Hello

[Ruotsi1]

My name is Angela and I was diagnosed with Wegeners in June 2013. Not quite sure when symptoms started, though I have had chronic ear infections over the past 3 years. I had bronchitis/sinusitis in the beginning of June. I was admitted to the hospital mid-June with "bacterial pneumonia" and diagnosed within 2 weeks (confirmed by a lung biopsy.). I was started on 60mg Prednisone four days ago. I have another week before my initial appointment with the rheumatologist. My sinuses are mostly what I feel is being affected, nodules were found on my lungs, kidneys are fine. I am having pain in my elbows and knees currently.

All of this is new & scarey. I have enjoyed reading so many of your stories. I have so many questions, but continue to research. One of my questions is, when referring to a "Weg's specialist" are the doctors usually rheumatologist?? Thank you in advance.

[DJS]

In my wife's case, yes and because there is a relationship between vasculitis and the other classes such as lupus, and others which are tested for and treated in a similar manner. My wife was on 60 mg prednisone from May 6, 2012 until she tapered off around March 2013. All under the watchful eye of her rheumie via blood tests every two weeks.

[drz]

My name is Angela and I was diagnosed with Wegeners in June 2013. Not quite sure when symptoms started, though I have had chronic ear infections over the past 3 years. I had bronchitis/sinusitis in the beginning of June. I was admitted to the hospital mid-June with "bacterial pneumonia" and diagnosed within 2 weeks (confirmed by a lung biopsy.). I was started on 60mg Prednisone four days ago. I have another week before my initial appointment with the rheumatologist. My sinuses are mostly what I feel is being affected, nodules were found on my lungs, kidneys are fine. I am having pain in my elbows and knees currently.

All of this is new & scarey. I have enjoyed reading so many of your stories. I have so many questions, but continue to research. One of my questions is, when referring to a "Weg's specialist" are the doctors usually rheumatologist?? Thank you in advance.

No the Vasculitis specialists cover most specialties that might deal with Wegs. Since kidneys are often a big concern for us there are of course nephrologists as well as eye doctors, ENT, lungs, and right most are rheumatologists.

[mishb]

Hi Angela,

I see you have passed all of the tests and you have come through the final stage, which now gives you free entry to this wonderful forum :flapper:

Actually, I am so sorry that you have to be here but glad you found it.....this is the place to be, to help alleviate your fears.

As drz said, everyones stories are different and therefore different specialists are required to keep WG under control.
For me the rheumatologist is my go to guy, who then refers you on to the others that may be needed - ENT, Immunologist, nephrologist etc.

[Dirty Don]

Welcome, as it were, to the club Angela. Very classic case you seem to have going. WG specialist is more of a reference to those docs who have dealt with WG/AIs before and continue to keep up on the new info for AIs. I happen to utilize an ENT, Pulmonologist, & Rheumatologist at this time...they are all WG experienced, although the 2 prefer the rheumy to make final decisions. As for your continued joint pain, it should begin to subside as the pred reduces the inflammation...60mg should do it very shortly for you. Best of luck with your rheumy...he/she will become your next new best friend!

[Alysia]

Hi Angela.
welcome to the forum. this place is life saving. physically and psychologically.
I wish I would have find it when I was just dx. my WG also started with antibiotic-resistent "atypical pneumonia". first dx as BOOP.
also lung-docs can treat wg. in fact it was lung doc who first suggested diagnosis of wg. my doc today is rheumatologist.
your doc is better be with some experience but there are some more qualities needed:
available in phone or e-mail when needed
knows how to listen
thinking with you together about which treatment is best
have enough time and tolerance for you
humble enough to make consultation about you when needed (my doc was doing "case presentation" about me with couple of specialists although he is the manager of rheumatology)
better not go to the arrogant doc who consider himself more then God
good luck !

[Ruotsi1]

Thank you all for the responses. I am compiling a list of questions for my appointment with the Rheumatologist. This will be the first time I see her, but she comes highly recommended. I was diagnosed by a Pulmonologist in the hospital after a VATS/lung biopsy. I need to find a local ENT that knows about WG. My current ENT said he is willing to see me for my ear tubes, but does not manage Weg's...doesn't make sense to stick with him.

[drz]

Thank you all for the responses. I am compiling a list of questions for my appointment with the Rheumatologist. This will be the first time I see her, but she comes highly recommended. I was diagnosed by a Pulmonologist in the hospital after a VATS/lung biopsy. I need to find a local ENT that knows about WG. My current ENT said he is willing to see me for my ear tubes, but does not manage Weg's...doesn't make sense to stick with him.

