Long Term

[moyan]

Hi all, I was diagnosed with WG after labwork showed kidneys down to 50% in 3 months. Thought I was perfectly healthy when I found myself in hospital for 2½ weeks. That's why I have been wondering if I was/am having a flare up, nothing to compare with, but wheezing, swollen feet, ear "on and off", joint pain and extreme tiredness. Nothing really alarming. Lungdoc told me at my app that inflammatory was up, so I immidiatly arranged to see the internist who has been my WG doc from start and he upped pred 20<50, imuran 100<150.
What scares me stiff is that he obviously hadn't looked at the 1 month old lab report!! Any comments?

[Sangye]

Moyan, what I've learned from my own experience and watching other Weggies is that if you suspect you're having a flare you probably are. I think it takes a lot to get us past our denial, so once we've moved into "suspicion" I think it's a red flag that we're sensing something.

Every one of your current symptoms is a sign of a Wegs flare for me. I'm especially concerned about extreme tiredness. Please don't take these symptoms lightly just because they might be less severe than your initial presentation. I did that last year, and the Wegs really got ahead of me.

Why do you say your doc obviously hasn't seen the lab report? I don't understand that part.

[moyan]

Hi Sangye, I hope you are well enuff to enjoy your days.
I don\t think he reads those reports until I get there. Shouldn't it cause some concern when infl. is up? And a phonecall or app? If I have an infection somewhere I ask the lab to write that down on report

[Sangye]

I can't tell. Some docs only call when there's something abnormal on the lab work that isn't being dealt with. It's possible that because he increased your pred and imuran, he feels it isn't necessary to have a conversation about your lab work. Maybe he already looked at it and made the dosage changes?

Did you make any progress emailing the VF to ask for help finding a Wegs doc?

[moyan]

Sorry Sangye, I must have expressed myself poorly. Once the lungdoc told me the one month old lab report said infl. up, I knew it was a flair and made at once an app with the internist and told him I want meds adjusted. Is < pred and imuran enuff?

[Sangye]

I don't know if your new meds dosages are okay, Moyan. You need a qualified doctor to decide that. To be honest, it scares the daylights out of me that you're guiding your care-- telling your docs to raise dosages, wondering if you're having a flare, etc....

[pberggren1]

Yes Eileen, I am going to have a CT of my lungs and nasopharynx.

[moyan]

Sangye, Maybe it sounds worse than it is, between the docs and here, you get a pretty good picture. Now I know how a flare approaches me, very softly, I thought it was a cat Only thing is, no doc here has a clou to what WG is but the ENT whom I had to cancel yesterday due to handidart and internist collision. We'll see how this works, but my intuition tells me that since I have at least 1½ months of flare, something stronger should be added. Well, I'll get a new app with ENT and hear what he has to say.
Thank you for all your time and advice, Sangye. You give me more comfort than the docs

[elephant]

Glad to hear that Phil that your having the CT scan of both. I wish you were having it sooner. But I know how that goes.

[elephant]

Hey Moyan, I agree with Sangye. I have been quiet about it, cause I didn't want to nag you, but Sangye is doing her job nicely.
Can the ENT call the Vasculits Foundation, since you trust him. My thoughts are on you getting better and getting excellent care for this thing called WG.