AnonymousMarch 13, 2007 at 9:53 am
I am relatively new to the forum. I want to thank everyone for their continued input. I have learned a lot since I have joined. I started my course with GBS in May 2006 and was then changed to CIDP diagnosis after 3relaspes in July. At that point I was started on prednisone. I have had 3 more relapses since then and received IVIG for 5 days each time I relapsed. My relapses seemed to stem from attempting to wean my prednisone. Currently I take 50mg on odd days and 20mg on even days. I am just able to use a walker to walk in my house, otherwise I am in a wheelchair. I went to a new neurologist and he prescribed IVIG at regular intervals now. He is also going to start Methotrexate. Have any of you taken this and what type of results did you see?
AnonymousMarch 13, 2007 at 10:50 am
Mexthotrexate is another immunosupressant, like imuran cell-cept, cyclosporin, etc. These are usually used to extend the time between IVIG infusions, not alone as a treatment for CIDP. To me it seems like your main problem has been not receiving IVIG on a regular schedule, like once a month infusions. One does need to have regular blood tests for the liver, but I know many with RA who are on this drug, so it must be safe.
I would worry more about getting off the steroids, as that is a rather high dose that you are on. They do terrible things to the body. When I was on a high dose prednisolone infusions for 21 months, I had sleepless nights, irritability, a huge weight gain, a rash all over my body, & ened up with cataract surgery on both eyes. I think it best if you get regular IVIG, & trying this new drug to extend the need for it as often.
AnonymousMarch 13, 2007 at 4:28 pm
Thanks Pam, I too am worried about the effects of the steroids and I also have had many sleepless nights! The neurologist told me that he thought the methotrexate had fewer side effects than the others, so I am trying to validate this as well as see if anyone else in “CIDP land” has had experience with methotrexate.
AnonymousMarch 13, 2007 at 7:30 pm
After the five day aggressive series of IVIG was done, my doctor put me on a maintenance of one day every two weeks for the infusions. My suggestion would be to tell your doctor to try this so you can find out how you feel. I was on my maintenance for about three years and I did well. I am stable as far as CIDP goes now. Just pay alot of attention to how you feel in-between the IVIG’s, if you feel good (more good days then bad days) most of the time, then your doctor can space them out more, like one day every three weeks or once a month. As I said before, pay attention to how you feel in-between the infusions when they’re spaced out. If you start having more bad days, go back to one day every two weeks.
I was on methotrexate for one year, but I think it was the IVIG’s that helped the most.
AnonymousMarch 15, 2007 at 2:48 am
Just started the methotrexate on the weekends-3 pills.Remember to drink lots of fluids to flush methotrexate out of your system. I feel pretty nauseous, my gums became sore and skin extremely dry but I am very much hoping I can space out the IVIG infusions. Will finish my two years of the 3 days every other week infusion routine.What an anniversary.
My neurologist is cautious, must get the bloodwork done and see him more often.
IVIG has given me back so much-the nerve pain is bearable and I can actually walk again on my own.
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