Whoot! I am finally off of the prednisone. I took my last dose in January and have been doing pretty good since then. Lately I have had some joint pain especially in my wrists and fingers, but Dr. W (standing in for Dr. A) didn't seem too concerned. Dr. A is having visa problems or some such and can't seem to get back in the country. He's been gone at least 4-5 months. They hope he'll be back by my appointment in May. In any case, Dr. W says that he will start dropping my methotrexate at the next visit too. I am excited about that so I don't have to be so worried about getting sick all the time.
I should mention that I've lost about 10 pounds since last summer too. It has been slow going, but I am keeping at it. I think it will be easier now that the weather is getting nicer and we can start walking after dinner again.
Subscribe to:
Post Comments (Atom)
4 comments:
Hello, I came accross your blog. I am a wegeners patient as well. I was diagnosed in 2004. I have been through a lot. When I was first diagnosed my creatinine was 6.8. I just got a kidney transplant 4 weeks ago and am doing fine now. Just don't let this disease get you down, it DOES get better. You can beat it.
I am glad that you are doing well. The thought of a kidney transplant is terrifying to me. I don't have any kidney involvement yet and I hope it stays that way. Good luck to you.
hi - found you blog from wgdiscussion on yahoo - we are also in Kansas City - my husband was diagonosed with WG the beginning of October 2009 with kidney involvement - he went right on dialysis three times a week - he was home from the hospital two weeks and we were adjusting to the meds and outpaitent dialysis when he suffered a subarachnoid hemorrhage - he has been at KU med in neuro ICU for a month now and despite MANY complications is doing amazingly well - his kidney function improved and he was able to stop dialysis on Nov 1 - they have reduced his cytoxan dosage because it was causing him some serious problems - we were supposed to start seeing a rheumatologist at KU but due to other serious complications developing haven't yet - see that you wrote about Dr Awadh - is this Basem Awadh from KU Med? - what is his experience with WG? - thanks for writing about your expericence with WG, hopefully you are done with it forever!!
Hello Becky,
I'm sorry to hear that your husband was diagnosed with WG, but happy to hear that he is doing so well. My doctor is indeed Basem Awadh from KU Med. When I started seeing him in 2007, he had just started his fellowship with the KU Rheumatology department. This year he took a full time position with the department. I guess what I'm trying to say is that he is fairly young, but I think he is more up to date on current WG treatment than some of the older doctors at the clinic. When I first started going to the KU clinic, I was really interested in finding someone with a lot of experience with WG, one of my doctors said, "WG is a really rare disease. No one has a _lot_ of experience with it." Last year, Dr. Awadh did tell me that he wanted to specialize in WG and he always seems to have a new bit of research or information to tell me about when I come in, so I like that. I know that there is a WG doctor at St. Luke's (Dr. Abdou) who probably has more experience.
I think with a rare disease like WG, you have to be your own best advocate. I try to do a lot of my own research on the web about things that I think are relevant to my case. Check out the Vasculitis Foundation (which is base right her in Kansas City) if you haven't yet: http://www.vasculitisfoundation.org/wegenersgranulomatosis
Good luck to you and your husband. I am happy to answer any other questions you might have.
Post a Comment