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OHIO Female WG Patient, being treated through Cleveland Clinic with Rituximab
Hello everyone!
My journey to diagnosis started with sinus congestion. While pregnant in Jan of 2013, I started experiencing shortness of breathe which my OB contributed to pregnancy sinuses. I was told to use a netti pot and after a couple visits to the ER was even given a nubulizer treatment. After not getting relief from those treatments, I telephoned my OB again and she insisted I meet her at the hospital for a better evaluation. At the hospital they started running test to determine what could cause this otherwise very healthy 35 year old who had just run a half marathan to become what appears to be asthmatic or to have breathing problems. After being seen by a pulmonary and ENT, and the results of my blood work, I was told that I had sub glottic stenosis which was causing my airway to narrow and restrict my breathing. They immediately started me on an IV dose of steroids (dexamethosone) and I saw immediate improvement with breathing. I was 6 months pregnant at that time and they said there wasn't any additional treatment for me until after the baby was delivered. Funny how that was said, because two weeks later, my water broke and I was put on hospital bed rest for another two weeks before my little baby was born, almost 3 months early. After his birth, my WG's was being managed by my pulmonary doctor who had some experience with WG's. He referred me to a Rhuemy, who had never had a patients with WG's and had printed me an up to date report and prescribed me CTX oral dose with no additional help or assistance about management of the disease. Not confident in the care, I decided to seek help at the Cleveland Clinic where they have a Vasculitis Center and care for people with WGs. My doctor, Dr. Gota was very knowledgeable about the disease and has been following me since. My time line goes something like, April 2013 saw 1st Rhuemy, prescribed CTX, May 2013 saw Dr. Gota Cleveland Clinic, they revised my meds to methotrexate and prednisone on a taper and I was feeling much better. June and July I had no symptoms or flare ups, August 2013 I had side flank pain and told my doctor about it and she sent me for blood workup and X-ray, from there they found a renal cyst and some inflammation on the right kidney. I had a kidney biopsy to confirm WG's flare in September 2013 and I am now on a Rutiximab, methotrexate, folic, prednisone and protonix. The flare was caught very early, THANK GOD and I still have full function of both kidneys. We are now working to manage my lesions of inflammation on the kidneys and get this WG into full remission.
I was wondering if there are any other people being seen by Cleveland Clinic on this site and if so is there a support group for people in OH. Also I was wondering how many other WG patients are being treated with RTX ( rutixan or rutiximab) and what has been the success of your treatments.
For any women, are any of you considering having kids in the future and/or how has WG affected your pregnancy.
Looking forward to making new friends and having someone to talk to about this new way of life.
SMJ
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Sound like we are in good hands, which make me feel a little better! THanks for the reply guys!
I have no idea what that is, I tried to google it but it didn't say much. My bloodwork came back good so I'll ask him what it is. My involvement is mostly in my lungs. I get nodules that come and go. But glad you found our "family" here and keep us posted and ask anything. I think we know more than most the docs. we see !! And congrats on the new baby, I hope he/she is doing well. Take care !!!
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