Had a nice visit at Cleveland Clinic

[elephant]

I went to see Dr. Langford yesterday, it was my third time seeing her. We discussed getting off Cellcept, but opt not to, since I had a kidney transplant in 1989 and my left maxillary like act likes its flaring ( mini flare vs damaged). I have been on Cellcept for over two years and I was hoping to get it reduced, but she also said if I really wanted to come off it then I would go off slowly and have to get monthly labs. Then if I flared then it would be more prednisone and more medications. So, I think it was smarter for me to stay on the cellcept. She would like me to stay on 4 mg of prednisone, but if I want to come off it...go very very very slow.....1/2 mg a month. So I will take my sweet time. I recently had a tooth pulled out in my upper left maxillary and I wanted to have a tooth implant. Dr. Langford thought it was concerning since it is my left maxiallry and too many what ifs ( infection, bone density, since I have osteopenia, healing...ect). I guess I will wait, I too had some concerns. The oral surgeon thought I needed a sinus lift, not a good idea since my left maxiallry is very swollen. I am glad I took two planes and a rental car to see her. It is worth it!

[Hammy8241]

I am glad I took two planes and a rental car to see her. It is worth it!

I think sometimes we forget just how far you guys have to travel for advice and treatment.

[Sangye]

SO glad you saw Dr Langford, Elephant! She follows your case well and really knows you.

[chrisTIn@]

I guess I will wait, I too had some concerns.

It's good to read that your journey was worth the trouble, and that you were happy to share your concerns with someone that can give you really good advice.

[aewaustin]

So glad you had a good visit. Dr. Langford is just amazing, we are so lucky to have her as a expert!

[elephant]

Yes, we are lucky to have her! So glad I can go once a year to see her. Thanks for all the support guys!

[Jack]

I have also had a transplant and the line taken has been that with both Wegener's and the organ to be kept in check it would be far too risky to ever come off Celcept and Pred completely. As it turns out, I can't get below 10mg of Pred without trouble anyway so I am stuck with it otherwise I would be aiming at around 4mg too.

[Rose Cozzette]

I went to see Dr. Langford yesterday, it was my third time seeing her. We discussed getting off Cellcept, but opt not to, since I had a kidney transplant in 1989 and my left maxillary like act likes its flaring ( mini flare vs damaged). I have been on Cellcept for over two years and I was hoping to get it reduced, but she also said if I really wanted to come off it then I would go off slowly and have to get monthly labs. Then if I flared then it would be more prednisone and more medications. So, I think it was smarter for me to stay on the cellcept. She would like me to stay on 4 mg of prednisone, but if I want to come off it...go very very very slow.....1/2 mg a month. So I will take my sweet time. I recently had a tooth pulled out in my upper left maxillary and I wanted to have a tooth implant. Dr. Langford thought it was concerning since it is my left maxiallry and too many what ifs ( infection, bone density, since I have osteopenia, healing...ect). I guess I will wait, I too had some concerns. The oral surgeon thought I needed a sinus lift, not a good idea since my left maxiallry is very swollen. I am glad I took two planes and a rental car to see her. It is worth it!

glad you had a productive visit w/Dr. Langford. this upand down is so unsettling. I have to increase the preds and go more slowly to get off, hopefully. just know you have a lot of support in this our convoluted journey. sigh...

[ArlaMo]

I liked Dr. Langford so much! It sounds like she has your care well in hand. I am trying to figure out when I can make the trip back to see her again.

[elephant]

I see her yearly and it works out fine. I total her I will see her yearly, you never know when things start to get a little rough around the edges so its good to stay in touch! There is alot to do around the Cleveland area. You can go to the lake and museums....oh of course shop and eat!