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

[Pete]

Hi Brian,

Welcome to the forum. Lots of good folks here.

You may want to either have your doc consult with a Vasculitis Foundation medical consultant/expert or take a trip to Cleveland Clinic for evaluation and establishment of a treatment plan. Drs Gary Hoffman, Carol Langford, and Alexandra Villa Forte are all excellent. I see Dr Villa Forte and am most pleased with her care.

Good luck!

[lag713]

I agree that your doc should consult with those at the Vasculitis Foundation. It would be a mistake to wait 6 weeks to start taking medications to actually treat the disease given that many drugs take months to go into full effect. Prednisone makes you feel better by bringing down inflammation but it only treats the symptoms, not the disease. Given your symptoms, I think methotrexate would be most appropriate but that's something to discuss with your doctor. Cellcept has a higher relapse rate compared to methotrexate.

I would recommend that you get a CT scan to see if any damage has occurred in your lungs, urinalysis and blood work to check your kidneys, a hearing test to see if your hearing is intact, as well as an endoscopy of your sinuses, trachea, and upper lungs. I was just diagnosed in January and I've had the workup. Best thing to do at this point is establish a baseline and preserve the functioning you have by getting ahead of the disease - prevention is invaluable. Don't let the information on the internet scare you. Let this be an opportunity for you to take charge of your health and well-being. You can live a long and healthy life if you are proactive about treatment, checkups, treatments, etc. It is a chronic, lifelong illness so you will need to acknowledge that the disease can become active again at any time and you will want to be on top of it.

I know of Dr. Shapiro (rheumatologist) and Dr. Lebovics (ENT) in NYC but that would be a trek from Rochester. I make the trip from central Connecticut every 3 months to see Lebovics because of his expertise - he sees a lot of weggies every week whereas my local rheumatologist and pulmonologist have seen less than 5 each in their careers. Dr. Lebovics put me at ease because he is very knowledgable. Given your location, there may be docs in Canada that would be easier to access.

I recommend the resources collected as "stickies" in the General WG Chat forum. I'm sorry that you received this diagnosis and are floundering through the information online. You have support here. I know you must still be in shock. It took me a few weeks to really accept it as being real. It will take longer to come to terms with what it means. I still feel like I freak out whenever something goes wrong but I am learning to roll with the punches and accept what is out of my control.

[vdub]

Sorry to see you join our little elite club, Brian. I think it was Will Rogers who said "I wouldn't want to belong to a club that would have me". And, that holds true here. But, here we are. You'll go through ups and downs. Some people have some rather mild cases and continue on with life in a rather normal manner. While others, really have a bad go of it. I have been in the "bad go of it" area for the past 5 years. It was very depressing at times, but we kept plugging away and finally got the right mixture of drugs. For the past 5 months, life has been good. Lets hope you can reach karma real soon. Welcome to the forum..... vdub

[jlove]

A good doctor is definitely important, like everyone said. It does take some stress off, knowing you have a doctor you can really communicate with and one who knows what they're doing. It took me awhile (6 years) to finally be diagnosed so I was almost relieved when it finally came. Now, at least, you know what you have and you know what your options are. Like lag said above, the best thing you can do is be on top of your health and treatment and hope for the best. "Cautiously optimistic" is what I aim for and so far I've been pretty good with that. I try to minimize stress and take care of myself as best as I can so I don't put my body through more than it already has to. My diagnosis was a big change in my life but I have had a few positive things come from it so I try to focus on those things as much as I can. There's a lot of support and information on this forum so you're off to a good start!

[annekat]

Welcome, Brian. No, please don't get too caught up in what you read on the internet. Right here is pretty much the best source of info. There are some good sites such as Mayo and John's Hopkins, and the VF site, but even some of them are a bit out of date in places, regarding treatment meds and such. Here, many of us know a lot by virtue of reading about the many experiences and knowledge of other members, and get a feel for things over time. I have learned a lot more here than from any doctor or any other site on the web.

I agree with lag713 that once one is diagnosed, it is not standard procedure to wait to prescribe the immunosuppressant drug. Prednisone alone is not enough. And given the type of involvement you have, methotrexate seems to me to be the most usual choice, given what I've read here. There are stronger drugs, but they can be saved in case of more severe involvement, such as lung or kidney. A lot of people have done well on MTX. I don't know much about Cellcept, except that it doesn't seem to be commonly prescribed, especially as the initial drug, but even as a maintenance drug, that is, for when the disease has been brought pretty well under control by the initial treatment but needs continuing medication to stay that way. If someone can't tolerate MTX, or one of the others, they may be given an alternative.

