I have been posting on here recently re suspected WG. I had a head scan last week, and also saw an eye specialist, now awaiting ENT appointment. The eye Dr. requested some more blood tests which I had before leaving.

My next app, at Addenbrook's Rheumatology isn't until 6 months time, and I can only assume that if there was anything wrong with the head scan they would contact me before then ? In the meantime I am taking Pred. for the symptoms, I'm also now experiencing bad stomach cramps, could this be another symptom of WG? All this waiting is getting me down.

4 Replies

  • Are you just taking pred Bowler? have they given you any other medications such as omeprazole for stomach protection?

  • I was already taking Pred. for what what was thought a flare of my GCA [diagnosed 16 years ago ] until these new symptoms of WG started about 6 months ago. I take blood pressure tablets, and Calcichew, but no omeprazole.

    I am at the moment on 25mgs Pred. and since being on this dose my ESR is 17 [was 27 ] and CRP 6 however my inflammatory markers have never been really high, my ESR was only 36 when diagnosed with GCA

    My ANCA was negative last month [ another ANCA and other blood test requested by eye Dr. last week ]

    I assume the Rheumalogist will now await the outcome of ENT and a sinus biopsy, WHEN I get an appointment !!!

    I obviously don't want WG but all symptoms point in that direction, which are headaches so that was confusing the Dr. and me due to my GCA. aches joint pains that come and go, sinus bleeding, [ not heavy] sore crusty nostrils, earache, constant red eye with bulging, tingling/pins and needles in arms, feet, and the lethargy is really bad, nothing like I have experienced before.

  • We do know of others who had been diagnosed with GCA and later developed WG - 6 months seems to be a long time to wait ... not all patients diagnosed with WG are ANCA positive, if you want to talk to John, who does have WG this is the number to ring he may help with some advice and maybe a plan to go forward.. Helpline Telephone:

    0300 365 0075 or alternatively you can email him

    best wishes


  • I suppose it is at least something that you are being properly investigated for WG but I agree six months seems a very long time to wait from where you are sitting. Would your GP be able to access the test results and help to fast track things for you perhaps?

    I share some of your symptoms and have a diagnosis of RA plus Hashmito's. I have a page long bullet point symptom list which keeps changing weekly but the symptoms are basically the same - only different ones take the fore or fluctuate, return with a vengeance, progress or fade into the background for a while. I've just had flu/ pneumonia and the nose bleeds and crusting have stopped for a few weeks while neuropathy and vestibular issues have increased. I have no sense of taste or smell anymore.

    I tried to flag this up to my rheumy by emailing him my list before my apt two weeks ago but I'm not convinced he had even read it. Even if he had he doesn't really want to know - is happier seeing it as a multi system form of RA.

    And perhaps it is after all but I don't want to learn that left untreated and unrecognised it has progressed and has affected my hearing and damaged my nose and jaw irreversibly while they focus all their concern on whether or not my RA is still active. I don't even know when my rheumy will next see me again - it was nine months last time.

    Fortunately I have a good and committed GP so plan to tell him about my WG research next week and hope he doesn't tell me I'm barking up the wrong tree. John has helped me a lot with information and advice so I'm well prepared now. I am about to start Azathioprine next week once my chest infection has cleared and my white blood cells are okay. But this is for my RA so presumably they won't be interested in monitoring whether it is working for my WG symptoms or not. I have tried three courses of steroids over the past four years. They are effective for me but unfortunately steroids make me bipolar at higher doses so my GPs are very wary of letting me have them now.

    Good luck to both of us in getting diagnosed and treated. You aren't alone with this quest.

    Ps I've had many autoantibodies tested (equivocal) but as far as I know this has not included an ANCA

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