New to the group

[Vansyckle73]

Was diagnosed at the end of August with Wegener's affecting my eyes, nose, lungs, and skin. Was sick for nearly a year and unfortunately went through 3 surgeries and one hospital stay before being diagnosed.

Have learned a great deal so far through all the posts of my Weggie friends as well as exhausted the searches on the John Hopkins, Rush University, and Cleveland sites. I am far from an expert but I sure have built a foundation of knowledge.

Keep on fighting! We will find a cure. Hopefully we put this disease in its dormant place and we can get back to living healthy and active lives.




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[me2]

Welcome. What kind of treatment are you on now? Has it been helping you?

[Vansyckle73]

I am on cyclophosphamide and prednisone under the direction of my pulmonary doctor. Next week I am meeting with a rheumatologist to start that relationship.

I am considerably better but far from the end of this journey. I use SinuPulse machine to assist with my sinuses, looking into ear tubes to drain the fluid and ring my hearing back, and I am trying to figure out how to breathe better. I lose my breath very easily.

I have noticed bursts of energy more often. Unfortunately they don't last long and I tend to take it too far. I am still learning to manage this.


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[me2]

It sounds like you are on the right track. The rheumatologist is the one to properly manage your wg treatment. I've had my hearing plugged up before and gotten it all back. I hope the same for you. There is also a great chance your breathing will improve quite a bit.
Have you done an introduction in the 'introduction' section here? It would be great to learn more about you if you feel up to it.

[Vansyckle73]

Why is the rheumatologist the right one to manage it? Do they do something specifically different than a pulmonary doctor would? Just curious.



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[me2]

My primary doc of 40 years ago told me that rheumatologist's are the ones to treat wegener's pretty much by default. Whatever the reason, they are the ones that see the most wegener patients and are given charge of their care.
Typically the rheumatologist guides the overall care of wegener's and sends you to specialties as needed. Many people started the journey with an ENT (myself included) because of the high incidence of airway involvement- especially sinuses. Your pulmy sounds like a good one to get you on proper treatment right away and then have the rheumatologist to oversee things.

[Vansyckle73]

I will keep that in mind. My current doc is doing that and so far so good. Very pleased so far by the progress.


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[Titus3:2]

Hi Vansyckle73,I am very sorry that you have this disease, but this is a great place to be if you do.Clearwater,Fl is my old stomping ground. I spent a lot of time at Morton plant many years ago because of this disease.Finally, diagnosed in Gainesville. Pulmonary handled my GPA from my diagnosis in 1988,until it showed up in my cheek,and jaw in 2005.At that point Rheumatology took over the case,and they have been in charge ever since.If it was not for this disease I would still be living in Clearwater. Hope ,you get to feeling better,Keith.

[Vansyckle73]

It ended up in your cheek and jaw? What were those symptoms like?

I hope to remain in the area but I do need to get better. No plan to leave yet, but hopefully we can still make progress and fight this disease.


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[Titus3:2]

The cheek,and jaw involvement was more of a huge inconvenience,than anything else.A mass in my cheek was discovered,and a CT scan showed activity in my jaw.Three different biopsies were performed,before the diagnosis of GPA was made in that area.It can still be visualized on CT,but no real damage done.Everyone here will tell you it can be a very slow journey,but things will really improve.Your breathing will get better.It will surprise you how things will improve,and be almost normal again.I hated it when Rheumatology was added to the list of docs.Give it some time.If you do want someone else's opinion,the Mayo Clinic in Jacksonville is pretty good.It was hard for me to pull up stakes,and leave Clearwater many years ago.I am not suggesting you do that.Hang in there.Other members can give you some good advice.You can always vent your frustration here.Keith

[Gab122]

