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DavidJohnPearce
02-16-2010, 11:10 PM
Hi All

Got diagnosed with WG back in 1999 - it's been a journey since then and I'm glad I've found this forum.

Long term use of Prednisilone has caused diabetes and brittle bones (Ribs 4 times - twice in the last month and toes 5 times) Also have developing cataracts .
Last year had Deep Vein Thrombosis ( guess what - down to WG) I could go on ...but won't

It's hard for family to know what's happening and harder for me to remember that they are just as affected by WG as I am.

So, I try to keep positive!
best
Dave

elephant
02-17-2010, 12:25 AM
Welcome Dave. Anytime you want to vent, which is pretty normal feel free. Being on prednisone has caused many side effects, but there is no way of getting around that drug for some of us. Stay positive!

JanW
02-17-2010, 12:43 AM
Welcome, Dave!

Brooke
02-17-2010, 01:25 AM
Hi Dave, welcome!

moyan
02-17-2010, 01:42 AM
Hi David, welcome. The best place to learn about WG. Doc prescribed bonestrengthener, stomachprotector and finally, after 2 years tapering down on pred. He is NOT a wg doc :)

Sangye
02-17-2010, 01:45 AM
Hi Dave,
Welcome to the group! Wow, 11 years with Wegs. Jack is another UK Weggie who's had it for a very long time. I'm sure your experience will really help others on here-- especially the newly diagnosed.

I had clots with Wegs, also-- legs, lungs, too many to count. I hope you're recovered from that at least!

DEE
02-17-2010, 04:12 AM
hi dave i have just started to use forum over the last month although my husband has been found it helpful since i was diagnoised with wg
you are the first person to post on the forum from my area Hull i am at the early stage of treatment although have had over two years of testing before wg diagnoised finally another story
now been treated at hull royal by a wg consult who seems to be on the ball thank goodness and gp who is supportive too
do you get your treatment locally im on clyclophosohamide and pred etc at min dont know what long term treatment will be but will be intereted to hear your opinion on treatments welcome DEE x

Kimbangu
02-17-2010, 07:36 AM
Hi Dave, I'm in Scotland. You will find this to be an excellent site. I am a recent recruit, only diagnosed in Nov. 2009. Hope you can share your experience with us newcomers to the "Wonderful World of Wegener's".

Sounds like you are keeping pretty positive to me.... there are some real WG "gurus" on here, but they always manage to have a laugh and a giggle too.