New, in Palm Springs

Greetings and thank you for being here. I feel somewhat encouraged to know that there are others with this ailment.

I had been choking on sputum from my sinuses for 5 years and then started coughing up sputum from my lungs earlier this year. My ENT suspected Wegener's so some tests were run. In June i started feeling weak, feverish, no appetite, ready to die. I was in kidney failure made worse by a pulmonologist prescribing Simbicort. I got off that, was given Zofran for the nausea and was able to eat again. Received fluids for 2 days for the dehydration. Tests indicate GPA and a biopsy is scheduled for early November. My rheumatologist has mandated no alcohol, no sugar, tho he kindly said i could have chocolate. All doctors have stressed lots of water.
My eyes are pinkish, my hair is falling out and I cough up sputum about 12-20 times a day. My voice is shot, but last kidney tests indicate that I am halfway to normal! I feel fine now.

Is this called being in remission?
Treatment will be steroids with rituximab and azathioprine. Should i do it?

Where am I in the progression of this thing? Did it start with the sinuses over 5 years ago, or in June when my kidneys and lungs went kaput?

Thanks for your thoughts,

Jan

@Janzian

Welcome to the club no one wants to join. With proper treatment, you have a decent shot at getting back to normal.

The treatment plan you mentioned is pretty standard. The steroids will reduce your inflammation and suppress your immune system. The rituximab and azathioprine will attack the cells that are attacking your body.

This disease manifests itself in many ways. Sinus involvement may have been your disease onset. Certainly, the kidney failure is a stronger indicator.

Remission is generally defined as the absence of disease activity/symptoms. Hopefully, you’ll get there sooner rather than later.

Thank you Pete,

I clicked on "Reply to Thread". Hope that is the right process.
I appreciate your response. Sometimes, at 72, I just figure I'm done. I suppose I should accept the treatment tho, huh.
What do you fly if not a jet? My husband has an Extra. It's a small German acrobatic plane, but he flies in straight lines, so he says.
Beautiful little ones in your photo,

Now do i hit "post quick reply" or "go advanced"? Is advanced for seniors?!

Jan

Hi Jan,

You’ve figured out the site well.

I have about 150 hours in single Cessnas. Gave it up because of the cost. Got a sports car instead. Your hubby’s plane would be a blast!!

I’m 73. The grandkids belong to my son. We have a lot of fun with them since they live nearby.

Hope you feel much better soon. Just keep on keepin’ on...

Hi Jan,
Take a deep breath. I know the diagnosis can be frightful. But treatment has come a long way. So far we know there is no cure, but once your docs find the right plan for you, you will feel you are on more solid footing.
This disease does not discriminate by age or gender. One man on this site has had it for over forty years. We have children, working people and the retirees. I consider myself lucky to be in the last group. When I read about a mother of a child with it, it breaks my heart.
Could you have had it for the last 5 years? Some doctors suspect mine was smoldering for years. I had what I know now to be a half dozen unnecessary sinus surgeries. I was also proned to horrible colds, bronchitis and pneumonia. Three years ago my ENT diagnosed me properly. What I read on the internet at that time was devastating. I figured my goose was cooked. It took me a year and a half to get on this site. Then I saw the light. I found a Wegeners specialist, VERY IMPORTANT. My specialist is a few hours away and well worth the trip.
I have gone from four RTX infusions, four times a year, to one large dose infusion twice a year. I am up and down on the prednisone (you’ll read about it on this site) and I take Bactrim three times a week. I personally could not handle AZA, but many do without a problem.
My first year I was put on methotrexate and folic acid. For me this was not sufficient.
Yes, my life has changed. The changes were my choice. I was doing things, book club, art classes, Bunco, that I no longer partake in. These were with groups of women in a closed room. Invariably someone showed up with a cold, for me it would turn into a flare. People don’t think. I live in a community with a lot of retirees. So now I limit who, what and where I will be. If it is flu season and we are in a large group or a medical office both my husband and I wear clear gloves and masks. Not everyone with this disease has it sinus related, but I do and this works for me.
Other people have ears, eyes, lungs and kidneys. My first year, it hit my mouth and I lost a number of teeth. My hair started to fall out and I stopped coloring it, then I bought a bunch of salt and pepper wigs. Today I have beautiful teeth (implants) hair is always styled (wigs) and because the prednisone blows your face up, I don’t have a wrinkle.
Yes, there is a bad day now and then, but I walk into a restaurant and see people in wheelchairs and walkers. Then I come home and read the obituaries from my hometown and see photos of classmates from high school and college.
You will learn to pace yourself. I will be seventy in January. I have slowed down. But as you regain your strength, you will see how important it is to have a positive attitude. I still plan mini vacations, I cook, but differently. I read and I knit. I shop, but no longer four stores in one day.
I stay away from the 2 s’s. SUGAR AND STRESS
Please, don’t be afraid to ask us anything. The people on this site gave me the strength you see now. Tell us how things are going. You live in a gorgeous place. Love the Main Street of Palm Springs. Years ago there was a shop there called UP YOUR ALLEY. I got a kick out of how they answered the phone......up yours!
Masha

Masha, that is so kind of you to write. I am feeling so much better, just knowing i am not alone and that so many of you are having positive experiences. Yes, we are fortunate to be retired, with few responsibilities and in control of our schedules. I can't imagine having a career and children to raise with a weird illness like this.
Tell me, does your medicare supplemental cover treatment or your drug plan or both?
Hugs,
Jan

Grandkids are the best aren't they! I'm 72 and think this is the best age ever, with this weird wegener's exception.
Is treatment covered by medicare supplemental, drug plan or both? or not?? My doc seems hesitant to start - maybe because my husband wears crappy shoes and ratty cut offs he thinks we can't afford it and is trying to be sensitive. Maybe he's just not sure of diagnosis.

Jan

Hi Jan,
We are on supplemental with plan F. It covers everything,
I cracked up at your description of husbands dress code. Mine wore a three piece suit, tie and starched (dry cleaners not me) white shirt for 45 years. Now that he is retired he looks like a street person.:lol:
Masha

Thanks Masha. I'll see if plan F is what i have.

My sweet husband has rebelled also. Someone a couple of years ago asked him if he could use $5.
I'm rebelling the other way. Since I no longer have to look professional i can dress like a floozy if i want. You can get away with anything in Palm Springs.

Jan

Hi Jan,
I do hope you are feeling better now. I know it can be overwhelming but us people diagnosed with GPA are hard core and never give up. You got this! We all are pulling for you!
Natty


Sent from my iPhone using Tapatalk

Hi Jan,
Just two things.
1) How much experience does your Rheumatologist have with Wegeners patients? Don’t be afraid to ask. If you change docs, even if it means a drive to a specialist, do it now. There is no point on waiting.
2) The billing department of your doctors office should be able to tell you how much of your treatment is covered by the Medicare policy you have. Our supplement costs $433 for both of us.(monthly)
Different factors go into this determination.

I have received infusions at two different locations. Both places have made sure I am fully covered before appointments are made.

Masha