Please please please read and advise?

Thank you very much for reply Tumtum. Yes, when not on steroids I have general body aches and painful hips. I have had a high Rheumatoid factor for years. I have seen an allergist and been diagnosed with non allergic rhinitis, a pulmonologist diadnosed cryptic organizing pneumonia and recurrent bronchitis and most recently I saw David Jayne vasculitis specialist for possible Wegeners but he ruled this out. I had a positive ANCA but some further testing was negative. My red and white blood counts and everything else to do ith inflammation are high. Steroids have never completely helped and each time I reduce everything returns, this time I'm down to 30 mgs and the eyes are bad, I have green phlegm from nose and throat, blood and small crusts from nose, low grade fever, body aches, itchy cough and a hoarse voice. I lose my voice every year. I have always had dry skin and lips but am unsure if my mouth is dry. I do not sweat on my body but have terrible head and face sweating with flushing. I am so fustrated because no one seems to want to take ownership of me as it's complicated.

How awful for you - I'm really surprised somewhere down the line you haven't been diagnosed with RA if your rheumatoid factor has been consistently high but this diagnosis is usually made with clear synovial swelling in finger joints or feet. I'm surprised too that Dr Jayne didn't come up with something, even if not Wegners.

I'm not nearly as ill as you are but I do get nose bleeds and crusting, had years of severe rhinitis, have high inflammatory markers, GERD, and I did have two years of fairly Classic synovitis in my hands. I've tried but had allergic reactions to four DMARDs. I'm thinking of neuro Sjogrens because I have a very widespread small fibre neuropathy and dizziness/ disequilibrium. Most of my present problems are Gynae and gastro - rectal bleeding with much scarring in my nether regions and microscopic haematuria. I have often wondered about CREST/ Scleroderma for myself. Despite frequent spells of dry coughing and a bout of pneumonia last year (along with pancreatitis and sepsis from drug allergy and post op wound infection) my lungs aren't affected. I did have paired bands in my spinal fluid and have a frequently high ESR, PV, CRP and total protein. One rheumatologist even suggested malignancy in the form of multiple myeloma. There are so many diseases and so many overlaps but I think they should at least try you on a drug such as Mycophenolate perhaps?

But surely a good rheumatologist should be able to help you if you have positive autoabtibodies and nodules on your lungs. I do hope things resolve soon for you. I'm so sorry I can't help you more but I do understand how it feels to be passed about like the parcel no one wants to open. Have you read up about mast cell disorders I wonder?

Ps I also have Hashimoto's thyroid disease and have a friend with Addisons. I did get a lot of helpful advice from an endocrinologist I saw privately and wonder if you have explored endocrine diseases as possibilities too?

So sorry to hear you are suffering too. I agree and suspect I have over lapping conditions. I also have an under active thyroid and interstitual cyctitis which I've read is linked with Sjogrens. I was very keen to see David Jayne after hearing wonderful things but he hardly conversed with me , just his student. I have asked to see him again but not heard as of yet.