WG

[bowler]

I am due for a head MRI scan, and also waiting for ENT and eye appointment, re suspected WG, my ANCA came back negative I suspect due to the steroids I take ?

Whilst waiting for all these test my symptoms were getting worse so my Dr. has increased my Pred. from 20mgs to 25, [ 2 days ago ] and my symptoms are getting better, my eye's are not so blood shot and sore and not bulging so much, my headaches are better, although I still have some bleeding from the sinus's, and nasal crusting, I'm also hoarse.

My question is............. could the higher dose of Pred. scupper the results of the MRI, ENT, and eye test ? has anyone else had the same tests whilst taking Pred.?

I am so fed up with waiting for these test, and feel if they were done quicker before high doses of Pred are given a diagnosis would be got.

I was diagnosed 16 years ago with GCA and wondering if WG is secondary to the GCA, maybe I have both together?

[sarahxxxx]

I've had these tests and more on a high dose of pred - 100mg at one point but now tapered to 5mg through the last year and am on lots of other meds. I don't think the pred makes any difference to the tests but if they do they will take account of this when analysing the results anyway. Good luck - I think it depends how efficient your hospital is as I managed to get a lot of tests very quickly after a kidney biopsy diagnosed MPA and Lupus. I hope you don't have to wait too much longer x

[bowler in reply to sarahxxxx]

Thank you for your reply which was encouraging. I attend Addenbrooks, Rheumatology for my GCA and have been refered back to them for my tests and suspected WG. I will be glad to get a diagnosis, not that I want WG !!!!

[maisie5]

Hi Bowler - I too was diagnosed with GCA back in 2009. After relapsing 3 times I finally started to feel better about 18 months ago and actually managed to get off steroids for a whole 6 weeks!

I then developed completely new symptoms, ear ache and balance problems, loss of hearing (not complete), nasal crusting and bloody discharge, sinus blockages and headaches. My GP tells me that ?Wegeners? is on my notes from Addenbrookes so I asked if this is a new diagnosis when I saw my vasculitis consultant. She said that they are sticking with the GCA diagnosis for the time being as cross overs from GCA to Wegeners is extremely rare. I lost my hearing in one ear big time last week and Addy's put me back up to 30mgs pred reducing every 5 days 5mgs each time. I have read several medical research papers recently which confirm that although rare, crossovers to Wegeners do happen. Has anyone else suffered this crossover? Lets stay in touch bowler.

[bowler in reply to maisie5]

Hi Maisie5

What a coincidence, I was diagnosed 16 years ago at age 54 with GCA. [ negative biopsy ] I have never been off steroids in all that time, only managing to get down to 5mgs for a while. Like you I have been getting new symptoms, the headaches are different mostly on the top of my head, but also in the temporal region, so my Dr. thought is was another flare of GCA, however I am also getting bleeding from the sinus's, crusty sore nose, blocked ears, hoarse voice, the whites of my eyes are constantly red and sore with a feeling of pressure behind them, I also have pins/needles in my arms legs and feet, and I ache in my finger joints, arms, shoulders, legs, which I thought was PMR? but these aches/pains come and go even though I am on 25mgs Pred. The lethargy is awful, but a bit better now I'm on 25mgs. I just felt awful.

I have an App. at Addenbrook's on Mon. 23rd March for head scan, and now waiting for appointment's for ENT and eye clinic.

I am attending the Rheumatology clinic for my GCA so they are ordering the tests.

Sorry for the long post.

bowler

[bowler in reply to maisie5]

Hi maisie5

I have my head MRI scan on Mon, and an eye test on Wed, so 2 days visit at Addenbrooks next week, I now await an appointment for ENT so it looks like things are moving.

Did you have all these tests for suspected WG ?

You say you are reducing your Pred every 5 days at 5mgs. a time, that seems quite a lot to reduce so quickly.

[maisie5 in reply to bowler]

Hi bowler

I have to reduce really quickly because I have diabetes and preds send my blood sugars thro the roof. When I was first diagnosed and on 60mgs daily I could only reduce very slowly and was really ill.

I have had many tests and all but the ear tests have come back negative.

I have two hearing aids which help a lot. With ongoing headaches, ear problems and bloody nasal discharge, I am convinced I have recurring flares of vasculitis in my head, I just don't have a label for it but it is completely different to GCA. Good luck with your tests. Keep us informed,