Start Cyclophosphamide (Cytoxan) Monday
 

At my visit to Vanderbilt last month, the neuro recommended that I try Cytoxan as an immune suppressent. I talked to my neuro who spoke with the Vandy neuro and my neuro referred me on to an oncologist for a consult.

I met with him last Friday with a list of questions. He had done some research into the treatment of mg with cytoxan and printed me off an abstract from a double blind study done in 2002 on 23 mg patients. I grant you that's not a lot of people, but with a disease this rare, I'll take almost any double blind study that has been done. You can find the abstract here:

http://www.ncbi.nlm.nih.gov/pubmed/12115946

I also asked him if he had ever treated anyone with an autoimmune disease with cytoxan. He told me that in the last 6 weeks alone, he has had 3 new patients with other autoimmune diseases referred to him for cytoxan. It's too soon yet to tell if the treatments are working, but they haven't had any unusual side affects at the low dose they are taking.

Based on this study, all the research my daughter and I have done and after discussing with all my docs, I'm going to go ahead and start the infusions Monday. If I react negatively (nausea, hair loss, etc.), I can stop right away with no additional side affects.

The goal is to reduce my dependence on predisone (I've been taking it pretty steadily for about 7 years) and hopefully, get off Cellcept and reduce the amount of IVIG I currently receive. One additional benefit I am praying for is to lose the double vision. I have been wearing a patch for 2-1/2 years and it is getting really tiresome!

Wish me luck and I'll keep you posted on how it goes:)

Please keep us posted. This may be my next treatment. Gosh I hope it helps you.
Mike

I do wish you all the best results with this new treatment. Pls keep us updated on your progress. Good Luck!

I hope you get some relief from your symptoms with the new treatment. Do keep us posted on how you respond to the Cytoxan.

Cate

Fill us in on your first treatment, please.
Mike

Well, I had my first infusion yesterday - it took about an hour and went without any problems. They gave me an anti-nausea (zofran) IV and I took another one last night before I went to bed. I haven't had any nausea or other side affects at all. I'm tired today, but I think that's because I've been dog sitting 2 chihuahua's for my daughter for 3 days and sleeping with them and my own yorkie has been eye-opening (literally). Fortunately, they picked them up this afternoon and tonight I will finally be able to move in my own bed without repositioning 3 dogs! My yorkie has slept with me for 8 years and she knows how to get out of the way!

So far, so good! My neuro called me yesterday morning before the infusion and we discussed the Cellcept. We decided to leave it at 3,000 for the first month and start reducing it next month. Will post an update after the next treatment on April 2.

Thanks for the update. This is all so interesting.
Mike

Had my 2nd treatment today - I've noticed some improvement in being able to focus my eyes when I first get up in the morning - it has been at least a year since I've been able to focus both eyes on the same thing (I have to wear a patch at all times). It wears off after about 5 minutes, but it is an improvement. My doc said that if I continue to see only small improvements or no improvement at all, next month we'll up the dose a little. Fingers crossed! I'm not having any nausea or problems at all.