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Great news Karen. I've been off all meds except BP meds for about a year and a half now. Unfortunately I lost most of my kidney function (have 15% or so) before they got things under control so I...

Hey all, hope everyone is doing well.

Hey I have a somewhat minor but troubling issue of Vitiligo. I was told it is not uncommon for kidney disease patients (which I am thanks to Wegs) to get it...

I cannot remember where I had heard about the possible link to allergies but I do read frequently that wegs is thought to be triggered by an "initial inflammation causing event" which of sounds like...

First I am not on this board much lately and I have not read all of this thread so if this has been stated already then I apologize. My wegs is in remission, it started somewhere I think around 4 or...

Thanks Pete, I have learned as I bet everyone on here has, to take such news cautiously and not get to excited. Easy to get carried away by what appears to be good or bad news.

Hello all,

I had a visit to Barnes Jewish Hospital yesterday to get a 2nd opinion on my care for Wegs. What I heard is that it sounds like I am getting the right care. As a reminder I went off...

My Rheumatologist basically said the same thing, that since I don't appear to have any symptoms that he was not worried.

My Kidneys were down to something like 10/11 percent, now up to perhaps 15%...

Welcome, we are practically neighbors, I live in east central Illinois.

Where do you go for your treatments?

I went through 4 years of virtually constant sinus infections. Nobody ever found wegeners then, it wasn't until I broke out in a rash and got really sick that they started looking closer. Wegs had...

Hey all, I was diagnosed in 2012 with Wegs and essentially quickly (in a month or less) lost 85% of my kidney function. It was worse for a while but has slightly improved in the last year. Lots...

Hey all thought I'd post and update

Start of the year I started having some issue and it has taken time to sort them all out. It was starting to look like my Wegs was back but it would seem that...

Debra, hoping you feel better soon. I've actually taken a positive turn. I think a cold I had was really dragging me down. I diagnosed my strength problems and they seem to be heavily related to two...

Thanks all. I'm starting to think it is a flare up :-(. Off all meds right now except an antibiotic for latent TB. I was remembering today how stiff and sore I felt last year at this time when I was...

Hey all hope you are all doing well

Quick update on me - doing well, still doing nightly pertineal dialysis but my numbers are looking good. Especially happy that my albium numbers are back in...

I was noodling about all of this and wonder the following - I suspect having weak kidneys is a huge factor in how much of the medication is in your blood. If your kidneys are weak like mine then...

BTW for me personally I think Pred is a great short-term symptoms mitigation strategy. It does not cure anything however, it only deals with the symptoms. Long-term for me I think it is a no-go and...

I was diagnosed in March of last year. I was started on 80Mg of prednisone and that continued for a couple months, then down to 40, then 20, then 10 then 5 and now off for a couple weeks. All in...

Update

Just back from see the optical neurologists and here is the dump

Here is the dump on my eye issues
My right eye has improved – noticeable vision improvements.
The swelling of the...

Pete,

I hope nobody gets the impression I know how to live in the present, but I have certainly been forced to move in that direction. There was a time this year that I realized that I had...

To me one of the biggest lessons learned is to try to stay in the middle, don't let the highs sweep you away and never let the lows take you down. When you think it is all going right be prepared...

Wow another horse person!!!!! We need to talk Barbara :-)

I am currently doing peritoneal dialysis - six months now
and I am a horse person so we should exchange phone numbers and chat (when you...

Hey all an update...

My Neurologist took me off Imuran the other day.
Today he told me to stop the Prednisone end of this week

YAH!!!!!

Started Isoniziad last Friday
Optical Neurologist...

Thanks all,

My Wegs's is currently "Under Control", my kidneys were barely hanging on but now are improving and I might actually get to go off dialysis soon, YEAH!!!

TB Blood test was a result...

Just told I've got latent TB. Hmmm reading up and it seems TB can also has the same PR3antibodies show up. Can also attack kidneys, very similar symptoms to Wegener's. Now seriously doubting I have...

Hey all, I am doing pretty well lately, wegs in under control, kidneys are doing a bit better. However, around in August I started experiencing some troubles focusing, blurry vision. I recently saw...