Anyway, my intuition is also that a second opinion would be warranted, and perhaps you could get started sooner on your full treatment and minimize possible damage from stretching things out too long. Perhaps you could see one of the well known docs listed above, or others listed here: VF Medical Consultants Then if they are too far for frequent trips, maybe one of them could recommend a doc in your area, or your doc could consult with them, as they have made themselves available for that. Good luck! And don't get too scared, most of us do quite well for a long time with proper treatment. This may never have to affect your bringing up a family, having a career, and the other things we do in life.

[Alias]

I was put on prednisone as soon as the provisional diagnosis was made locally, based on the positive ANCA result, etc. After consulting with the rheumatologist I would be seeing in Seattle, my internist immediately ordered the chest CT and blood work to rule out lung and kidney involvement. If that has not been done in your case, I would be concerned and looking for explanation from your doc and/or another opinion. I ended up waiting two weeks to start immunosuppressant treatment, but the very day I saw the rheumatologist I was started on self administered injections of methotrexate and other meds. Six weeks does seem like a long wait, especially if the extent of disease in your case is still unknown.

[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.

[JeanMarie]

Welcome & sorry you are here but hope we can help!!
I'm in agreement with some of the other folks here--as soon as I saw only prednisone & not seeing your rheumy again for six weeks my hackles went up. There is a Vasculitis support group in upstate NY--listed on the foundation support site--vasculitisfoundation.org

[Miranda]

Welcome! And sorry you are having to join us. I think you will like it here. I have found so much helpful information and real true experiences. Don't look too much into the internet or it will drive you crazy and scare you even more. There are a lot of people on here who have been through it all and give lots of good advice. On the doctor thing, If I were you I would get a doctor you are comfortable with and know you can trust. Second opinions are good. I got my second opinion a few months ago after having it for 6 years and things started turning on me. Best decision I made so far. Best of luck to you!

[Allisonquast]

I

I agree that your doc should consult with those at the Vasculitis Foundation. It would be a mistake to wait 6 weeks to start taking medications to actually treat the disease given that many drugs take months to go into full effect. Prednisone makes you feel better by bringing down inflammation but it only treats the symptoms, not the disease. Given your symptoms, I think methotrexate would be most appropriate but that's something to discuss with your doctor. Cellcept has a higher relapse rate compared to methotrexate.

I would recommend that you get a CT scan to see if any damage has occurred in your lungs, urinalysis and blood work to check your kidneys, a hearing test to see if your hearing is intact, as well as an endoscopy of your sinuses, trachea, and upper lungs. I was just diagnosed in January and I've had the workup. Best thing to do at this point is establish a baseline and preserve the functioning you have by getting ahead of the disease - prevention is invaluable. Don't let the information on the internet scare you. Let this be an opportunity for you to take charge of your health and well-being. You can live a long and healthy life if you are proactive about treatment, checkups, treatments, etc. It is a chronic, lifelong illness so you will need to acknowledge that the disease can become active again at any time and you will want to be on top of it.

I know of Dr. Shapiro (rheumatologist) and Dr. Lebovics (ENT) in NYC but that would be a trek from Rochester. I make the trip from central Connecticut every 3 months to see Lebovics because of his expertise - he sees a lot of weggies every week whereas my local rheumatologist and pulmonologist have seen less than 5 each in their careers. Dr. Lebovics put me at ease because he is very knowledgable. Given your location, there may be docs in Canada that would be easier to access.

I recommend the resources collected as "stickies" in the General WG Chat forum. I'm sorry that you received this diagnosis and are floundering through the information online. You have support here. I know you must still be in shock. It took me a few weeks to really accept it as being real. It will take longer to come to terms with what it means. I still feel like I freak out whenever something goes wrong but I am learning to roll with the punches and accept what is out of my control.

Welcome to the forum, you will get such good support and information on this forum, this is great advice. When my husband was diagnosed we put blind faith in our doctors, with this disease that's not always the best approach. You have to be knowledgeable and advocate ( sometimes) quite fiercely for yourself! read, read, read and ask questions of your medical team. Read paragraph two above again - it's great succinct advice!