Starting Cytoxan next week. Help!
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August 17, 2010 at 8:06 pm
I have been on 120 grms of IVIG every other week for the past 8 – 9 years.
The IVIG treatments keep the disease from progressing while my feet have been numb for the last 10 years and my hands are dull. Fatigue is fairly constant. Pain is managed by daily Norco tablets. The disease has never been in remission. My Neuro suggested Cytoxan and I said Ok. I am looking for remission as an outcome. I have been told that that is a possiblity. I have read that there are some side effects, hair loss, anemia, nausea, ETC.Anyone who has had experience with Cytoxan and could offer insights, I would be very interested. Is remission a possible outcome?
Thank You for this and all the help that has been offered on this Board in general over the years,
David
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August 17, 2010 at 8:13 pm
Sorry I can’t give you an answer, but keep us informed if it helps.
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August 17, 2010 at 10:17 pm
It was started by Rhomcc regarding her son’s success with Cytoxan. It might encourage you.
Good luck and please keep us updated on your progress as we all will want to know how this works for you.
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August 19, 2010 at 1:06 am
I was put on monthly cytoxan infusions from Jan 2003-Sept 2003 & it did arrest my CIDP. The next two years were filled with a lot of healing & getting things back, as IVIG, Solumedrol & PE didn’t work for me. I did manage to get out of the powerchair & back to walking (after 2 1/2 years), got most of the use of my hands back, but I never got everything back. I still walk with AFOs & have some numbness in my hands & feet. I did lose my hair, but tolerated the cytoxan very well other than that. But as you can tell, I was a very severe case & had been that way since onset. It saved my life & I wouldn’t hesitate to make the same decision again. Just remember, if you have any axonal damage, but that probably won’t heal, but it should get you off of IVIG infusions.
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August 21, 2010 at 3:31 pm
Hi David.
I am Rhomcc Son. i have cidp and i have had the cytoxin. I am now in remission after fighting this for almost 2 years now. I had the cytoxin every three weeks for 6 months. I am now walking also, where as i was in a wheelchair before i had it. I did lose a little hair and also got really bad dandruff when my hair came back, as for nausea i had a little bit but my nausea pills took care of most of that. I really didn’t have any big side effects though..it is well worth it in the long run, and just make sure you drink a lot of fluids and do everything you are suppose to.
Ryan -
August 24, 2010 at 6:23 pm
Well, 2 more days. Thanks for the reply’s, they helped. I am still walking, etc., however, my feet have been numb for the last 8 years after a sever attack following 6 PE treatments. Needless to say the PE did not work for me.
I will keep you informed of my progress. Have a Great Day!!
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August 24, 2010 at 7:13 pm
Good luck. I am on PE now and starting rituxan mid September. Please keep all of us updated
I wish you all success
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August 30, 2010 at 6:45 pm
cytoxa worked for Ryan and as you can see he posted. Just so you know that Ryan had the IV infusion form of cytoxan some people get the pill form of cytoxan and haven’t read of many sucess stories of those who had the pill form. I would ask for the IV infusion of the cytoxan.
Good luck I hope it works for you like it did for Ryan. he was being very modest by saying he was in a wheelchair. he had a very severe case of it and was paralyzed and his hands shook so bad that he looked like he had parkinsons and his hands were getting so bad that he lost his ability to write even his own name. he couldn’t even type.
within a few days of his first treatment he stood up by his bed, within the first month ryan could walk by himself he looked like he was going to fall down sometimes but he did it none the less. now after 6 months of treatment he is in remission. he is off all medication except his pain meds. he is continuing to make progress and he is back at college. he moved back there almost 2 weeks ago. I miss him lol
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