Hello from Rochester, NY. Just diagnosed with GPA and coming to grips

[bgifmo]

Thanks everyone for saying hello and offering some good advice. I called my GP today and will see him Monday to discuss how my appointment went, and the idea of getting a second opinion. Rochester has quite a few AIR practices, and the University of Rochester is a very good and reputable hospital. Perhaps I'll find a better fit there. Lag713's point about finding a doctor with expertise in Wegener's is a good one. I don't have any idea how many people my doc has seen with this particular AI. There must have been a good reason for my GP to recommend him, in fact he had to fight to get me in to see him as he wasn't seeing other patients. But the fact that I left the appointment underinformed and unprepared does not sit well. Not to mention, I feel the clock ticking and wonder about getting on immunosuppressants.
Some of you mentioned getting baselines. I do have the blood tests (positive ANCA) and urinalysis baselines (kidney was involved), but nothing yet on the lungs. I'm going to request that a CT is done. While we were trying to figure out what the heck was going on with my ears, my ENT sent me to an audiologist who said I had fluid in my middle ear. With the prednisone, the ear finally did clear and the next pressure test showed my hearing was normal again, but the eustachian tube still isn't functioning properly as it clicks and crackles still.
I'm sure there are other threads on this, but I've just begun to wonder about insurance and the costs of treatment. My mother-in-law asked me if the drugs were "off-label" and I didn't know what that meant. But I think that most of the drugs were in fact developed for other purposes, so I need to start asking questions about coverage I guess.

[lag713]

Methotrexate is generic (brand name: Trexall). I pay a small copay based on my insurance. It's very affordable. The only issue I had was getting the injectable form of methotrexate with a preservative (provided about 10 doses of 25mg). It was not supplied by many of the local pharmacies but they had the type without preservative which was a one-time-use (so there was a lot left over but I couldn't use it the next week). They all have the same copay with my insurance (about $15) but I had to pay a little more on injectables because I had to purchase needles, etc.

Your GP can still talk with the docs at the Vasculitis Foundation as others have mentioned. Traveling a great distance doesn't always make the most sense (time, cost getting there, cost staying overnight, and missed work). I recommend asking your GP to consult with the Vasculitis Foundation. It's what they're there to do! They want to help us get the best care.

[bgifmo]

Lag713, that's a relief. My insurance is pretty good, so hopefully it will be similar. I'll look more into the Vasculitis Foundation.
I'm hoping to find a good team here in Rochester, but it's good to have some references in driving distance if that's what is required.

[BookNut]

I am also from the Rochester Ny area. I was briefly diagnosed with Wegeners...but got a second opinion and it was ruled out. I go to a group that is associated with Rochester General. The doctor who evidently misdiagnosed me was Dr. Arango. I also go to an asthma/allergy specialist in the same group....Dr. Bingemann. when I decided I wanted a second opinion before I started on Imuran, Dr. Bingemann referred me to Dr. Michael Nead, a pulmonologist who is in the URMC system. He ruled it out based on symptoms, lab tests and a bronchoscopy. I have continued to get worse as the months have progressed, so decided to make an appt at the Cleveland Clinic, which is near where my daughter lives. I have not been there yet. When I do get there, they will probably think I am a hypochondriac. My symptoms have greatly improved in the past three weeks. I feel almost normal again, after three years of getting progressively more short of breath. It might be because my GP prescribed a long term antibiotic. Or perhaps my last round of prednisone was particularly effective. At any rate, I think it is always best to get a second opinion, so you are certain before starting some serious drugs.

At any rate, you have found an amazing group of people who will be a tremendous help to you. Good luck!

[drz]

The next time your doctor writes you a prescription, consider this: The medication may not be approved for your specific condition or age group. Rituxan was widely used for treating GPA long before it became approved for this use.

But you probably shouldn't call the medical board. The practice, called"off-label" prescribing, is entirely legal and very common. More than one in five outpatient prescriptions written in the U.S. are for off-label therapies.

"Off-label" means the medication is being used in a manner not specified in the FDA's approved packaging label, or insert. Every prescription drug marketed in the U.S. carries an individual, FDA-approved label. This label is a written report that provides detailed instructions regarding the approved uses and doses, which are based on the results of clinical studies that the drug maker submitted to the FDA.

“Many people may be surprised to know that the FDA regulates drug approval, not drug prescribing, and ... doctors are free to prescribe a drug for any[reason they think is medically appropriate],” says G. Caleb Alexander, MD, MS,a medical ethics advocate and assistant professor of medicine at the University of Chicago Medical Center. "Off-label use is so common, that virtually every drug is used off-label in some circumstances."

[mishb]

Hi Brian and welcome

You are getting and will continue to receive excellent advice from everyone here.

Best of wishes to you for a journey that is not too long and becomes 'pain free'

[annekat]

All of my meds (CTX, MTX, prednisone, Bactrim) have been "generic" (same as off label, I guess?), and have not cost me much. I'm currently on a Medicare drug plan and paying $11.20 for MTX and nothing for pred or Bactrim (we may use the brand names on here even if using generics; the one for Bactrim is long and hard to type). If it were decided I needed rituximab, or RTX, that would be a different story, as it is given as infusion and horrendously expensive; if it were covered by Medicare, there would no doubt be a copay that I could not afford, and I might have to look into the company's program for low-income funding of the treatment. If you have good insurance and can afford whatever copay, this might not be a problem. At this stage, though, it sounds like you could get by with MTX or one of the other old standards and would likely do quite well.

[drz]

Off label does not mean generic. It refers to FDA approved uses for the medicine prescribed.

[annekat]

Thanks, drz.

[bgifmo]

Booknut, do you have a new diagnosis? I'm also seeing a doctor at RGH, in the same group as your docs. I'm anxious to see my GP tomorrow to hear his thoughts, and to see if he also recommends a second opinion. At the same time, I don't want to delay treatment for something that can progress quickly and be permanently damaging. But I don't know how long it will take to get to see a second doctor either. I was lucky to get in to see this doctor in 5 weeks instead of 3 months. It's all very scary and confusing. At the very least, I can ask for more testing as others have recommended here (chest CT), just to know what exactly I'm dealing with. I hope to get more answers and more clarity this week.