Do I have WG ?

[bowler]

I have in the past year had a problem with my nose, which is very sore,dry and crusty, I also have bleeding which seems to be coming not only from the inside of the nose but higher up in the sinus's ? I wake every morning with a headache, and my mouth is so dry my tongue sticks to the roof of my mouth, the whites of my eyes are always bloodshot, and I have pins and needles in my feet and arms. I also have stage 3 kidney disease.

I should mention that I have GCA/PMR dignosed 15 years ago, and been on Prednisolone all that time, so could the Pred be masking something else ie WG ? as when I'm on a higher dose of Pred my symptoms seem better.

Is it the done thing to aproach my Dr. and say "I think I have WG" or should I just present him with the symptoms and take it from there.

Is it possible to have GCA and WG,?

[PMRpro]

i would say that if you are still having problems with GCA/PMR after 15 years it wouldn't be unreasonable to ask if you could be referred to a vasculitis expert. I have just read a paper when a patient presented with PMR but it progressed to another vasculitis, rather than GCA. Some symptoms are very similar and the deciding bit would be either a temporal artery biopsy which showed giant cells, or histology showing other inflammatory signs rather than giant cells.

Do you have a good relationship with your GP?

[bowler in reply to PMRpro]

When I was diagnosed 15 years ago the biopsy I had was negative, but I responded to the Pred, and over a year I manged to get to 5mgs. but never below that, and since then for 15 years it's been a roller coaster, up and down with the Pred doses.

Unfortunately since our Dr's retired [ man and wife team for 38years ] our surgery has been run by Locums, however since Nov. we now have 2 new permanent Drs. very young in their 30s. I wonder what their knowledge is about pmr/gca/vasculitis ? I will soon find out as I have just made an app. to see one of them but couldn't get an app. till 19th Jan.

I am due at the Rheumy clinic at Addenbrooks in early March, and was wondering

if they would refer me to the vasculitis clinic, ? [ if I don't get any joy from the GP ] I never did understand why GCA is treated by a rheumatologist anyway !!!

[PMRpro in reply to bowler]

Me neither - it's historical, GCA/PMR often presented as "rheumatics" so it went to them. In other countries it might be an eye specialist or neurologist who gets the GCA patient, both of whom tend to be more aggressive and less fearful of using pred.

Locums aren't always bad but it is a bit difficult to get referral stuff achieved. You may be lucky with your babies - if they trained in the northeast for example they have had lectures from GCA/PMR patients!

All the very best - I shall watch with bated breath.

[Nadine99]

My husband has the same symptoms (without the kidney bit) for nose, headaches, pins & needles etc. He has WG, so yes, go ask, & if your doctor doesn't know, then find someone who does. Lots of info on here about different areas & specialists. Just ask.

Good luck

[bowler in reply to Nadine99]

Thank you for your reply

I have made an appointment to see my Dr. on the 19th Jan.

[Suzym2u Moderator Vasculitis UK]

we do know of those with GCA and WG overlaps bowler. I suggest you ask for a referral to a multidisciplinary centre for treating Vasculitis, such as the Hammersmith or Addenbrookes. I am not sure whereabouts in the UK you live.

Best Wishes

Susan

[bowler in reply to Suzym2u]

Thank you for your reply.

Like I said in my post above to PMRpro I have made an appointment to see my Dr. for the 19th Jan. earliest I could get.

I attend Rheumatology at Addenbrooks for my GCA. my next app. there is in March, so if I don't have any joy from my GP I'm hoping the Rheumatologist will be able to refer me to the vasculitis clinic, I'm not sure if they can do that or wether I have to be referred by my GP ?

[Doghouse in reply to bowler]

You should not have to wait that long for an appointment to see a GP. You should be able to phone up and get one within 24 hours. They may say it's emergencies only, you should still request one ( if it was me and I was concerned I would and have requested one, you do not have too explain to the receptionist why you want to be seen. You could ask to speak to the GP by phone normally they will ring you back after surgery. A locum or permanent GP can and should do referrals, you just have to be firm , ring back the surgery in a couple of days to make sure it's gone. The longer you leave it more damage can be done.

[suffolkgirl]

As you're already going to Addenbrooke's you should ask for a referral to Dr. David Jayne's vasculitis clinic. His team are very good and will get you seen by an ENT consultant too ( probably Mr Jani).

[AndrewT]

Dear bowler,

I don't know if you have WG, or not, but please, please do take Susan's advice and see someone at Addenbrooke's Hospital. Dr David Jane, who is also an advisor to our sister organisation-Vasculitis UK- is the leading expert, in the country-if not the world actually. I am sure that, if you don't have WG, he, or his team, will make the right diagnosis-and therefore give you the right treatment/referrals. I have stayed under him, even when I could have changed to someone nearer where I live, quite deliberately.

Please do let us know how you get on please.

Happy New Year, on behalf of us all.

AndrewT

[bowler in reply to AndrewT]

I only put 2 and 2 together when I got on to the vasculitis site and thought I could have WG.

My problem is, I have been taking Prednisolone for 15 years for GCA and I'm convinced that the Pred could have been masking the symptoms of WG ? as I understand that Pred is the treatment for WG. I will ask to be refered to the vasculitis clinic, and like I have said before " I don't know why my GCA is treated at Rheumatology" after all GCA is a form of vasculitis.

Best wishes for 2015

bowler

[9682maria]

I have all those apart from kidney problems I've got WG I believe you can get more than one Vasculitis as I know of people in my group that have been diagnosed with another form of Vasculitis sounds like wedgies to me take care xx

[AndrewT]

Dear bowler,

I still stand by advice, about getting a referral to Addenbrooke's Hospital. Please don't take this the wrong way but the problem with 'adding two plus two', as you say that you have-and in this case I DO think that you are right-is that you can get 5,000!

Once again Happy New Year

AndrewT

[bowler in reply to AndrewT]

I do know what you mean, and I shouldn't be puting 2 and 2 together and diagnosing myself, that's the trouble with too much info these days. It's like the pins an needles I am having, I have read it could be my GCA, my low B12, my kidney disease or WG all of which have the same/similar symptoms. I will await and see what the GP says next Mon. and stop reading into it, if no joy with him I will talk to those in Rheumatolgy when I next go in March.

bowler

[9682maria]

Reading your first comments is exactly what I experienced back in 2002 bad crusting nose bleeds sever head ear teeth aches which I still get Tinittus holes in the ear drum saddle nose, I've got WG and yes you can more than one vasculitus at the same time I know people that have more than one vasculitus disease 😘 I have a good rheumatologist but no GP he retired and I struggle for appointments these days thank god I have at least one good doctor hope you have a good specialist or GP.

[bowler]

hi

I am still having tests re WG both ANCA tests negative. I had a nasal biopsy last week

[ 26th May ] so waiting for the results, I have a feeling that it could be negative as I am taking steroids which could mask the result, and probably they also masked the ANCA results.? Don't know what the outcome will be if all tests are negative as I am still having the symptoms of WG.