What does Cleveland Clinic provide that local doctors do not?

[csjknits]

I live fairly close (just a few hours away) from Cleveland and have been considering making an appointment. I am curious, though--what do you get there that you can't get from a local doc who is knowledgeable?

I am currently nearing remission (diagnosed late april 2015), if not already there. My creatinine and GFR are almost normal. Recent SED rate and CRP tests are normal. ANCA is between 1 and 20 now (was 512 in May). I am working with the nephrologist who saw me while I was in the hospital. I was working with a rheumatologist but we disagreed about treatment and I found him to be difficult to work with.

My nephrologist is up to date on latest treatments. He has experience with Wegeners and is working with other people who have it. He, and his office, are responsive. He shares articles with me that he thinks I will find helpful. He explains bloodwork. He is allowing me to make choices (within reason) regarding my treatment. I feel that he has a good handle on the disease. He also said that there are others in his office with experience should we encounter something challenging.

I don't want to jinx anything, but I feel pretty good right now. I feel so much better than I have for many months.

Is Cleveland still something I should consider? I don't feel like I need to go, but everyone here has such positive things to say about it that I doubt my decision.

[Pete]

The biggest thing you get at Cleveland Clinic is research and experience in studying and treating Vasculitis. I see Dr Villa Forte there. She sees a dozen Vasculitis patients every day she works. I was diagnosed at Ohio State - a major teaching hospital - and they only see a few dozen Vasculitis patients in a year.

[annekat]

csjknits, it sounds like you have done amazingly well in a short time, compared to many of us. Your nephrologist sounds very good and capable of handling the kidney aspects of Wg, and may have good general knowledge about other types of involvement. There is always the possibility of relapse/flares when you try to reduce meds, or if you come off of them completely. Flares may involve other parts of the body than the original ones. It would be good to have a competent rheumatologist, whom you get along with, to oversee your case. Some people just go to the CC or other specialist center once or twice a year and then manage the rest of the year with their local docs. If it is feasible, it might be a good idea to give the CC a shot, for the reasons Pete listed above. Especially if things should start to take a turn for the worse, even a little bit. The CC docs can look at your treatment history and current issues and give recommendations. Having their input could reassure you that things are on the right track. Best of luck, and I hope the good progress continues and you can avoid future flares.

[Psyborg]

Also as a side comment. CC will be willing to work with your current doctors as well. I come up from Columbus to see them and I wouldn't exchange their knowledge for someone local now in regards to the Rheumy end of things. I have seen a Pulmonologist in Columbus and Cleveland and feel very good with either option.

If you don't have a Rheumatologist you really feel good about I'd say see CC for a Rheumatologist and keep your current Nephrologist that you like. But that's just my opinion.

[drz]

I think the most likely outcome is they would confirm that you are getting good treatment. Such consultation at Cleveland Clinic would also serve to make future consultation easier in the unlikely event you should develop some new problem in the future. You might also be able to join some research projects at Cleveland to assist in learning about how to treat Wegs more effectively. I do this at Mayo.

[Debbie C]

Hi and welcome to the group ! That is great that you have a dr. that is good and seems to have a handle on things. My kidney dr here is also good (although ...thank god ,I don't have kidney envolvement ) But you will find as time goes on that your list of drs. will grow. It is good to keep a check on things before it attacks,such as an ent, a pulmy, and an opthromalogist. Where at in Ohio do you live ? I am in Youngstown and I also go to the clinic although I see Dr. Carol Langford there. I just think she is wonderful ,as well as knowledgeable. Whenever I have a question she will get back with me that day and always says if I need her to call. And there has been a couple of times where she has called me to see if I am o.k. since my #s may have gone up a little. I personally think you should get established with one of the reumys up there just in case your dr needs a consult they are aware of you. Good luck on reaching remission.

[Velma]

YES YES YES by all means go see them .. they are the top hospital in the world that deals with WG. If they don't know they will find someone who does.. You will get the best treatment there .. please make an apt and talk to them. Just try. You will be surprised.