Finding an ENT doctor that is experienced in managing Wegs sounds like a tough task. I am happy to find one that will just listen to advice and recommendations of my doctors who manage or advise on my Wegs and inform them on what he sees that might be Wegs related. My ENT doctors ( I use two of them) have done surgery to try improve my hearing, check for damage in nasal and sinus area caused by Wegs, help assess and manage infections in sinuses caused by Wegs and its RX, check for stenosis in throat, check hearing levels, and clean out mastoid cavity from earlier surgery. I don't expect them to try help manage my Wegs but am happy they are aware of it and how it might impact my ENT areas.

[renidrag]

You should take a parent or friend with you to all your appointments. Four ears remember much better than two.
Dale

[annekat]

Welcome, Angela. My ENT diagnosed my WG but told me he doesn't treat it. He can evaluate the damage to my sinuses, throat, and hearing mechanisms, and can do any procedures in those areas. I still see him occasionally to check things over and clean things out. But he doesn't prescribe my meds or evaluate my blood tests. It is possible there could be ENTs around who do have experience with Wegs. I would expect to find them in the well-known vasculitis treatment centers in various parts of the country, but there many of us who are not near such centers. Big cities would be more promising than small towns. But any ENT should at least know what Wegs is and be able to work with the other docs on your case. True, we usually think of rheumatologists as the main Wegs docs. But not all of us use them, though perhaps we should. Not all rheumatologists know much about Wegs and some of them mainly treat arthritis, or that's the feeling I get. My ENT is pretty savvy about the docs in my town and didn't seem to think there is a rheumy here who has much Wegs experience, if any. He is comfortable having me treated by the pulmonologist that he had referred me to earlier for asthma, although he, too, hasn't much WG experience. There is a university med center an hour or more away that might have someone more suitable, but I am doing pretty well with what I've got.

[Ruotsi1]

Thanks Annekat. I am located right outside of Tacoma, my rheumatologist and Pulmonologist are both located in Tacoma. I have tubes in my ears, so am hoping to find a local ENT, but willing to drive to UW if needed. My current ENT said he would continue to manage my ear tubes, but stated he won't manage my Weg's. I do have sinus issues, so would like to follow up regularly. Thanks again.

[annekat]

Thanks Annekat. I am located right outside of Tacoma, my rheumatologist and Pulmonologist are both located in Tacoma. I have tubes in my ears, so am hoping to find a local ENT, but willing to drive to UW if needed. My current ENT said he would continue to manage my ear tubes, but stated he won't manage my Weg's. I do have sinus issues, so would like to follow up regularly. Thanks again. Nice to know you are nearby. If you feel your rheumy is knowledgeable and experienced with Wegs, I would be interested in knowing his or her name. But I am a Medicare patient so don't know if just anyone would take me. I do think I'd like to see a rheumatologist some day to look over my case. But I'd want one with decent Wegs or vasculitis experience. I do know from word of mouth and research on the web that there is a rheumatology clinic at UW and that some of the docs there have done research on vasculitis and have experience with it. A fellow forum member has given me the name of one who he sees. I can share that by private message if you want, since that is how it was shared with me. My ENT also mentioned UW as the place I'd be most likely to find someone of that ilk. Good luck, and maybe our paths will cross some time. BTW, your case has a lot of similarities to mine.

[mr.g]

Hello. Are you north or south of Tacoma? I live in Federal Way. I was dx in the fall of 2010. I would buy the coffee if we three, myself, Annekat, and you could get together for a chat. My wife would be interested in how other are dealing with WG.

[HopeinTN]

Check out the following kink to prepare for your appointment and make planty of notes before hand.

Wegener's granulomatosis: Preparing for your appointment - MayoClinic.com (http://www.mayoclinic.com/health/wegeners-granulomatosis/DS00833/DSECTION=preparing-for-your-appointment)

[HopeinTN]

OMG! I just read what I posted.....it's not Kink, but a link. Oh my. I have too much on my mind to be posting. HA HA HA!

[AmyA]

Welcome to the group! Your story really sounded familiar to my own. Started with the lung nodules, which led to a 5 hour VATS surgery to drain an out of control infection, then while recovering had horrible joint pain in my ankles and elbows. After tons of lab work my rheumy (who I was seeing because they thought it was arthritis) dx me with WG in june 2011. I also have sinus issues but consider myself lucky because I don't have kidney involvement. My rheumy takes care of all my lab work and care. I do see a E.N.T. and a lung doc, but they pretty much let my rheumy make the final call. Look out for all the side effects with the Prednisone. I was totally unprepared! taking it too close to bedtime can keep you awake and the weight gain for me was unbearable...As I tapered off after a year and a half of taking it, the side effects and weight began to be easier to manage. The joint pain I experienced went away with 2 weeks of starting the steroid. I hope you find all the answers you need here, it's a great site to get real info, from real patients.