WG: I posted here earlier this year re my... - Vasculitis UK

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WG

bowler profile image
6 Replies

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.

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bowler
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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.

bowler profile image
bowler in reply to

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.

in reply tobowler

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

John_Mills profile image
John_MillsVolunteer

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.

emmashley profile image
emmashley

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

bowler profile image
bowler

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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