I was here a couple years ago but let my membership lapse after ages of conflicting diagnosis.
Except for d and bleeding( really bad the last time, lasted three weeks and made me anemic, including while I was on an Alaska cruise!) all of my symptoms are extra intestinal ( joint pain, vasculitis, episcleritis) and the only lesions I've ever had ( so far) were in my mouth. After several really bad doctor experiences I finally found a great rheum in the same practice with my new gi who has me on azathioprene, pred,plaquenil and lialda ( along with my gi doc) and things have settled down a fair amount. It's been frustrating not having an actual dx, but the docs have all said it looks just like IBD just without the positive scopes. My dx code has been for uctd which irks me a little but hey as long as I'm getting treated ok.
I had been working really hard to get off the pred and was down to 4 mg when I got slammed with a bad flare about three weeks ago. Thing is, it started with a cough that led to a cracked rib ( urgent care said rb sprain, ER visit, said pleurisy, pulm says fracture) and then hit my joints, etc.
The cough has been chronic for months and waxes and wanes At the urging of my rheum and pcp I saw the pulmonologist, fully expecting to hear it was allergies or something, and after doing a bunch of tests he said he is positive I have "atypical crohn's" where the extra intestinal stuff comes first and that I have pulmonary complications. Of corse the treatment is not more cowbell, it's more pred which I hate!!!!!
He is also consulting with my rheum to have my other immunosuppressents kicked up or switched up.
I guess all this is a long way to say hi again, and I have no idea if I really fit in here, but I sure don't know where else to go.
Sharon
Except for d and bleeding( really bad the last time, lasted three weeks and made me anemic, including while I was on an Alaska cruise!) all of my symptoms are extra intestinal ( joint pain, vasculitis, episcleritis) and the only lesions I've ever had ( so far) were in my mouth. After several really bad doctor experiences I finally found a great rheum in the same practice with my new gi who has me on azathioprene, pred,plaquenil and lialda ( along with my gi doc) and things have settled down a fair amount. It's been frustrating not having an actual dx, but the docs have all said it looks just like IBD just without the positive scopes. My dx code has been for uctd which irks me a little but hey as long as I'm getting treated ok.
I had been working really hard to get off the pred and was down to 4 mg when I got slammed with a bad flare about three weeks ago. Thing is, it started with a cough that led to a cracked rib ( urgent care said rb sprain, ER visit, said pleurisy, pulm says fracture) and then hit my joints, etc.
The cough has been chronic for months and waxes and wanes At the urging of my rheum and pcp I saw the pulmonologist, fully expecting to hear it was allergies or something, and after doing a bunch of tests he said he is positive I have "atypical crohn's" where the extra intestinal stuff comes first and that I have pulmonary complications. Of corse the treatment is not more cowbell, it's more pred which I hate!!!!!
He is also consulting with my rheum to have my other immunosuppressents kicked up or switched up.
I guess all this is a long way to say hi again, and I have no idea if I really fit in here, but I sure don't know where else to go.
Sharon