Quote:
Originally Posted by llamafairy
Hi, I saw your post while I was doing a Google search on the condition. I've been diagnosed with Idiopathic Hypertrophic Cranial Pachymeningitis for a very long time now. I had the first bout of it from 2000 to 2003, then was in remission until April 2010 and have been trying to get it under control since then. I've been on up to 80mg of Prednisone the entire time, never lower than about 30mg. I agree, the steroids are terrible, especially the long-term effects. We've tried Methotrexate, with no effect. This summer, I tried Rituxan, with great hope, but have recently found that it had no effect on the inflammation. I see my neuro again next week and we may be trying the Rituxan again with an added agent, possibly Cytoxan.
** Best of luck to you and I hope to hear from you soon.
Wendy  |
Thanks Wendy! It is nice to know with something this rare there is someone else out there with experience with this. I will apologize now, but as you can tell doing this forum thing is totally new to me. If you have pointers let me know! I am new to the diagnosis and the Drs are trying to get mine into remission. I have had 4 MRI's since June and the last one showed almost complete recession of growth/inflammation. I switched from Decadron to Prednisone Sept. 19th. Unfortunately, I think my symptoms have come back. Hard to tell if it's a sinus cold (which I have), rebound headache, withdrawl symptoms or what. How could you tell you were relapsing? I hope your new drug regime will work for you. I have heard good things about Rituxan. I am allergic to Imuran, neuro wants me on Methotrexate if I relapse. What were your experiences on it? Have you been able to work? I have many questions...Hope to hear from you soon too. Take care.