New Member - On here for my mother

**MEustace** · 02-01-2014, 12:39 PM

Hello -

My mother has been diagnosed with Wegener's present in the sinuses - she has been suffering thru the many symptoms of this disease for 27 years.
Recently, she suffered a severe setback starting with what appeared to be a virus and then basically going into a rehash all over again.
She ended up in the hospital and with a UTI as well. She had some double vision - but the MRI showed no presence of what Wegener's looks like in the ocular cavity. She has not had it present in the kidneys, yet she has had some creatinine levels out of whack and many UTIs.
She has been very weak - was sent to a nursing center for further recovery and is now at my house. Her WBC and iron levels have been all over the place. Now, it's profound anemia and her sed rates are again very high. She has since started to suffer from hearing problems and now coughing up much phlegm and also having that present in her sinuses. I don't think it's pneumonia as I really think it's the Wegener's manifesting itself in other places or becoming more invasive.
I am just joining this group as I thought it might provide some sense of what the heck is going on?? She's 82 - she's lost quite a bit of weight since Nov. - I don't want her to be suffering but I'm/we are at a loss as to feeling like we are in a continual "merry-go-round" of doctors.

**Debbie C** · 02-01-2014, 12:47 PM

Hello MEustace, glad you found this forum, you will find there are quite a bit a knowledgle and caring people here. You say your mother has had this for 27 years ??!! When was she dxed and what meds is she on. Sounds to me that she needs to find a dr. that is very familar with wg. Where do you live ?

**MEustace** · 02-01-2014, 01:33 PM

She was diagnosed in the late 80's/early 90's with it. Then I think it took until late 90's to get the Wegener's sinus feedback.
We are in the Washington DC area and the doctor who has been most knowledgeable about it is in Georgetown Hospital - a rheumatologist.
He had her on methatrexate for a long time and was goal to get her off of that which he did a few years ago.
She also has meds for clots + blood pressure - coumadin and metropopole (sp?)

**mishb** · 02-01-2014, 01:47 PM

Hi MEustace and welcome.

Your mum could teach us a few things about WG after living with it for 27 years, I am sure.

It sounds to me like she will need to start on the steroids and MTX again - hopefully the doctors have already commenced them.
It certainly does sound like she is having a relapse/flare.

I hope she starts feeling better soon

**MEustace** · 02-01-2014, 02:23 PM

Well she seems to be having a development with a fever now and the cough and chunks of stuff from the sinuses - so a trip to the hospital might be on the horizon. She is supposed to go to the doctor on Monday but this seems like it may develop into worse.
The doctors have not started on the steroids or methatrexate again but I was thinking that perhaps they should.

**Pete** · 02-01-2014, 02:27 PM

Hi MEustace.

Sounds like your Mom is having a relapse. Going back on methotrexate and prednisone may be her best bet. Your Georgetown rheumy may also want to consult with one of the Vasculitis specialists at Johns Hopkins.

Hope she feels better soon.

**windchime** · 02-01-2014, 05:26 PM

Hi MEustace,

Welcome to the forum. There is a wealth of information in the archives and from the many members from around the world. It's a good place to chat, vent, and ask questions.

With that being said it's time to start asking your Rheumy some questions like how many wegs patients has he treated, what kind of treatment plan does he foresee, if he wants to wait to tx insist on knowing why. It sounds as if your Rheumy is a little complacent and maybe he needs to be nudged a little. Make a list of questions to ask him when you're in there next. It will show him you are serious and somewhat knowledgeable about the disease and tx options. Then research before the next appt so you can be. If she is this symptomatic, in the absence of any other disease, she should be in tx for wegs. She has the classical symptoms of wegs and with the cough she could now have lung involvement. Has she had a recent chest X-ray or CT? At this point I'd probably insist on one. The Rheumy or her PCP can order the chest X-ray and depending on what it shows order the CT.

Definitely watch the fever and if she has to go to the hospital make sure they know she has Wegs and that you think she is in a flare.

There is a good handbook put out by the Vasculitis Foundation that is very helpful for any one with the disease. You can find it here: Patient Information Book I hope some of this helps and that it doesn't scare you, but when wegs is flaring it's important to get started on the tx as soon as possible. My prayers are with you both and thank you for sharing your mother's story. Good luck and please keep us posted. Ask any questions as they come up and someone will answer.

**Alysia** · 02-02-2014, 03:33 AM

Hi and welceome.
I think you should find to your mom the best wg-doc availble as soon as possible and start treatment immediately.
going to the hospital sounds like a good idea. waiting untill monday is too far in those states.
good luck and please update us.

**MEustace** · 02-02-2014, 04:58 AM

This is great info!! Several years back her rheumy wanted to send her to Johns Hopkins but they came back with "not acceptable due to her age" - ?? A bit miffed over that. Perhaps contacting them again might prove beneficial - especially if I say something like "age discrimination" - guess it's worth a try.
I think her hematologist (which she just saw a week ago) is perhaps more familiar with Wegener's than her rheumatologist.
I am SOO glad I found this site!!