Search found 14 matches

by criptastic
Tue Jan 14, 2014 3:39 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: Multiple Sclerosis drug Revimmune receives FDA designation
Replies: 6
Views: 16324

Re: Multiple Sclerosis drug Revimmune receives FDA designati

I had the Revimmune protocol 38 months ago. I don't have MS, but myasthenia gravis. It has been totally worth it, although I wish I'd done it earlier. I was 48 when I did the treatment, and the first, and so far only patient to do it for MG at the center which did mine. While I can't say I am sympto...
by criptastic
Tue Nov 08, 2011 11:23 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: Is cyclo really going to help?
Replies: 3
Views: 4344

Re: Is cyclo really going to help?

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 apparently not unusual, as the disease doesn't want to "go down without a fight." I have not had any flare ups since about March of last year, and one year ag...
by criptastic
Tue Aug 30, 2011 4:53 am
Forum: Stem Cells
Topic: Stella HSCT Updates
Replies: 37
Views: 8353

She has C-diff, which makes perfect sense since she had powerful antibiotics for the first line infection, followed closely with chemo and more antibiotics. I so hope she can pull through this with no additional complications!

Go Stella, GOOOOO!!!!
by criptastic
Mon Aug 29, 2011 9:13 am
Forum: Stem Cells
Topic: Stella HSCT Updates
Replies: 37
Views: 8353

That is true, but when used with other diseases, especially leukemia, HSCT fatalities do occur. Risk of infection is ever present, and she succumbed to the pathogens at the worst possible time--just a day or two after the transplant. Stella had a Hickman line infection and sepsis following the condi...
by criptastic
Mon Aug 29, 2011 7:55 am
Forum: Stem Cells
Topic: Stella HSCT Updates
Replies: 37
Views: 8353

I am assuming that to mean that they do not know if she will survive this complication. She apparently is quite ill with infections from 2 different pathogens.

I have been following her blog. I hope she is able to rally and pull through this setback, as she has such a bright future ahead.

C
by criptastic
Thu Jun 02, 2011 10:02 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: Gots me a date...
Replies: 4
Views: 4603

Oh, OK.

I was 48.
by criptastic
Thu Jun 02, 2011 7:47 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: Gots me a date...
Replies: 4
Views: 4603

What poll?

Good luck! You can do it!

Hope you get great results. I'm still doing well (non-MS) almost 7 mos out from the reboot!
by criptastic
Mon Jan 10, 2011 7:33 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: What tests prior?
Replies: 12
Views: 5280

I have myasthenia gravis.
by criptastic
Fri Jan 07, 2011 8:32 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: What tests prior?
Replies: 12
Views: 5280

UTSW in Dallas.
by criptastic
Mon Dec 27, 2010 5:03 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: Immunizations?
Replies: 4
Views: 4664

I did the protocol in November and it was never mentioned. I wouldn't redo if it was recommended. Too many "unknowns" in vaccines.

Good luck!

Crip
by criptastic
Fri Nov 26, 2010 4:11 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: What tests prior?
Replies: 12
Views: 5280

I had HiCy earlier this month, tho not at Rush. Prior I had a list of about 20 different blood tests (lots of viral studies) and a Muga scan for my heart.

Feel free to ask any questions.

Criptastic
by criptastic
Thu Oct 07, 2010 11:21 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: starting this week, few questions...
Replies: 7
Views: 4873

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
by criptastic
Thu Oct 07, 2010 10:54 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: starting this week, few questions...
Replies: 7
Views: 4873

Well, it doesn't sound like you're getting the revimmune protocol because there are no monthly boosters with that. You must be doing a modified cytoxan treatment regimen. As for the Hickman, I have no idea. I have a medi-port, implanted, so will use that. They were all very excited to see my port ye...
by criptastic
Thu Oct 07, 2010 5:45 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: starting this week, few questions...
Replies: 7
Views: 4873

I am in the process of being scheduled for a reboot as well. My protocol will be the typical Hopkins one, although trips in for labs won't be daily and I may be allowed to do my own Neupogen injections at home!



Best of luck to you, Jackson!