Mom recently diagnosed with Wegener's

[Sangye]

Wow, great news about her kidneys. I hope things continue to go well.

[elephant]

The picc line can stay in a the arm longer than a regular ( IV stick) the one that delivers the meds/ fluid in the veins. I had chest tubes also from the lung surgery last year. They should be out soon. THey usually take chest xrays to make sure your lungs are clear and not filled with fluid/other...like infection...ect

[LisaMarie]

Quick update. Mom came home 7/14/10. 44 days in the hospital. Doing pretty good, complains of joints in her knees hurting. Has a hard time getting up, but once she's up, walks really good with a walker. The kitchen table looks like a drug store now with 10 different meds. Still has chest tube. Goes back to Dr. Tues, and has second round of cytoxin. Still doing dialysis 3x a week. We are getting an appointment set up with Dr. Abdou in KC. Thank you for everyone's advise to get her to a specialist.
Cindy

Been out of the loop...hope all goes well and you get to see Dr Abdou soon...keep us posted...also make sure you get your parking ticket validated ...that way parking is free and if you go tothe office at the plaza,,,it is the whole 4th floor....so just take the elevator up to 4 ...give your mom a hug for us

[Cindy R]

Has been awhile since I've posted anything. Mom is improving, but very slowly. She has gained enough strength back that she can walk without the walker now. Does stairs fairly well, and gets on the stationary bike nearly everyday to gain her muscles back. She still hasn't seen the specialist in KC yet as they couldn't get her in before 8/31. I'm super excited for her to see this specialist, because all the doctors she has right now are not doing anything. They are taking blood test and sending to the doctor that administers the cytoxin, but she never hears any results. Still doing dialysis three times a week. Should they be testing something to see if she can do without dialysis now?
She has been on 60 mg of Pred since being out of the hospital. Her face is so puffy that her left eye is nearly shut. One day at dialysis last week, she asked one of the doctors about it, and he didn't seem too sure of himself, but he told her to reduce it by 10 and take 50 a day. I've read some of your posts about having to taper off pred slowly. Does this sound right? She is on a total of 11 meds.
Like I said, I will be so glad when she gets to see Dr. Abdou in KC the end of the month...just wish it was sooner.

[julia]

She has been on 60 mg of Pred since being out of the hospital. Her face is so puffy that her left eye is nearly shut. One day at dialysis last week, she asked one of the doctors about it, and he didn't seem too sure of himself, but he told her to reduce it by 10 and take 50 a day. I've read some of your posts about having to taper off pred slowly. Does this sound right? She is on a total of 11 meds.
Like I said, I will be so glad when she gets to see Dr. Abdou in KC the end of the month...just wish it was sooner.

When I first reduced pred from 60 the doctor had me take 60 one day 40 the next. I was nervous about it so I asked my nephrologist and she said that was fine. From what I have read it is easier on your system when you reduce within the higher numbers 60,50 etc. I do remember being very emotional on the lower days when 1st tapering. i.e. when I went from 60 to 60/40 on the 40 days I was a wreck the first few days on 40.

[elephant]

Cindy your mom need to see a opthamologist eye MD and get that eye checked out. She should call and get the results or ask them to copy them for you.

[Jack]

I would be less worried about problems with Pred tapering and more concerned about the apparently random way in which the decision was made. When you are treating Wegeners, any change in medication can only be made by the specialist in charge who knows the background and has full access to all the current results.

[JanW]

I agree with Jack. I've only had one med change since starting treatment (February) and it was made very carefully, including a consultation with me in person, and only after blood work results were available.

[Cindy R]

Well Tuesday is the big day Mom finally gets to see the specialist. I've got all the paperwork filled out for her, the local docs say they have sent all her files there, and she is ready to go. She's been doing pretty good, but had a bad couple days last week. Her dialysis port clogged up, so had to do surgery to put new one in. She also fell at home, put a gash in her nose and gave herself two black eyes . Local docs lowered pred by 10mg again, so she is now on 40mg.
I'm going to her appointment next week with her and my dad. Are there any specific things we should be asking the doctor for?
Any advise is greatly appreciated. God bless all of you!! This website has been very informative for me and my family.
Thanks, Cindy R

[JanW]

Hi, Cindy: Only thing that I can say, having met some of this specialist's patients first hand, is to not be discouraged if he discounts certain of your mom's symptoms as having anything to do with WG (I don't know that there are any here who have had a rheumy who didn't discount some random symptom -- for me it was ankle pain that largely cleared up with a well-chosen course of steroids, therefore "proving' that it was inflammatory -- so almost certainly WG related). The patient I met in particular says that he often disagreed with her that her joint pain had anything to do with WG (and this is a young college student patient), and joint pain was her major presenting symptom. He is an older gentleman, Egyptian, and can be difficult to understand as well (or I found him so, speaking at the conference). The other concern this patient had was that he really hasn't apprenticed anyone in the treatment of this disease, in his office, and he is definitely up in years. I hear he is quite nice, and funny.

All that having been said, he is a clearly a giant in the field, with the respect of his peers, and I'm sure your mom will be in great hands.