My Wifes History with Wegeners

[DJS]

Part I. During the late winter of last year, 2012, my wife started having a bad sinus infection and at some point, she mentioned that she couldn't hear with her left ear. On April 5, she had an appointment to get a Tdap shot for whooping chough and she was going to have them check for wax in her ear but forgot. On April 9, she called a walkin clinic to have her ear looked at and washed out they perscribed an antihystimine and off she went.

On April 17th she went to her Family DR and he prescribed a number of things related to sinus including 20 mg tab of Prednozone and a daily use of a Nasal Flow Pot (neddie Pot) and a sinus rinse.

April 25th not getting better so a prescription for Zipro plus the Prednozone

May 4th Family Dr again with a new antibiotic called Cipro and a albuteral inhaler plus zyrtex

May 5th was to be her 50th Anniv of her nursing school but she was too sick to attend.
May 6th was spent in bed and during the night she got up to get a drink and fell because she was too dizzy to stand. At 5am on Monday she said that perhaps I should take her to the ER because she just couldn't be on hold all morning trying to get another appointment at her dr.
From this you might gather that we are speaking of a 71 year old former nurse, who was in great health.

[DJS]

The Wifes Story Part II
We chose the New North Memorial Hospital in Maple Grove for the ER because they would have access to her records from her normal Dr. As she told her symptoms to the ER dr, they ordered a MRI of her head, and a chest X-Ray. I had to leave to take care of her dog by taking it to doggie day care. When I got back to the hospital they said that she would be admitted. I left and came back later in the afternoon when I could speak with the hospital doctor. They were alarmed at her lungs because the x-ray showed that they were full of something, and that they have never seen such a condition. They were about to put her in isolation because they feared TB. But they didn't and then scheduled her for a Brochoscope and a biopsy to try to determine what was going on. In the mean time they were thinking of something called Sarcodosis and started her on a high dosage of Prednozone, around 60 mg.
At one point during this first week they transfered her to ICU and had her on an IV and heavy doses of oxygen.
She was one sick puppie, but she was getting great care from the Lung Doctors. It took another week to get the diagonis back that she had something called Wegeners Granulomatosis. I had to communicate that to a lot of people who were wondering what the heck was going on because they don't keep someone in the hospital for that long. The lung DR took charge and scheduled kidney and bladder tests to see and anything other than her lungs and hearing was affected. Also he scheduled a ENT guy to examine her ear. He said that every thing that was being done was being done and that her hearing was gone in that ear and that there was a hole in her ear drum. He would deal with that when she got out of the hospital.
She was discharged from the Maple Grove Hospital and sent to a Resporary Rehab facility in the Twin Cities. And she was perscribed two Pills of Cytoxin per day to be taken with a lots of water to prevent damage to her Bladder. He also refered her to a Reumotolgist in Edina and she took charge of her medicine and Blood tests. In addition she was perscribed a medicine called Meprone which is supposed to control parasites from getting to her lungs. The side effects of 60 mg of Prednozone were positive, they filled out her wrinkles, and she didn't lose all of her hair, but what was left didn't grow so she didn't get to her hair gal for some time. The next part will be from June to December of treatment.

[DJS]

My Wifes Story part III
She was out of the Hospitals by Memorial Day and began her untold trips to a variety of specialists. The main driver of her plan was the Rheumatolist which was basicaly to have a blood draw every two weeks and as the numbers improved, reduce the Prednozone and then switch the cytoxin to Methatraxate. She also had a bone density scan to see where she was when this was started and then told to avoid Airplanes, crowds, sick people etc, because the goal was to keep the white cells in balance. It seemed to me that her immune system went nuts and that the process was to shut it down and then let it build back up.
My wife really worked to try to get back into shape, she walked her sheltie about everyother day using a walker. Eventually she managed to get up to a mile and a half, then she switched to using a cane. And she got into the habit of taking naps in the afternoon. So our DR schedule was the Rheumie every month, Lung, Kidney, bladder and ENT every six months and two blood draws a month. She was able to switch from the Cytoxin to Immuran at the end of December 2012, and finally taper off the Predinzone by the end of February 2013. In the blood draw in early May her white cells were about zero so the rheumie took her off all of the treatment except for Mepron for three weeks. My wife decided that she would stop that as well because it was a preventative. Then in June she started up with the Immuran again and she goes in tomorrow to consult with her Rheumie. Right now she feels great, looks good, but still needs a nap and that isn't all bad.
She waited until Mid April to have her BAHA implant done which was a surgical procedure in a outpatient clinic area in the Maple Grove Hospital. Her Rheumie asked why in the heck she wanted to subject herself to that kind of procedue when she could hear well when she turned her head. Her replie was to hear her husband. When we ride in our car, her left ear is by where I speak. I offered to let her drive so that her good ear was toward me and she dismissed that out of hand. Same way at home, our chairs are in the wrong place. I did buy a gadget, the Bose TV speaker thing and the only feature that she liked was that she had her control for the volume. I being the husband had the TV control but she got the sound control.
So that is the story so far, Immune system goes nuts, the drugs shut it off, and now to turn it back on and see what is necessary to keep it from going nuts again.

My next episode will be on the discussion thread.......

[Dirty Don]

All sounds very familiar DJS...best to you both.

[mishb]

Hi DJS and welcome to the group.

Your wife has certainly come a long way since this all started. It sounds like she is in good hands.

We look forward to hearing more of her progress,

Take care

[annekat]

Welcome to the forum, DJS! My best to your wife, and she has done a great job of working her way through this. Her story sounds so familiar, yet each one is a little different. It sounds like she has made good progress and has been able to get off the worst of the drugs sooner than many of us. As you know, it will be an ongoing process to stay healthy, but it sounds like you both have a good handle on it. We look forward to hearing more and are available to comment on any small or large aspect of what your wife is experiencing, and you, too, for that matter. You have come to the right place, for sure!

