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Originally Posted by Yorkiemom
I emailed Dr. Birnbaum early today and plan on seeing him. He has asked that my records be fowarded to him. Fortunately, Johns Hopkins and the other doctor there are on our insurance. He did say that they see patients from all across the country.
One thought that ran through my mind though. Is there anything else new that can be done for Sjogren's, even if it is diagnosed?
I cannot recall all of the details of Billye's visit, but wondered if Mayo Clinic said anything about alternative forms of treatment, or new medications.
It seems to me something was mentioned there about IVIGG's. I did take those, and they definitely helped. After several rounds though, I had a reaction to them and the IV's were discontinued. I would take those again, but would need some means of counteracting the terrible burning caused during the last ones...
Cathie
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Cathie,
Mayo did not give me any alternate treatment at the time I went (over a year ago) I was to go back this year to be re-evaluated. My husband is having back problems and I don't think there will be another visit. But I wonder if the burning you have was not the small fiber sensory neuropathy. It is a hallmark of Sjogren's I believe. And mine burns horribly. I'm in a vat of hot oil from my toes thru my upper back at this point. I desperately need to up my Lyrica and I tried to but it was just too much at one time and I was so loopy. What was worse was knowing I was loopy.
I'm taking methotrexate, 20 mg. Have they ever suggested methotrexate for you for the immune system issues? I know you are taking Prednisone. But my rheumie was considering putting me on steroids with the methotrexate if my sed rate hadn't come down a few months ago.
I wish you luck with this doctor and I'm anxious to see what he has to say.
Billye