Search:

I wanted to give an update on my visit. It was 100% worth the time and money. Dr. Villa Forte is so knowledgeable about this disease and it was clear how much of a difference that knowledge makes....

I was surprised--they didn't seem to want any records. They did ask for my primary, but they did not ask who is treating me for this. I asked if I need to bring anything and they said no. I'll bring...

Thanks, Pete. I'll make sure to have my labs done right before then so I have current information. I'm looking forward to hearing what she has to say. Since I started treatment I've been really lucky...

Well, a year later I finally made an appointment. I'll be seeing Dr. Villa-Forte. It's a long way to travel for a one hour visit but I will feel better knowing that I'll be seeing an expert. I like...

I just was assigned to the 0mg group. It's a pretty quick taper. Wish me luck!

I just signed up. I am also a (non-medical) researcher!

Usually, if the test comes up positive, they then do another test using titers. It is usually written as a ratio (1:20, 1:40, etc). On my labs, normal is written as <1:20. Anything over that would be...

Thanks for the additional responses.
My PR3 has been positive since I was diagnosed. It was very high at diagnosis, got almost to zero (I think 6.6 at lowest?) and is now over 120. I guess the...

I took it when I was in the hospital and taking oral cytoxan, but was not prescribed it when I was discharged (and still taking oral cytoxan). In the hospital I had four daily infusions of it.

I have a 7 year old and a 9 year old, so I have done a lot of explaining to that demographic.
I have not taken Rituxan but I did take cytoxan and am now on azathioprine.
I explained that my cells...

I am still learning about what my patterns might be as I am only seven months from being diagnosed. That said, when it was not feeling well in April my GP ordered a CMP that showed creatinine of...

Thanks for the comments!
I still get blood work taken every 2 weeks and it is the usual--CBC, CMP and urinalysis. I have had CRP and ESR on occasion but not regularly. I like the idea of doing those...

Trying to learn more about what happens when ANCA and PR3 creep up.
After hospitalization in April/May and 3 months cytoxan, my ANCA was briefly negative. ANCA and PR3 crept up a little after that,...

I wonder the same thing. I'll be following this thread. I have missed six months and have just recently switched from cyclophosphamide to Azathioprine. At first I only had amenorrhea but now I am...

I am in Western New York (Buffalo). I actually don't have a rheumatologist at the moment. I am treated at Erie County Medical Center nephrology as my primary Wegener's doc, and I also have a local...

Thanks everybody! I am getting egfr tested again tomorrow morning. Just had other blood work taken, too. Anca and pr3 are up (had been 1:20 and 6.6, now 1:160 and 16.5, one month between tests). Crp...

I spoke with the doctor. He's not worried as this is the first time the results have come back not as well as hoped. In general, since April when my kidneys were damaged and after starting treatment,...

This week's bloodwork showed what I think is a big decrease in eGFR. I just got the bloodwork results now (I get them online) so have not spoken to my doctor.
My eGFR had been as high as 57, then...

Orpheus,
I am glad you found the forum! Your story is sadly quite similar to mine. Like you, I feel lucky that a great doctor quickly figured out what was happening and treated quickly. I also had...

Thank you all for your very thoughtful responses. I was already an anxious person prior to all this, and I feel that some of that anxiety is seeping into my current status. I think it's time consider...

I was diagnosed April 2015 and since I have been home from the hospital (May) I am always worried that it's going to happen again, that I will miss symptoms and end up hospitalized in kidney failure...

Believe me, I know about the potential side effects of cytoxan. That is why I am so anxious to get off it. That, and I am really tired of losing so much hair. :) The plan for now is to try Imuran and...

Thanks everyone!
I do have an ENT that I have been seeing for 5 years. I also now have an ophthalmologist since I had uveitis and iritis prior to hospitalization. I had a great pulmonologist in the...

I live fairly close (just a few hours away) from Cleveland and have been considering making an appointment. I am curious, though--what do you get there that you can't get from a local doc who is...

Ok, I made a mistake. I double checked my prescription--I'm only on 100mg a day. Phew!!! I have no idea where I got 250 from. I'll blame the prednisone and its effects on my brain. :rolleyes1: Still,...