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A board to discuss Revimmune as a potential therapy for multiple sclerosis

Re: Cytoxan

Postby steven73 » Mon Apr 18, 2011 3:33 pm

lindagrace wrote:Hey Frank~
I received treatment the Cytoxan July 2008. I got Diagnosed in Sept. 1996 and I was in a wheelchair by the time of treatment.

I got back on the copaxone at Kerr's strong encouragement. He said that the majority of patients that didn't get back on Copaxone had symptoms, so I did.

Do you have MS?


Hi Linda. I was also there in July 2008. How have you fared since treatment? Are you walking now or still using the wheelchair? Are you still taking Copaxone? I'd love to hear back from you. Most of us HiCy patients have lost touch.
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Cytoxan

Postby lindagrace » Mon Apr 18, 2011 5:06 pm

Frank
Unfortunately I'm still using a walker, but I feel great! I started blogging and here's my Cytoxan post: http://bit.ly/eluKEL
What about you? How are you doing?
Linda
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Cytoxan

Postby lindagrace » Mon Apr 18, 2011 6:07 pm

ThisIsMS is a different site~ Did you get the last post I wrote to you because it was in my inbox as if you answered? I'll send this one and see if I get it back~ notifying me that I sent this message... we'll see~ I look forward to visiting with you!
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Re: Cytoxan

Postby steven73 » Mon Apr 18, 2011 6:19 pm

lindagrace wrote:Frank
Unfortunately I'm still using a walker, but I feel great! I started blogging and here's my Cytoxan post: http://bit.ly/eluKEL
What about you? How are you doing?
Linda


Hi Linda,

My name is Steven. I answered you after Frank. I'm still progressing. I was just able to walk with braces at the time of HiCy and am now mostly wheelchair bound. I can walk with crutches but it's slow and cumbersome. I still appreciate all that the JH folks tried to do for me. Do you still take Copaxone? Were you pretty much diagnosed as SPMS when you did HiCy? I love your blog by the way!
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Cytoxan

Postby lindagrace » Mon Apr 18, 2011 8:23 pm

Steven,
I'm sorry you're not doing better! Yes I was already diagnosed SPMS when I did the Cytoxan treatment. I went back on Copaxone until Gilenya was approved. Now I use Gilenya and Ampyra (also an alliterative drug, Prokarin). I'm not confident that it helps me walk, but I'm sure I feel better when I take it! I've told so many people about it, I wish they had an affiliate program :) You can check it out here: http://bit.ly/escpNm

I wish I would have done the Stem Cell treatment they were doing at Johns Hopkins when we were getting the Cytoxan. Dr. Kerr asked if I wanted to, I was so out of it and I didn't know anything about Stem Cell therapy so I didn't.

Are you on Cytoxan now? Are you taking any pharmaceuticals?
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Re: Cytoxan

Postby steven73 » Tue Apr 19, 2011 6:41 am

lindagrace wrote:
Are you on Cytoxan now? Are you taking any pharmaceuticals?


Sounds like you have a great local neuro to keep treating you aggressively. When I went back to JH after Kerr left, they really did not want to prescribe any immunotherapy once I was diagnosed SPMS. My local doc recommended Betaseron but I'm having trouble tolerating it. My body VERY sensitive to medicines now. I am interested in going back on Copaxone though.
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Postby RedPenguins » Thu Apr 28, 2011 7:51 pm

steven73 wrote:Good luck with whichever treatments you try. One HiCy patient on this board had a baby after HiCy, and she did it twice.

Hi Steven and everyone -

I am the person whom Steven was referring to. I had HiCy twice (July 08 and May 09). I am now approaching 2 yrs post hicy treatment #2. And knock wood (please, do it! ha ha) - I am doing GREAT.

I had a baby 5 months ago....and NO relapse! A lot of women have horrific relapses postpartum, but I haven't. I've been symptom free since the second treatment! I think maybe it ought to be a 2 phase treatment, but I'm not a doctor, I don't even play one on tv. ;)

I was also treated the first time within months of my diagnosis (dx Jan 2008, 1st treatment July 2008). My MS was VERY aggressive. I went from "normal" one day to needing a cane or walker within months. A month or so after the first treatment, I got rid of my cane and walker! Haven't ever needed it since.

I stand by this treatment wholeheartedly - it changed and possibly saved my life - but maybe the people whom it can help are certain ones (dependent on types of lesions, presentation, length of time having the disease, etc.).

I wish everyone luck!! :)

~Keri
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Postby lindagrace » Fri Apr 29, 2011 4:27 am

Keri~
All right!!! I'm excited for you! Did you use Copaxone after your treatment? Are you using any of the MS drugs now?
Linda
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Postby RedPenguins » Fri Apr 29, 2011 8:36 am

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 still as I am breastfeeding the baby :)

I need to contact the docs at hopkins and see if I will go back on copaxone for preventative measures when I'm done b'fing. (probably in November).

:)
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