms** » Wed Mar 25, 2009 5:33 pm

I'm just shocked there is this much done with HiCy for MS and it's not fast tracked. I just don't get it.

Lyon · Post by **Lyon** » Wed Mar 25, 2009 5:49 pm

marcstck · Post by **marcstck** » Wed Mar 25, 2009 8:42 pm

Bob, thanks for posting this. I am familiar with this research.

I must point out that this study was a retrospective look at standard cyclophosphamide therapy, not high-dose cyclophosphamide. The treatment studied used the drug as an immunosuppressant, not to eradicate immune system in preparation for rebooting it.

I've discussed this study with my neurologist, and he claims that cyclophosphamide has not benefited any of his PPMS patients. Or, more correctly, he said that the amount of benefits seen do not justify the risks inherent in long-term cyclophosphamide therapy.

At this stage of the game, I'm ready to try anything. If somebody posted a study that said crawling up the ass of a fat man reduced EDDS scores by .2%, I'd be donning a helmet and heading toward the big and tall shop.

There is a doctor up in Boston that's a big fan of Cytoxan, and uses it to treat his progressive patients. I haven't seen any published results from his work, though.

I'm pretty sure I would not be a candidate for Cytoxan therapy any time soon, because of the havoc wrought on my immune system by Rituxan. I'm scheduled see my primary neurologist on April 4, at which point I'll find out what my CD 19 counts are. I've tried various forms of immunosuppression over the last six years (Rituxan, Tysabri, CellCept, methotrexate) with absolutely no positive response, so I have my doubts as to whether Cytoxan would prove anymore beneficial...

thanks again, Bob. I'm glad you have my back...

marcstck · Post by **marcstck** » Wed Mar 25, 2009 8:46 pm

chrishasms wrote:I'm just shocked there is this much done with HiCy for MS and it's not fast tracked. I just don't get it.

The treatment studied retrospectively here had nothing to do with HiCy. This was standard cyclophosphamide therapy, using the drug long-term as an immunosuppressant agent.

Lyon · Post by **Lyon** » Thu Mar 26, 2009 2:11 am

chrishasms · Post by **chrishasms** » Thu Mar 26, 2009 5:38 am

Well my point is that HDC is safer than a pulsed version. Dr. Brodsky told me people could do this once a year w/o an issue because the drug is in and out of your body so quick w/o hurting the marrow. He said the toxicity, and issues are with the pulsed version because it just sits in your system for so long.

So if that is true, and they are willing to pulse someone with PPMS, why not just do a once a year treatment of it?

I am still just baffled by that study.

Lyon · Post by **Lyon** » Thu Mar 26, 2009 8:01 am

chrishasms · Post by **chrishasms** » Thu Mar 26, 2009 9:04 am

Well more baffled by these findings and only JH or Rush is doing it.

marcstck · Post by **marcstck** » Thu Mar 26, 2009 10:55 pm

Lyon wrote:
marcstck wrote:I'm pretty sure I would not be a candidate for Cytoxan therapy any time soon, because of the havoc wrought on my immune system by Rituxan.
Hi Marc,
I hadn't realized, although I've never read reasons to think that your levels won't eventually return to normal after Rituxan.

I'm admittedly not familiar with the metric system and wasn't 100% sure where 700-1000 mg/m2 dosing level fit in, but due to the time frame I figured the study was a compilation of suppression dosing.

I notice that I was sending mixed messages in that in my next post to Chris I referred to cyclophosphamide as "HDC". Still, my gut feeling is that, if positive results are found from suppression doses, much better results would be found by using higher doses and rebooting, although probably not everyone agrees.

Eventually, my CD 19 levels will return to normal. I see my neurologist on April 4, at which time a find out where my levels are at. If I were to undergo a second round of Rituxan dosing, my levels might not return to normal for years.

I agree that if Cytoxan used as immunosuppressant was effective in treating certain patients, those patients would probably also see benefit from immune system rebooting.

Since SPMS evolves from RRMS, which we know has a significant inflammatory component, I do think that some SPMS patients will see benefit from HiCy therapy. I would expect these patients to be early in that stage of the disease, when enhancement is still commonly seen.

As you know, I believe PPMS to be an entirely different beast. PPMS patients typically show little sign of immune system involvement in the disease. In my specific case, my two lesions have never enhanced, I have never tested positive for O-bands, and multiple attempts at immunosuppression have proved worthless. I'm certain that there is another mechanism at work in the destruction of my nerve cells. It may be mitochondrial, or retroviral, or perhaps vascular, but I'm not of the opinion that my immune system is the primary culprit.

Believe me, if I thought that Cytoxan in any form would be helpful I'd be inserting the lines into my veins myself...

Lyon · Post by **Lyon** » Fri Mar 27, 2009 3:08 am