Hello, yet another newbie!

[berylj]

hi malin
i agree with sangye, its important if your having a flare that you get refered to a wegs specialist, i attend a vasculitis clinic at addenbrooks
hosp. in cambridge uk.docs are brilliant, they have patients from all over the uk, jack sees docs at a hosp in birmingham,he has high praise for them too (hope he is doing ok) hope you feel better soon berylj

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[Sangye]

How are you doing, Beryl?

[pberggren1]

Hi Malin:

Rest is important. But also good docs are important as well. So dido to what Beryl said.

[berylj]

Hi sangye
im ok thanks sangye, have an app at the clinic friday, hopefully the wegs is back under control after my flare, im on 2.5 pred & 100 mg azathioprine think i will be on azathioprine awhile yet,noticed the return of some symptoms since reducing the pred tho, suppose that we will always have some symptoms even on good days,with this wretched disease! BUT HEY!! the sun is shining! spring is here!cant be bad!! hope you are keeping well also best wishes from berylj

[elephant]

Hey that is great Berylj to be down to 2.5 of prednisone. Good for you! Hope you continue on for better health.

[Sangye]

That's great news, Beryl. My Wegs doc has told me that there will likely always be some symptoms, even in a solid remission. I think the people who have symptom-free remissions are probably quite rare. It just depends on what the symptoms are-- how life-altering, etc.... He's also said that some symptoms are actually residuals from the drugs or damage from Wegs. He's done a lot of research on how docs can determine which symptoms are active Wegs and which are the rest.

[elephant]

I love to know how the docs determine which symptoms are active wegs and which are the rest! Bring those secrets here to the forum.

[Sangye]

LOL-- I had a link to one of his papers on it, but I can't find it. It was along the lines of an algorithm.

[elephant]

Thanks for trying Sangye. I'll ask my WG in June about it.

[Sangye]

I see him in June, too. I'll (try to remember to) ask him.