New Dx looking for information and perhaps comfort.

Thanks for letting me join. My husband has been hospitalized for the last 11 days and we just received the diagnosis of Wegeners from the kidney biopsy. He had 3 doses of steroids and today a dose of Cytoxan. Daily dialysis on day 3 to 6 then every other day since. Dialysis tomorrow and hopefully he will come home the following day. The plan is 3 days per week of dialysis and infusion of Cytoxan once every three weeks with daily prednisone until remission. His nephrologist " isn't hopeful for return of renal function". What questions should we be asking? My husband is 64 years old and has,in hindsight, had many problems related to this disorder for many months. Joint pain, conjunctivitis, sinusitis and occult blood in his urine as well as protein. He had been seeing his PCP, ENT, Urologist and podiatrist since July. I'm feeling discouraged and he is so disheartened. Thank you all.

Welcome to the group. I was on Cytoxan for 3 months. Moved to Rituxan about 2 weeks ago. Wegs affected my sinus, eye, and lungs.

My thoughts go out to you and your family. It is hard to deal with this and the holidays.




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Welcome Audreya,

It sounds like your hubby is getting pretty good care. At least he's on the proper meds. What are his dosages? I took 150 mg/day of oral cytoxan for 16 months and started on 60 mg/day of prednisone. I lead a pretty normal life six years after disease onset. I had ear, sinus, and lung involvement at onset. Except for my right ear, the damage the disease did is healed.

Some questions you may want to ask are: How many Wegener's/GPA patients does this doc see? If the answer is a two-digit number, I'd consider asking for at least a consult with, if not a referral to a Vasculitis specialist. What is the treatment plan for the next 4-6 months? Cytoxan is good to induce remission, but it's tough on the body. Make sure your hubby stays hydrated and urinates whenever he feels the urge. Cytoxan's metabolites are hard on the bladder. What other drugs are being considered for maintenance after stability/remission is achieved? Why is the nephrologist so pessimistic about your hubby regaining renal function?

This forum will give you a lot of experience based information. You should also bookmark the Vasculitis Foundation's website. There, you'll find more info about the disease and a list of doctors who specialize in treating it.

I was your hubby's age when diagnosed. I was sick for about a month before spending a week in the hospital. Up until then, I had been in very good health. I was also pretty fit.

A couple of suggestions: If you're not doing so already, eat clean and healthy - more fresh fruits and vegetables and try to eliminate processed/convenience foods. Also, when your hubby feels better (and the doc approves), start getting some exercise. Start slow and build up gradually. Hopefully, he can find an exercise routine he enjoys.

Hope this is helpful. Good luck to you both. Merry Christmas and Happy New Year!!!

Sorry to hear your husband had to get this disease but there is a light at the end of the tunnel. Of all the drs. you mentioned you did not say anything about a rheumatologist. This is one of the main drs he needs on his list. And like Pete said ,you might want to look at the Vasculitsis website and see if there is an expert kidney dr near you or one that will consult with your dr. For him to say so early in treatment that he will not get his renal function back just does not seem right. My involvement is mainly my lungs so I am not the one to say much about kidney involvement,but there are many on here you have it and am sure they will chime in to help. Take care and try not to stress to much..not good for either of you. Hope you are able to have a nice holiday.

Thank you Pete. I shall be asking questions tomorrow. I just spoke with my husband and he is thrilled that after just starting treatment his hearing in his right ear has returned! Has been totally deaf in that ear for months. Tomorrow I will find out and post doses of his current meds.

We don't have a lot of options locally for doctors as we live in such a rural area. Clearly we need to look for opinions with professionals that have more experience with this disorder. As far as staying hydrated Pat is at this time is producing no urine so he isn't allowed much fluid. His nephrologist stated that his kidneys sustained catostrophic injury.

Thank you so much for the kind words. I feel encouraged.

Hi Audreya - keep the faith! Don't get discouraged! Where there is life there is hope.

My kidneys got hammered for 2 years and I was totally untreated. By the time the docs figured out what was wrong they told me I probably wouldn't make it.

That was in 2000.

I've had a few "You're not gonna make it." talks since then. Yet here I type. I was told to keep the faith. Don't give up.

Carrsville, VA is not that far from Raleigh / Durham or even Maryland and D.C. - If the doc said "Catastrophic Kidney Injury" he may have good reason BUT I would get a second opinion.
There are well known experts in wegeners nearby. I drove 4 hours to get a second opinion in 2000, which was worth it.

Hope this helps.
Prayers to you and your husband.
Best wishes,
Tom

Thank you Tom. We are looking into a second opinion right now. While the numbers are scary, it has been pointed out to us that we are VERY early in the game and much could change. This group is wonderful.

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Originally Posted by Audreya

Thank you Tom. We are looking into a second opinion right now. While the numbers are scary, it has been pointed out to us that we are VERY early in the game and much could change. This group is wonderful.

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Hi! How is your husband doing now? Has the doctor talked about using Rituxan to treat the WG? If he can't drink much because of his kidneys, the cytoxin could cause long-term problems, such as bladder cancer. Cytoxin used to be the go-to drug for WG treatment. Several centers, including Mayo, participated in the RAVE trial which demonstrated that Rituxan, also called Rituximab, was by far the better treatment. I may be misinformed, but I believe that Rituxan is the FDA-approved drug to treat WG. My husband was a part of the trial. We were told many times that he really needed to pushes fluids, 100 or more ounces a day if memory serves correctly, to flush the med out of the bladder.

I understand the rural issue. We live in a rural area as well. We travel about 700 miles to see the team that deals with his WG. It's worth it.

Good luck to you. The best advice I can give is to become an expert in WG. A chance cab ride with a Swedish doctor left me with that piece of advice. It was the best thing he could have said. Hang in there!!

Make sure he is also getting Mesna with Cytoxan infusions to protect his bladder.

Sorry you need to be here but glad you found us. Many of us have been through similar scenario to what you describe. It took awhile but my kidneys gradually recovered to almost normal function after a few years and I was older. Getting expert consultation is essential to be sure you are getting the best treatment. Today technology allows the experts to consult on cases anywhere.

The fact his hearing came back is great. Mine didn't and my lungs were also damaged but one can and usually do adjust to a "new Normal' life after the damage and learn to live with Wegs (GPA). Many of us needed or benefited from some counseling and mental health help too as weathering the loss and stress from the diagnosis and change is life style is a lot to handle. He is lucky to have you in his corner but both of you might use some more help to handle your stress and adjust to the changes.