Welcome to the family Vansyckle73
I was dx on 8/1/16 in Boston after I had 3 months of ear pain, pressure and (once tubes put in) drainage. Nothing could improve my ears so they finally ran inflammation marker labs, then ANCA labs, then CT scan and then lung biopsy. All positive/Weg GPA. I have been on pred and rituximab. Much improved til they started tapering pred. Ear pain has returned and pred brought back up to 30. Only 2 days now, but no improvement. So I'm thinking maybe I have an ear infection instead.
Like others mentioned, autoimmune disorders like ours fall under the care of a rheumatologist generally. Tho some see nephrologist to coordinate treatment too. I think it's because a specialist, like a pulmonologist, just focus on one body part generally. While the rheumatologist is trained to treat the vasculitis systemically and seek input from specialists. They take all that info and take the lead in the patient's care. I'd think rheumy docs see more Weg GPA patients too and probably are more up-to-date on latest treatments etc. I addition to the pred and ritux I'm on Prilosec to Proctect my stomach, fosomax to protect my bones and bactrim to help fight lung infections. Pred can be rough on stomachs and bones. I'm also told to take calcium w/ vit D. And prescribed ambien to help me sleep.
Hoping this info helps.
Wishing you the best as we both are starting our Weg fight together.

[annekat]

Why is the rheumatologist the right one to manage it? Do they do something specifically different than a pulmonary doctor would? Just curious.



Sent from my iPhone using Tapatalk Pro I think it is because rheumatologists handle autoimmune conditions, which is what WG is. So we have a rheumatologist oversee the disease, who is more familiar with the immune system than say, a pulmonologist, and then we have the pulmy, ENT, ophthalmologist, etc., as part of the team to monitor the areas that are their specialties. Trouble is, not all rheumies know that much about WG, since it is rare, and many of them mainly treat arthritis and other more common autoimmune diseases. So you need to find one with a fair amount of experience in WG and other autoimmune vasculitis, and preferably, one who is known for this specialty. University teaching hospitals are one place these rheumies might be found, or you can check the Vasculitis Foundation website for lists of specialists.

I have a confession to make. I am still seeing the pulmonologist who started my treatment 5 1/2 years ago. I was started on the same meds as you and eventually switched to methotrexate as the immunosuppressant. This is pretty standard treatment for someone with sinus, ear, and lung involvement. So even though I'm doing pretty well, and might even be in a medication-maintained remission, I would like to have a rheumatologist with WG experience, for a better overview, more familiarity with the meds, and a better idea of where to go from here, which drugs to taper off of first, and how fast, stuff like that. I have heard of one in my community with at least some WG experience but have procrastinated trying to hook up with him. Your post might help to prod me in that direction.

Anyway, welcome to the forum! Everything I know about WG I have learned here, and I've made many friends along the way. :smile1:

[Gab122]

I am on cyclophosphamide and prednisone under the direction of my pulmonary doctor. Next week I am meeting with a rheumatologist to start that relationship.

I am considerably better but far from the end of this journey. I use SinuPulse machine to assist with my sinuses, looking into ear tubes to drain the fluid and ring my hearing back, and I am trying to figure out how to breathe better. I lose my breath very easily.

I have noticed bursts of energy more often. Unfortunately they don't last long and I tend to take it too far. I am still learning to manage this.


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Just a thought... As for the sinupulse... is it sterile? It really important to only put sterile or distilled water/saline solution in your sinuses since you are immune suppressed.
I use a neilmed sinus bottle, saline packets and distilled water. The bottle itself can be sterilized in the microwave.

[Vansyckle73]

I clean it after every use and do a special cleaning every week and I do use distilled water with neilmed packets. The ENT saw a huge improvement in my sinuses since the machine.


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[ThePowerCouple]

[QUOTE=Vansyckle73;109333]Why is the rheumatologist the right one to manage it? Do they do something specifically different than a pulmonary doctor would? Just curious.

http://health.usf.edu/layouts/images/usf-wordmark.png

Division of Rheumatology

Dr. Yih Chang Lin
13330 USF Laurel Dr 6th Floor
Tampa FL 33612

Phone: (813) 974-2201
Fax: (813) 974-5229

This is the doctor that my husband sees. He's wonderful. We highly recommend him for your GPA treatment. We met him at the Vasculitis Foundation's symposium on June 2015. When you have a moment, please check out the Vasculitis Foundation's website: Vasculitis Foundation (http://www.vasculitisfoundation.org).