Reply To: cellcept/ cyclosporin/immunosuppressants questions

March 11, 2012 at 1:49 pm

Hi Lori- I did see Dr Dyck at the Rochester Mayo – so funny he said the same thing to you! It was his recommendation to start an immunosupressant- I have been there twice now first for second opinion and confirmation of dx and once for follow up – I have not gained back all my strength but am definitely better than prior- I am having trouble determining what is reconditioning vs actual weakness- my legs do fatigue when I overdo and I am one who gets a lot of increase in tingling and paresthesias with activity- I used to be very active prior to CIDP I had done 100 mile bike rides, was a runner and rode horses prior and have gotten no where near that level now I am tired after a trip to the grocery store. I also have a new diagnosis of mixed connective tissue disease/ lupus and not always sure how to sort out the various symptoms.
It took me really about 9 months to see results from Imuran – Imuran takes a long time to work . cellcept works faster. I have noticed some mild thinning of hair but again I have so much going on not sure what to attribute it to – I am 46 . My husband thinks my hair is the same so not sure how objective I am about this. I agree this site is invaluable and it is amazing how many common experiences we all share. Keep us posted!