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Jolanta-- have you called or emailed the VF to ask for help? Many VF docs consult internationally.
Jolanta-- have you called or emailed the VF to ask for help? Many VF docs consult internationally.
moyan, I am here if you ever want to talk, just a phone call away anytime of the day or night. If I can't answer I will call you back. Keep well and positive
Jolanta
Thank you Jolanta, I am in a pickle right now, despite never having had a full remission, I think I am having a flair. Many small signs and lungdoc said yesterday that inflammation factor is up. And no reliable doc!
If we could find that supportgroup, maybe we could get a doc to become a wg specialist. I have an ENT app. Wed and will talk with him, he seems very knowledgable and has had or have some wg patients, more than 10.
Today is not a positive day, but there is one good thing about that: Tomorrow is gonna be better
Sorry to hear this Moyan. It's ok to have a not so good day, like you said tomorrow is gonna be better!
Hi elephant, thanks. I hope your worst turmoil is over and events have quieted down a bit. Actually, I am not sad any more, took some extra preds and got some immidiate energy. I always wonder how I would know if wg acts up, and now I know: It starts with I don't want to get up in the morning and then I leave the dishes spread on the counter! So now I have a visual alert
Moyan, please ask your doc before taking extra pred. It's dangerous....
I GUESS WE ARE ALL HAVING A NOT PARTICULARILY GOOD DAY.
Happy Easter to all and may you have a bunny day tomorrow. I am picking up my son tomorrow, go to the Polish Church to bless the eggs (polish christian tradition even if its pagan) so I am hoping that tomorrow is definitely a better day.
Jolanta
I had a couple of hours today that I felt less dead. Then dead came back. I only lowered pred by 1/4 mg yesterday and today. Wondering if I'm less dead because of that!
Sangye what dose are you on now. I can't seem to taper from 8, I have been alternating with 7 for over a month. Sheesh can't believe it has been 3 and half years of pred.
Jolanta
I've been on 4mg since September. It doesn't sound like much, unless you know that each 1mg acts like 10mg in me.
My Wegs doc suggested tapering by 1/2 mg or even 1/4 mg. I decided to start by dropping to 3.75mg each day and see how it goes. If I'm okay after a few days I'll alternate 3.75mg and 3.5mg. He said I could do it any way I wanted, as long as I don't drop more than 1mg per month.
Maybe alternating between 7 and 8 is just too big a jump for you. What happens when you do-- do you get Wegs symptoms or what?
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