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

[WG mom]

Brian I sent you a PM, but don't think I sent it correctly. I am in Rochester this weekend for a wedding. My daughter's friend with whom I spoke last night has Lupus and sees a rhuematologist through U of Rochester Med Center ( who she says is fabulous). He does treat Wegeners as well as other AI diseases. His name is Dr.Richard Looney. I believe he is accepting new patients. I would seriously consider contacting him for a second opinion.

[bgifmo]

Hello WG mom,
Well, this is great news. I actually got an appointment with Dr. Looney last Friday for a second opinion, so this is very encouraging to hear.
The diagnosis was the same, but he did say that I had the "least bad" case of Wegener's he had seen. (Yay!?!?)
I felt comfortable with him and I'm switching my care to his practice.
Thanks for contacting me!

[WG mom]

I am so glad you were able to get an appointment with Dr. Looney. He comes highly recommended so that should be of some comfort. Not sure what he means by "least bad," but I know right now my daughter's is localized in her sinuses which I'm told is good for an early remission. She'll have her last rtx drip this week and I'm hoping she will soon experience some relief.
Best wishes to you, Brian. Please keep us all updated on your treatment progress. And keep checking in with all the great folks here on the forum. They have been a fantastic source of information for me and know they will be for you as well.
Keep moving forward...

[keegan55]

It depends on the severty of your gpa. Some are lucky and it is limited to one area. This group has been so helpful with so much info. I read but dont reply to much hate typing lol. I hope you have engaged a kidney dr and an ENT a good one that has had dealings with GPA.There has been so many advancements with GPA that we can expect longer lived etc.I hope your rhuemy is a specialist in GPA .If in lungs You also need pulmonary dr stay strong you eill do very well

[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

[Jayne 14]

Welcome to the gang
Best place for help is right here
I had a short wait for the specialist to prescribe MTX so initially started with pred : that's just how it was , being referred from 1 guy to the next : hold on in .
I think the waiting is tough
You just want to get going but you will
And any treatment we get takes a while to get working & all the support is here
Good luck
Big love to u & our whole gang from the U K 👍


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[Velma]

Hello from WV.. I am a week in on this support group and am very pleased to have found a home to vent, give and get support as well. I was diagnosed when I was 23 years old and have battled it for 20 years now. The main advice I would give you would be the following: #1 fight for yourself and quality care--ask questions and never let interns work on you .. you are not a guinea pig, #2 be prepared to interview doctors and ask them what they know about WG (you want some one who is willing to work with a team as this disease usually effects ears and lungs and/or kidneys.. you need a good team).. anybody can look to see what is generally done for us with this disease.. you want someone with experience dealing with it and who will fight to help you. #3 be prepared for flares.. it will come and go into remission.. don't think any one medication is a cure all.. reality is you may go years just fine and then night sweats start or a cough begins.. medications may have to be changed or adjusted.. this is "normal" #4.. follow your instincts. You will begin to become your own doctor and keeping a journal or calendar to write down dosages of meds and symptoms will help you better help your doctors and the details will help more than you think. #5 communicate with your wife and doctors and family about how you are feeling. Prednisone may make you snappy (especially higher doses).. look up meds they want you to take and know the side effects. But most of all.. know that we are here for you and your family. The medications have come a long way in 20 years and I am still doing good. I have ups and downs as we all do.. but I am still alive. You will be okay. It will be hard at times.. but you will be okay. Prayers for you and your family.. and if you have any questions please feel free to ask. Someone here has surely experienced what you are feeling and going through. Good luck and keep us posted.

[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!

[BookNut]

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.

I am sorry it has taken so long to get back to you. I have been away....trying to find answers at the Cleveland clinic. Still do not have a firm diagnosis. I am not impressed with my treatment here. Too long a story to,get into. Dr. Bingemann keeps referring to my condition as my "asthma-like" illness. The doctor I am going to here does not really seem to care what happens to me. The test he lined up for me required me to go off my meds. I ended ip with an epic asthma attack that landed me in the hospital before I could even take the test. You would have thought this would have motovated him to see that I got prompt treatment. Not so. -10 days later I am still having to call every day to get him to call me back. Supposedly the new test....a methacholine challenge test....will be rescheduled very soon. I am feeling much better because of large doses of prednisone, so I should be able to tolerate the test this time. He also told me today that he thinks Ishould go to the Asthma Center. Passing me off I guess...bit It actually looks good. If only he had suggested it at the beginning I might have avoided a lot of grief. Anyway, I plan to see what results from the test, and then I am going to give it all up and go back to my other doctors. Maybe go to the Asthma Center in the future. I. am just really tired of being short of breath almost all the time. It has certainly messed with my quality of life. Up till three hears ago, I had no breathing problems at all. Frustrating.

[Velma]

Do you think the care is better at Cleveland? I live in WV and have exhausted all the docs here and went to Pittsburgh but they have me in a bigger mess so now looking at Cleveland. What is your opinion?