First post

[shawn]

I have been viewing the forum for a long time but this is my first post. First off, compared to everybody here I am fairly healthy and I am very thankful for that. I was first diagnosed in 2014 when I developed epischleritis. After 9 months 8 doctors 4 who were opthalmogists, 1 rheumatologist and 1 cardiologist, the last opthalmogist I saw tested me for C-ANCA which was positive. This was in 2014. I believe I had been sick for a quite a while as months before I developed eye symptoms I remember standing in more horse pasture thinking. I am too young to feel this tired. I had no energy or stamina. I saw the first rheumatologist prior to the C-ANCA test, since I was born with heart valve defect the first rheumatologist attributed all my symptoms to that. The cardiologist then cleared me and said I was just deconditioned and needed to exercise more. I was then referred back to rheumatology who dismissed all my symptoms except for the schleritis. And only said, I had C-ANCA associated vasculitis. At that time I also had pain in feet and hands and poor exercise capacity. He put me on Methotrexate for 6 mos. I ended up in hospital with pneumonia though afterwards the rheumatologist indicated it might have been a flare and sent the insurance company the code of necrotizing respiratory granulomatosis. After this hospitalization he finally recommended Rituxan and said that he would have to call what I have Wegners for the medication to get covered. My first treatment helped but I still had flare as I had not been given the proper dose. The second treatment I felt much better. I was exercising and my energy and exercise cacity has improved greatly.

My frustration is knowing what new symptoms are related. In the midst of long work up I was also with hearin loss and now wear a hearing aid. The ENT was adamant that it was not related to Wegners. At one point the rheumatologist documented that my foot pain and tingling was anxiety!!! I don't look at the notes any longer. My most recent symptom is in my ear again. I saw nurse practitioner in my PCM office who admitted she knew nothing about Wegners but was certain that the ear symptoms were not related. I am a social worker and have with chronically I'll patients for many many years. BUT it doesn't help. Sometimes I feel like the providers think I am crazy!!!

Sorry for the long post. I guess I am just frustrated today.

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[drz]

Have you seen a doctor who has great experience with Wegs and is a recognized expert in this field? They can best assess you and guide as you evaluate symptoms and relationship to Wegs.

[shawn]

Yes. I should have added that I am fortunate to live in an area with a good rheumatology department. And my current rheumatologist is one of the experts in wegners.

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[Middle of no where]

Check out book by Sarah Ballentyne
The Paleo Approch
Reverse Autoimmune disease and heal the body.
i atribute my current health to this book

[Alysia]

Check out book by Sarah Ballentyne
The Paleo Approch
Reverse Autoimmune disease and heal the body.
i atribute my current health to this book

I doubt it. Sorry.

[Lucky]

Check out book by Sarah Ballentyne
The Paleo Approch
Reverse Autoimmune disease and heal the body.
i atribute my current health to this book

@Middle of no where Have sent you a PM. (I think)

Lucky

[Debbie C]

Hi Shawn, sorry you had to join our "sick" but great family but glad you decided too. One of my first symtoms was an ear infection. My pcp kept putting me on different antibiotics and told me I have anxiety. Well I ended up in the hosp for 5 days with c-diff. And everywhere I go all I hear is that it is my anxiety, I personally believe that is all they can come up with since most drs. have no clue what wg is. I went to the er once with purple dots all over my legs and they told me I had poison ivy. I told them to google wg and you will see a pic of the same thing. I admit I have anxiety in fact due to all the ignorant drs. in my area. But back to you....I believe you need to be on prednisone ( although I also am not a medical dr.!!!! ) but I believe all of us are or at some point were.It is a necessary evil drug but as of the last 4 years that is the only thing I have been on. Also if you have been reading this forum for awhile. you should know about the Vasculitis foundation website. There you should be able to find an expert in the field and if you can not go to them , they should be willing to consult with your dr. Good luck in getting the proper care you need and you are not going crazy, This disease can pop up anywhere at anytime.One more thing since some mentioned the paleo diet...eating more healthy and excerise when you can will make you feel better since your gut has a lot to do with different things but as far as I know there is NO cure for this disease

[Gab122]

Hi Shawn, I'm glad you are doing fairly well but sorry you got such a run around from your doctors! Does your current experienced rheumatologist make you feel like you are crazy too or are you finally being treated for this disease appropriately?
I hope you are!

How are you being treated? I was started on prednisone 60 mg and ritux infusions. I'm now tapered to 25 mg pred and am doing fairly well tho I still have strange ear sensations and breathing issues. I am 3 months into the dx and coming to grips with it all after the initial rush of treatment is challenging as I feel some slight depression and anxiety.

[shawn]

Hi Shawn, I'm glad you are doing fairly well but sorry you got such a run around from your doctors! Does your current experienced rheumatologist make you feel like you are crazy too or are you finally being treated for this disease appropriately?
I hope you are!

How are you being treated? I was started on prednisone 60 mg and ritux infusions. I'm now tapered to 25 mg pred and am doing fairly well tho I still have strange ear sensations and breathing issues. I am 3 months into the dx and coming to grips with it all after the initial rush of treatment is challenging as I feel some slight depression and anxiety.

I have been having rituxan infusion every 6-9 months. No systemic steroid just steroid eye drops when I have flare which is every 2-3 months on rituxan. Prior to rituxan I was only able to get off the drops for 2 to 3 wks at a time.

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[Alysia]

Welcome to the forum Shawn. Ears symptoms are sure wg related. When was your last rtx ? How much pred are you on ? Are you still on mtx ?
Listen to your body and trust yourself. Dont let them tell you that its "anxiety" etc. I was accused for years of being hypochondriac, having "psycho somatic symptoms" etc. As a psychologist I even believed it. Untill wg almost killed me.