Sanyge

[michael99]

what items do you discuss with your Doctor at JH?? i am concerned as i have some pain in my hip and legs. i have been off ctxand pred for 8 months and have been on imuran. i am not sure that imuran is keeping the disease in remission (maybe for my kidneys) but the pain in the hip is eerily familar. did you have any pain in you hips/legs? since most of you have more experience with thsi disease, does it sound like a flare?? if so, do you get right back on the ctx and pred?? are there any tests that can accurately tell if this disease is active??

[JanW]

I'm not Sangye, but I can tell you that I would discuss anything and everything with my rheumy here in NYC. So if I have a pain in my knuckle (true story) we are going to talk about it. If I'm getting headaches, we are going to talk about it. If I get a rash, I go in, and he sends me to a derm the next day (turned out to be viral, nothing to do with WG). Blood tests (specifically inflammatory markers like ESR -- also known as sedrate -- and CRP may signal disease activity, but symptoms are a main thing that any good doc should look at. A doctor may decide to increase the dosage of your medication (for instance, I have quite a bit of room before I hit a high mtx dose), or they may move you on to a different drug if they feel that you are flaring, depending on the severity of your case.

[Sangye]

I agree with Jan. I tell my Wegs doc everything and let him decide what to do with it. He sends me to different specialists for some things.

Like Jan said, they should look at your ESR and CRP to monitor general inflammation, which gives info about the disease activity. However, in some of us inflammatory markers don't increase until the disease is very active. That's true for me. Along with inflammatory markers your Wegs doc should listen to ALL your symptoms. Always take seriously any symptoms that are similar to those you had with active disease. I have a few that are 100% accurate indicators of active disease for me.

One of them is joint pain. I had severe joint pain in every joint prior to diagnosis. After about 8 months of ctx and pred, I still had pretty significant joint pain. It continued like that even with cellcept for 2.5 more years. We now know the Wegs was not under control all that time. Last year's severe flare proved it. After receiving 2 rounds of rituximab, the joint pain was greatly reduced. It's been creeping back the past couple months, but my Wegs doc is aware of it.

[elephant]

Micheal, joint pain for me is a great indicator that my WG is not controlled. Let your doctor know asap.

[jola57]

I'm totaly on board with telling your specialis even the smallest of detailes. You want to nip the flare in the bud and not let it go downhill fast