I posted here earlier this year re my symptoms of WG, or was it WG ?

I felt very unwell with sever lethargy, a raised ESR CRP, headache, crusty sore nose, nose bleeds, [ not heavy ] red sore eyes, outer ear ache, tinnitus, hoarseness, heavy hot legs, with pins and needles.

My GP thought it was a flare of my GCA, so told me to increase my steroids, and as I was due to see my Rheumatologist at Addenbrook's the following week [ 6 monthly check ] my GP said to tell him when I got there of my symptoms, he also sent a fax. as he could see how bad my nose was.

The Rheumy arranged for head scan, blood tests, [ ANCA ] eye test, ENT , who ordered a nose biopsy.

Fast forward 6 months.... I saw the Rheumatologist on Wed. who said all tests were negative so I don't have WG although he said there wasn't enough tissue taken of the nose to get a diagnosis, . probably because I was on a higher dose of Pred. which could have masked the results anyway, as with the ANCA test.

I have been reducing my steroid dose on the slow method and Rheumy told me to continue that way, so far so good [ I'm now at 10 mgs ]

All the WG symptoms have gone !!! so was it WG ? [ all the symptoms were there, ] and is it in remission ? I don't suppose I will know, unless I get all the symptoms back and maybe have to go through all the test again.

6 Replies

  • I guess that's good news in a way, isn't it? A negative result and no more symptoms. Frustrating maybe, given you had to go through all the symptoms (a could possibly again) and haven't had any conclusive results. When I had both biopsies taken from my nose, one before and one after diagnosis, they were both inconclusive and I was told that wasn't uncommon. I hope you are feeling much better, with less symptoms to stress over.

  • Yes it is good news and less for me to worry about, and thank you I do feel a lot better than I did. I have enough with the GCA/PMR and my kidney disease, sleep apnoea, and a few more health issues, so lets hope I don't get any of the WG symptoms back.

  • You do indeed have enough to contend with. I hope everything remains calm for you whilst you continue to reduce your treatment. Take care.

  • Uh Oh - what's this about kidney disease? And other health issues? can you send me a PM or email john.mills@vasculitis.org.uk. Prednisolone can suppress symptoms and distort test results.

  • That sounds exactly the same symptoms what I had and have and it was proven from biopsy that it is WG

  • Unfortunately they didn't take enough tissue from the biopsy on my nose.

    But as I said in my previous post my symptoms gradually went, [ which is good news ] probably because I went on a higher steroid dose. It's very strange as the symptoms were all very real and pointed towards WG, however some other vasculitis symptoms are similar, who knows ?

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