Quote:
Originally Posted by MsJeni
I hope I am entering the information in the correct place.
I responded to the ATG surgery after nine months. There was no known cause for my illness. I was diagnosed in 2012. My hemoglobin was a 12 (highest ever) recently and my platelets were 90. I am concerned about the risk of cancer from these meds so I asked the doctor if I could wean from 100 mg to 50 mg. He said that I could and asked me to come in for CBCs within two weeks. I am now on 50mg. I read that you should only wean by 25 mg every three months and that a slow wean prevents relapse. I was originally on 250 mg. I do not remember when but the doctor started to wean me off slowly awhile back. What do you think? I was also wondering if we could be in touch via email. I also have skype (which does not require video calls if you are uncomfortable) but is a way to chat over the computer. It would be assuring to speak to someone who has survived this. I survived but not fully and now I fear getting my blood drawn tomorrow. I also do not mind if you call me and can give you my phone number via email. I can be reached at jennifersag@yahoo.com |
Hi MsJeni,
You may want to create a new thread for your questions so that more people can comment.
My first doctor was a big advocate of the slow wean. He thought that the dose should only be lowered by 25mg *if* the counts were stable for 3 months on the previous dose. If they were still rising (or worse falling) then the wean was stopped. This worked well for me until my insurance changed, and my new doctor wanted me off cyclosporine fast for reasons unknown. He weaned me off every month despite falling counts. Needless to say, I started to relapse. I left that doctor
My new doctor has multiple patients that have been on low dose cyclosporine for 13+ years. I have been on a low dose for 10 years now. Kidney transplant patients are on cyclosporine for life. So, although the prospect of being on a drug that can cause lymphoma is a little disturbing, it is better than the alternative for those of us that are cyclosporine dependent!
Be cautious about tapering if your counts are still rising. There are still gains to be made. Also don't be in a rush to taper completely off. The goal of the slow taper is to find the minimum dose by which you can maintain your blood levels. If you taper down too quickly, you won't know what that minimum dose was and may need to save things by either starting back on a high dose of cyclosporine or resorting to ATG.
Good luck! Be patient!