Introducing myself to you all for support and friendship I hope!

[HeatherR]

Hi, my name is Heather. I was diagnosed with WG Aug 2nd 2010.
Back in May of 2010 I had severe joint pain.
Was hospitalised with failing kidneys on July 29th 2010.
Lucky me I had 7 plasma exchanges and an iron transfussion.
I had two doses of 80mg of prednisone via IV
Many many tests and xrays.
I was discharged (with lots of meds) after 15 days so that I could attend my father's 80th birthday celebration.

14 months on and I'm still on lots of meds.
No longer on cyclophosphomide but on Imuran.
Still on pred.

I wake with pain and go to bed with pain.
My emotions are so flexible but I tell myself that I am blessed to still be alive.

My GP and Rhumatologist believe that I have had WG in remission since 1983 before the birth of my third Son.
the specialist told me that back then if I was diagnosed with the disease I probably would not have gone into remission as the treatment wasn't as good back then especially with the Kidney involvement. The reason I went undiagnosed was because the specialist wanted to do a kidney biopsy but I was too busy being a young mum.

Who knows why WG returned - sure don't - but it did and I'm trying ever so hard to be positive but I do find this very difficult.
I have no energy, an annoying cough, I'm tired all the time and can't concentrate for any length of time.

I'm trying not to be a "wo is me person" and I'm thankful that I found this forum a few months ago and due to the glitch being fixed have been able to register.


Heather

[renidrag]

Welcome Heather, sorry you had to find us. We have people here who a ready to listen and help any way we can. Interested in the doses of meds you are on now? Others will follow with more questions.
Dale

[vdub]

Welcome! Sure a bummer to have the prerequistes to be a member of our little club, but I'm glad you found us

Be sure put your stick pin in on our map -- WegMap
Just click on additions, add marker -simple, and select the color of the stick pin. Please don't use the candle or sunflower. The candle is reserved for members who have passed.

[Sangye]

Hi Heather, I'm glad you finally made it on! I'm sorry you're suffering with continuing symptoms and side effects. I still have most of those symptoms more than 5 years post-dx, and I know it can really get you down.

How much pred are you on now? Are you in remission or is the Wegs still active? I had "smoldering" Wegs for 2 years, even though my docs thought it was in remission.

[Widthofacircle]

Hi Heather and welcome.
Sorry to hear you have been having a tough time. It seems there are no set rules with Wegs. It affects all of us in different ways. My rheumy tells me I am "sort of in remission". I do not have any of the serious symptoms like joint pain and swelling and kidney and lung involvement that I had in the first year following diagnosis which was back in April 2009 however I have a constant runny nose ,sore eyes, tiredness and well I won,t go on but it is a pain. I am still on Pred, Cellcept, and Septrin.
I hope your condition will improve and I would like to say you have found the best site here for advice and support as there are some wonderful people here who share their experiences for the benefit of all members. I would know very little about this affliction had it not been for the people here
Brendan

[Psyborg]

Welcome to the forum Heather.

[HypnoticEyez]

Welcome to the forum Heather. Sorry that you qualify to join us. I hope things get better for you.

[Dryhill]

Welcome to the Forum Heather. I hope you go back into remission very soon.

[elephant]

Welcome Heather, be patient ...it will get better.

[Dirty Don]

Welcome Heather...I, like you, have discovered through medical history discussions with docs that I most likely have had WG for many years, but was dx this August...darn near died as a perfect storm hit me this summer. But, am in early treatment & remain hopeful...mostly due to good docs and aggressive treatment...and THIS forum...my learning curve on here has taken off...I ask honest questions and get honest answers/perspectives. This is a great group of people despite our Weggie tendencies!! LOL...best to you...ask lots of questions!