Elderly patients?

[melm05]

My father is an 83 yr old WG patient. Are there other patients out there of this age?

He was diagnosed at age 65, went into remission after 18 months, and is having his first relapse in 16 years. He had complete kidney failure during the onset, but regained function rather quickly. We feel really lucky that he had so many years of remission, but there is concern about his kidney function again. No major problem yet, but keeping a close eye on it.

After reading some of the other posts I'm now concerned that he has been on cytoxan for 8 months. His last C-ANCA report was 320 (not sure what that means) and it has been "holding steady" for 4 months.

He really is in pretty good shape all things considered, and even still enjoys a short fishing trip when he feels like it. Any thoughts on the meds? What questions should we be asking at his next appointment?
We haven't had to worry about this for 16 years, so it's really like starting over.

[pberggren1]

Wegs can be very scarey especially not having to deal with active disease or symptoms for 16 years and then have it pop up again.

I hope your Dad is seeing a Wegs specialist. Where does your Dad live. The four main Vasculitis Clinics in the US are: Mayo Clinic, MN, Boston University, Cleveland Clinic, and Johns Hopkins University in Baltimore.

8 months seems too long to be on Cytoxan.

Could you give us more info like what were his onset symptoms and what are symptoms now.

[elephant]

Hi Melm, wow sounds like your dad is in great shape. To have this disease flare up at age 85, and still have kidney function...big Wow! I agree with Phil seeing a WG specialist. How is he doing?

[melm05]

He lives in Northeast Texas, way too far from any of the clinics. His doctor has been in consult with a rheumotalogist at UT Southwest medical center for all of his treatment. His GP was actually the dr. that diagnosed him 18 years ago. He has recently decided to send him to another dr. at Baylor, which should occur within the next week or so.

His onset symptoms resembled severe sinusitis, fluid on the ears, skin lesions, 50% pulmonary failure, and complete kidney failure. He was only on dialysis for 2 weeks. He also had an ulcerated esophagus and has to be on a g-tube for several weeks, but I'm not sure if that was from WG or from the massive IV chemo he had.

Last September he started having some joint pain which he associated with old age and let go a little too long. It progressed to the sinusitis-like symptoms, serious join pain, and loss of hearing (which has since returned). The dr. was also concerned about his kidney function remaining stable.

Right now his symptoms are relatively mild; mostly tiredness, redness and soreness in one eye, a few aches, and queasy stomach (cytoxan?) He had blood work done Monday to check his kidney function and will get results tomorrow, at which point his dr. will probably want him to see the dr. at Baylor. I did learn last night that he was not on cytoxan for the month of April, but started again in May. So he was on 6 month, off one, then on again for 2.

I've been reading about the alternative meds. At what point is it safe to switch to those? His doctor says that we are in "uncharted waters" because of his age. So I'm guessing there aren't too many WG patients around in their 80s. Before the flare up in Oct. he was VERY active and healthy. Not your typical 80 something (probably why he's survived this for so long), so we are very hopeful this can be gotten back under control.


Thanks for your response.

[pberggren1]

I would try and convince your Dad to get an appointment at one of the Vasculitis Centers.

[Sangye]

Hi Melm, I agree with Phil about getting your dad to a major Vasculitis center or at a very minimum having his docs consult with one from the VF. The only one in "unchartered waters" is probably his current doctor.

One of my original docs (non-Wegs specialist) used that very term to describe me when I had complications early on. When I finally got to my Wegs specialist 2.5 yrs later, he said that was a ridiculous statement.