Big HELLO from CROATIA

[Sangye]

Terri, are those the only symptoms you're having (leg, ankle pain)? If so, please call your doc today. That could be blood clots. That needs to be ruled out. Please don't wait-- it could be life-threatening. Make sure your doc knows that Weggies are 23% more likely to develop clots than healthy people.

[elephant]

Hope you make it here to the states Sebastian. You will love it here and also feel great knowing you are getting great care with a Wegener's specialist. You only have one life to live!

[Sangye]

If you come here, make sure you bring traveler's health insurance.

[SebastianCRO]

ill try to come.. but theres a lot of "buts" in there now.. first I have to make some $ by selling my motorcycle...
i was looking on the map,Baltimore(john hopk.) is a nice place to stay in.. 1st there are the RAVENS (to be true I'm a A BIIIG steelers fan) :P
and also its very close to Washington DC, NY .. and a lot of interesting places ..

ill try to consult with my MD,Imuno and some state institutions(health dept) if they can be of some assistance($+VISA guarantee)

have a nice night(on my side is 10.38 PM)
and a happy new day..

best wishes
Sebastian

[SebastianCRO]

hi all..
just had a need to see u all and type a little.

the last 3,4 weeks were for me like the beginning of my WG journey.
It was all going very well until I got of the Endoxan(3x50) and got 3x2.5mg/week of MTX.. the other meds stayed the same.

First week it was al good, I felt a loooooooot lighter because i got rid of Endoxan,but soon,the week after it al got to me.
Leg pain, joints, jaw was hurting and become very sensitive, fingers, got the WG rash all over my legs,feet..
and so on the third week it got so bad(pain all over my body,couldn't sleep, meds didn't help),
I went to my MD, done all the test, normally ANCA was up,so we knew WG had a word to say here. ( interesting,al other blood test, and my lungs were better )
but my doc and I didn't gave the "flare" a chance so we got back to endoxan(3x50/day) and upped the dosage of prednisone to 40 for 3 days,and now decreasing it 5 mg a day... till 10mg

tomorrow I am on 30, feeling good, have just a little pain in my fingers,and am hoping thats the way it will stay now.. so i can try to go back on Mtx or some other "nice" drug

hoping u all are doing better
greetings
Sebastian

ps..
for now my USA trip is postponed :S

[Sangye]

Well I'm sorry to hear about the Wegs flare AND your US trip being delayed. How long were you on ctx (endoxan) before this happened? Were you also on pred?

[jola57]

Hi Sebastian, sorry about your flare. It happened the same way for me after 6 months of cyclo (like your endoxan) I flared even befor going onto mtx. How long were you on endoxan? My doc put me back on cyclo for 12 months and now I have been on mtx for 8 months and down to 6mg pred and all is good.

[SebastianCRO]

I was on endoxan for about 7 or 8 months.. then I got on to MTX for about 4 weeks and than te flare happened, so im back on endox.
The last 3 months I had the same dosage of prednisone - 10 mg.

thnx for the quick replys

[elephant]

Hopefully this time around the cytoxan ( enfox) will kick wegeners &^^%$!!!

[jola57]

I would say that your prednisone should be up to at least 40 for a couple of months, that is what worked for me as well as being on it for 1 year.