SCT Vs. Hi Cy Protocol

This subject would benefit from some discussion.

In the past, I’ve read on this forum that one, or more members, benefited from treatment with Cytoxan. Perhaps they are still on board and will eventually reply. Of course one could always do a forum search and find the subject.

I do know that the Doctors I have seen and questioned about other treatments, where ‘other’ means other than IVIG with immune suppression, they (the doctors) have usually said something like this. “It (the alternative treatment) is too dangerous, I prefer not to use it, IF the IVIG is working.”

This quote from [url]http://neuromuscular.wustl.edu/mtime/immunerx.html[/url] seems to sum up the thinking.

“[I]…Cyclophosphamide is useful in immune disorders [COLOR=”Red”]with life threatening features [/COLOR]and in B-cell mediated disorders that respond to few other treatments. As it has serious side effects, [COLOR=”Red”]cyclophosphamide should be considered a treatment of last resort[/COLOR]…[/I]” Red highlight is my own.

One may see a comparison of a lot of treatments types on that web page.

The link you provided comes from The Division of Hematology, Johns Hopkins University School of Medicine.

Johns Hopkins is a GBS-CIDP Center of Excellence. Presumably, if long term (or even high dose one-time) cytoxan treatment was a good option and if any of this board’s members went there, they might tell us about it.

There are other drugs involved with the SCT treatment plan. Seems to me the wording is something like this, “you will receive Cytoxan and some other drugs designed to specifically attack the immune system components that are causing your problem.”

Yes, please send me a copy of the SCT:Cytoxan pdf. Details in your email inbox.

well, at least if this forum’s email program works….

Alice , who was one of the first on this forum to have SCT, & I have talked about this before. She had the SCT a few years ago, I had the high dose cytoxan treatments back in 2003. In both cases our CIDP was arrested, although I did have to go through 9 months of monthly infusions; her treatment was much quicker. But my infusions cost $800 a month at our local oncology center, & her treatment was very expensive. But in my case I was refractory to IVIG, PE & solumedrol infusions & in very bad condition physically. I believe that there probably are more risks getting chemo than IVIG. Also, one would probably need to be in pretty bad shape for their doctor in order to get this protocol.But for me it was literally a lifesaver, & it has been 8 years since I have had any type of treatment. I have suffered no adverse side effects so far.

Pam H, thank you for your reply. I know you’ve talked about this before- again and again. Still, it is difficult for the new folks to find and read the relevant old data.

So, Mark, here’s one success story. Maybe more will follow.

My treatment program was back in Jan-Sept of 2003, but I will post what I think it was. First I got 3 loading dses at the Uof MN Hopsital to see how I tolerated the cytoxan; I believe these were 1140 mg each. Then 3 more when I got home. This was all in about a 2 week time frame. Then I had monthly cytoxan infusions of 1800 mg for 8 more months. Alice & I have concurred that it was the cytoxan that arrested the CIDP, not the stem cell regime. The main difference between the two is that I was with a very compromised immune system for a much longer time frame. But after getting CIDP, I never had a cold or any sickness until Sept. of 2010 while on a grueling 15day road trip out west, so I believe my immune system booted back rather quickly & seems to be normal.

I found this 2009 Johns Hopkins article, [U]Ther Adv Neurol Disord. 2009 July; 2(4): 261–281[/U] interesting for how many therapies reported a benefit:

“[I]…[COLOR=”DarkGreen”]Cyclophosphamide has never been evaluated in randomized controlled trials[/COLOR], but beneficial effects have been reported in CIDP with an intravenous pulse therapy (1g/m2 a month for up to six months) [Good et al. 1998]. According to one case series, high dose cyclophosphamide treatment can also be beneficial in CIDP patients, but there are obviously increased risks related to this treatment, such as neutropenic infections, transient renal insufficiency and alopecia [Brannagan et al. 2002]. The same group also reported a long-term benefit after a median of 2.9 years in clinical and electrophysiological parameters [Gladstone et al. 2005]. Further positive effects have been reported in case studies and smaller series for mycophenolate mofetil [Gorson et al. 2004], cyclosporine [Odaka et al. 2005; Ryan et al. 2000], alemtuzumab [Hirst et al. 2006], methotrexate [Fialho et al. 2006], autologous hematopoietic stem-cell transplantation [Reményi et al. 2007] and a combination of high dose cyclophosphamide and autologous hematopoietic stem cell transplantation [Axelson et al. 2008b]…[/I]”

And, I reckon, almost all of these have been tried by somebody on this Forum.

Hi Pam,

I am seeing a specialist at the U of MN for my CIDP. I am currently getting IVIG but am interested to learn more about High doses of cytoxin. Could I ask who you were seeing at the U of MN? I am being controlled with IVIG but already sick of planning my life around infusions and I have only had CIDP for a year. Would love to go into remission. I hear IVIG doesn’t induce remission only controls the diseass.

I was a patient of Dr. Gareth Parry from Oct. 2002-July 2005. I say was, because I have not had to go see him since 2005 (or any neuro for that matter. I heard he is no longer accepting new patients, but would probably agree to see an extremely severe case, like I was. I really doubt that many neuros would give you this protocol if you are doing well on IVIG, as this is a very serious treatment program. Remember, I was without most of my immune system for almost 9 months, it was a miracle I never came down with an infection. But then I was basically bedridden & never in contact with people. If you are doing OK on IVIG count your blessings, get your infusions & live life to the fullest. I wish I had been one of those cases, seriously…