Disease extension/spread

[Alias]

I was diagnosed with limited/non-severe GPA several years ago. I have been in a drug free remission for months and mostly feeling well. My symptoms have mostly been limited to annoying sinus/nasal and ear issues, which range from very mild to pretty bad. I treat with generic flonase, and generic claritin and nasal rinses. But, I have had some troubling symptoms lately that could be GPA related, but could easily be something else, for example an unusual amount of joint pain that comes and goes. Anyway, my question for the group is: has anyone had limited disease like mine that has later spread to other body parts, like lungs or kidneys? My understanding is that this would be unusual after successful induction of remission?

[Pete]

The joint pain could be symptomatic of a flare. The first time I got off pred in 2014, I started having roaming joint pains after about two months off pred. I thought it was just part of aging. Sed rate and CRP were up and creatinine took a big jump, confirming the flare.

[vdub]

Sorry to hear this, Tom. My guess is yes. I think the joint pain could very easily be GPA related. My pain generally roams around -- tonight its shoulders and legs.

[Masha]

Tom, How long since you have seen your Rheumatologist for the joint pain? And when did you last see the ENT for sinus problems? My docs told me if I don’t get right on it, the disease could travel.
Masha

[vdub]

I was going along quite smoothly, or, at least, as good as I thought I was going to get. So, I tried over the last year to really avoid doctor appts. Things started to take a change for the worse several months ago and I finally broke down and made an appointment with my rheumy. I see him next week.

I have a couple diseases other than Wegs. I think the one that is kicking up is psoriatic arthritis. It is getting very difficult to type, so most messages are quite short. Part of it might be just getting old. However, I'm only 67 -- my parents are still alive at 95 and 90, so I should have a lot of miles ahead of me.

So, anyway, Tom -- time to get an appointment. BTW, I see they let Dallas back into the Iditarod. That's good. I think everyone knew he was innocent.

[Alias]

Thanks all for the replies. Masha, I did see an ENT a few months ago. Everything in that department is stable, but not comfortable. Once GPA attacks the ears and sinuses, it's not going to get better. Winter up here means the symptoms worsen, but that's not an indication of disease activity. I'm more concerned about the joint pain, as it is new for me. I see local rheumatologist next month, after returning from Hawaii. I have a theory (actually a hope) that warm weather and a diet of fruit and fish will calm down whatever is going on.

[vdub]

warm weather and a diet of fruit and fish will calm down whatever is going on
Brilliant reason to go to Hawaii, Tom! I hope it works. My joint pain subsided for a while today. I doubt its the start of a trend, though.

[John S]

Personally, I don't believe there is such a thing as "Limited GPA". I think it's like being a "Little Pregnant".
One Doctor told me I had Limited Wegener's but then Dr. Villa Forte reviewed my records and biopsies and diagnosed me with GPA. If she hadn't done that, I would still have at least one foot in the grave. She has been treating me for a couple years and I feel so much better. People that met me when I was sick say that they cant believe I'm the same person now.

[Pete]

Dr Villa Forte is the best!!!

[vdub]

I have to agree with John. My doctor told me my GPA was "localized". And, it was, at first, but then it spread. I think "localized" is a better descriptor than "limited".

[Alysia]

My wg started in 2008 in the lungs and nose right after. Months later it hit my ears and joints. In a flare in 2015 it also hit my eyes. And at another flare in 2017 it hit my skin or whatever it was as I had bleedings under the nails. I know weggies who have more organs involved in time.
Joints pains are def one of my indicators for wg activity and one of the symptoms that my wg dr. is mostly serious about.
Sorry for you, Tom, and vdub. Please consult with your docs and update us.