Any suggestions please,

[stuc]

I was diagnosed with Wegeners Ganulomatosis last year and ended up in intensive care for several weeks, my lungs and kidneys were the main areas affected. The symptoms i had prior to taking unwell is, repeated cold and chest infections, ear and nose pain and loss of hearing in 1 ear and joint pain. I am suffering many of the same symptoms again, my anca and blood have all come back fine as has chest xray. My consultant has advised I may have anca positive in my nose but need an ENT referral for biopsy to confirm if this is the case and will be at least a month before this happens, the doc has given me a stereod nasal spray and naseptin nasal cream which have not helped, i have tried a strong decongestioned recommended by a pharmasist which has not helped, i steam my face 6 times a day with albus oil which helps for about 10 minutes, any ideas of what will help, my nose gets really itchy turning painful on the bridge of my nose, my eyes stream and sting, I have a constant sore head and pain in my ear. My Prednisolone has been increased from 5mg daily to 30mg

[Hidden]

Hi Stuc,

You don’t say what treatment you were given to induce remission when diagnosed at first ( usually Cyclophosamide or Rituximab ) and what other medications you are on apart from Prednisolone.

Most patients relapse with the symptoms that they had when unwell at first, if these symptoms are familiar to you then that needs to be taken seriously.

You can flare with normal blood and a negative ANCA, nasal biopsies are well known for giving false negative results, from memory only around 30 to 40% of them are positive in ANCA associated Vasculitis. ENT Dr’s generally aren’t very knowledgable about Vasculitis apart from the ones that practice in the larger centres as part of a multi disciplinary Vasculitis team.

Does your Consultant have experience in diagnosing and treating Vasculitis? The fact that your Prednisolone has been increased makes me think that they suspect you have active disease otherwise why increase the Prednisolone?

What I am hearing from your post is that you are worried and maybe don’t feel that your Consultant is taking your concerns seriously. It’s probably worthwhile giving our helpline a phone if you would like to talk things over, the no. is 0300 365 0075. My e mail address is [e-mail] if I can be of assistance.

Best wishes

Lynn

[stuc in reply to Hidden]

Thanks for your comments and feedback Lynn, I really appreciate it.

[Essex-jill]

Hi Stuc

I was diagnosed over 19 years ago with WG. It has mainly affected my nose. I have saddle nose deformity,and a large hole in the septum. My WG was confirmed after a nasal biopsy as my ANCA was and always has been negative.

I used naseptin and steroid nasal spray but found it made my nose very dry and uncomfortable and was advised to try just Vaseline which I have found to help.

I still use neilmed sterile nasal wash three times a day and this helps too.

I wish you lots of luck and hope you get treatment soon

Jill

[stuc in reply to Essex-jill]

Thanks for your comments and feedback Jill,I really appreciate it.

[macrstq]

I also have GPA. Lungs and sinus probs. I was given cyclophosphamide infusions which sorted the lungs and the blood but not the sinuses. As the blood tests were ANCA negative my consultant at the time would not believe that there was a problem. I had nosebleeds, crustng, horrible pains in face headaches. Eventually booked a private appt with ENT specialist who, within 2 mins diagnosed Wegeners in the nose and said he would operate, clear the sinuses and take a biopsy. The operation was a huge relief. The biopsy was positive, the consultant apologised, and I was then given a course of cyclophosphamide tablets which finally sorted the thing. Then I went on methotrexate and steroids. I was recommended to use Sterimar twice daily to keep nose clean and clear. It is very good. Hope this is of use to you.

[stuc in reply to macrstq]

Thanks for your comments and feedback Macrstq, I really appreciate it.