[Psyborg]

Welcome to the Forum

[DJS]

My Wifes Story IV
I said that I was going to continue this elsewhere, but we returned from a visit with her Rheum... DR this morning and my wife appears to be in remission or what ever that means. She is taking 50MG daily of Azathioprine to control her immune system. I guess the main thing to watch is her reaction to that and her white cell count. So we see the Rheumie every two months and have a blood test every month. So for now back to daily living and the next medical event is her new hearing device to be attached to her skull around mid July. She asked if there is a flare up how will I know? The DR said, you'll know!

[annekat]

Well, congratulations to your wife on being declared in remission! There are a bunch of us on here that are in a remission maintained by medications, and others, a few, who have actually attained a drug-free remission. A lot of us are doing well at present but always concerned about avoiding flares... so we are in the same boat as your wife. There is lots to be learned on here about all of this in the archives as well as in current threads. The doc is probably right that a flare will be pretty obvious, although in my case, I got a cold and while recovering from that was when I think the flare started. And then it proceeded gradually enough that I wasn't sure whether it was a flare or I still had remnants of the cold. And my doc wasn't convinced it was a flare, either, until it got worse and I started getting night sweats, and the blood work told the story. So it isn't always that clear cut. In my case, the flare was knocked out by an increase in meds; I'd been undermedicated since my drugs were changed, is what I think. Your wife is probably already very good at knowing how she should feel and when things don't feel right... that will be a clue. If she has a flare, I hope it may be easily resolved, as mine was.

[Mikek]

Seems like your wife started on the Wegs ride about the same time as mine although yours sees to have had a very widespread involvement. All the best to you both with the remission.

[drz]

My Wifes Story IV
I said that I was going to continue this elsewhere, but we returned from a visit with her Rheum... DR this morning and my wife appears to be in remission or what ever that means. She is taking 50MG daily of Azathioprine to control her immune system. I guess the main thing to watch is her reaction to that and her white cell count. So we see the Rheumie every two months and have a blood test every month. So for now back to daily living and the next medical event is her new hearing device to be attached to her skull around mid July. She asked if there is a flare up how will I know? The DR said, you'll know!

I had to be in remission for over a year before they would do the BAHA surgery even though it is a minor surgery. I was also on a lot more azathioprine (175mg) and around 10 mg of pred at the time. But the surgery worked well for me and is a great improvement over being deaf.

[Alysia]

Hi DJS,
your writing is great, you know how to tell a story :thumbup: and also how to care for your wife :thumbsup:
It seems that she is doing very well. that is encouraging for me.
remission is great. Im still waiting for mine... :sad:
welcome. :wink1:

[Barbara N]

My Wifes Story part III
She was out of the Hospitals by Memorial Day and began her untold trips to a variety of specialists. The main driver of her plan was the Rheumatolist which was basicaly to have a blood draw every two weeks and as the numbers improved, reduce the Prednozone and then switch the cytoxin to Methatraxate. She also had a bone density scan to see where she was when this was started and then told to avoid Airplanes, crowds, sick people etc, because the goal was to keep the white cells in balance. It seemed to me that her immune system went nuts and that the process was to shut it down and then let it build back up.
My wife really worked to try to get back into shape, she walked her sheltie about everyother day using a walker. Eventually she managed to get up to a mile and a half, then she switched to using a cane. And she got into the habit of taking naps in the afternoon. So our DR schedule was the Rheumie every month, Lung, Kidney, bladder and ENT every six months and two blood draws a month. She was able to switch from the Cytoxin to Immuran at the end of December 2012, and finally taper off the Predinzone by the end of February 2013. In the blood draw in early May her white cells were about zero so the rheumie took her off all of the treatment except for Mepron for three weeks. My wife decided that she would stop that as well because it was a preventative. Then in June she started up with the Immuran again and she goes in tomorrow to consult with her Rheumie. Right now she feels great, looks good, but still needs a nap and that isn't all bad.
She waited until Mid April to have her BAHA implant done which was a surgical procedure in a outpatient clinic area in the Maple Grove Hospital. Her Rheumie asked why in the heck she wanted to subject herself to that kind of procedue when she could hear well when she turned her head. Her replie was to hear her husband. When we ride in our car, her left ear is by where I speak. I offered to let her drive so that her good ear was toward me and she dismissed that out of hand. Same way at home, our chairs are in the wrong place. I did buy a gadget, the Bose TV speaker thing and the only feature that she liked was that she had her control for the volume. I being the husband had the TV control but she got the sound control.
So that is the story so far, Immune system goes nuts, the drugs shut it off, and now to turn it back on and see what is necessary to keep it from going nuts again.

My next episode will be on the discussion thread.......

It is all too familiar symptom wise but is sounds like you got more advice and information than I did. Take care and stay positive.

[Barbara N]

Alysia, I am still waiting for mine too. We can wait together and one day, there it will be.; no symptoms and a glorious remission. It will come, you keep praying and I will keep riding. You take care Alysia, your are so sweet, I hate the thought of your suffering or feeling alone. I was in remission once for three years, so it does happen. A big hug from Barbara

[Alysia]

Alysia, I am still waiting for mine too. We can wait together and one day, there it will be.; no symptoms and a glorious remission. It will come, you keep praying and I will keep riding. You take care Alysia, your are so sweet, I hate the thought of your suffering or feeling alone. I was in remission once for three years, so it does happen. A big hug from Barbara

thank you Barbara. you are very kind. here is a hug for you too :hug2:
we will celebrate remission when it will come :hug3: