wgp

[bowler]

I posted on here several times re symptoms of WGP, the ANCA test came back negative, so My GP decided to refer me to Addenbrook's which I assumed would be the Vaculitis clinic, but instead he refered me back to Rheumatology which I already attend for GCA. I had my appointment yesterday. Outcome, they want me to have a MRI scan on the head, and they will write to my GP so that he can refer me to ENT for the sinus bleeding, nasal crusting, so I assume another long wait [ the ANCA test took over 4 weeks to arrive back ] I don't understand why Rheumatology can't refer me to the ENT clinic at the same hospital, surely it would be quicker ?

I have been taking 20mgs of Pred. for 6 weeks, and my last blood test revealed that my ESR has dropped from 27 to 11 CRP 6 BUT I'm still having the symptoms.

I understand that WGP can be serious, YET there doesn't seem to be any urgency in getting tests/diagnosis done.

I posted this as several on the site wanted to know how I get/got on.

A question. does anyone with WGP have pressure behind the eyes with bulging ? this is a new symptom I'm having along with the red eye, the Rheumatologist also noticed this.

[jackrussell]

This is just a general reply to your question, It is your right to request a second opinion / or referal to a different hospital. sad to say in some cases Consultants seem to hesitate in doing this ,maybe it,s the attitude, " if I can,t cure this you haven,t got it ,or at least I,m going to try all avenues first ", meanwhile " we " suffer on, have you actually said the words " I would like a referal to a specialist Vasculitis clinic " to your Rhuemy, Your GP may feel it is your Rhuemy,s decision to refer you and doesn,t want to " tread on his toes " When I had trouble with my nose/sinuses my Rhuemy at first said he would get my GP to make my appointment, then decided he would refer me to ENT himself as it would be quicker. I do feel perhaps you need to do a bit of pushing, some of us find this difficult, I know there was a time when I did , but needs must !! It will become a circle going round and round so try standing your ground ,firm but polite, I wish you well and hope you can get some desisive action.

[bowler in reply to jackrussell]

As this was my first referal re my suspected WGP, and like I said I thought it would be with the Vasculitis clinic.

I suppose my Dr. took the quick way out as he knew I was due at Rheumatology re my GCA so he faxed them a letter prior to my appointment, which I didn't know till I got there. I suppose I will have to go along with them [ Rhematology ] at the moment as they are refering me for a scan, and writing to my Dr. re ENT. once the scan/ENT are over with I will take it from there if not satisfied, I'm not a pushy person, one of the old school who thinks the Dr. know's best !!!

[Doghouse]

Hi Bowler, in the past 12 months I have started haveing excoriating pain behind my eyes, it can be the left or the right eye. Nothing relieves the pain , it can last for a whole day . Also my forehead swells, sometimes in the middle or it can be either on the left or right side along with that I feel dizzy . I'm due to see my consultant at the end of the month.

[Haggiss]

"A question. does anyone with WGP have pressure behind the eyes with bulging ? this is a new symptom I'm having along with the red eye, the Rheumatologist also noticed this."

Yes to the question above. I was diagnosed in 2008, then had a flare up in May 2014, the major symptom I had was that my left eye was starting to bulge and the pressure behind it was painful. I knew there was something wrong as I had started to get the pain in the finger joints. I went had a blood test this showed it was Anca positive then I was told to go to the eye infirmary asap. They kept me in overnight so I could have a CT scan the next day.

The scan showed that it was the WG flaring up and causing my eye to bulge. I was put on Pred 40 mg asap. Also the scan picked up a blood clot in my internal jugular vein which was caused by the inflammation.

They kept me in hospital for 12 days as they thought I was going to loose my sight in the left eye, for the first 48 hours I had to have an eye test every hour!!!! The rest of the time in hospital was to get my INR levels correct to stop further clotting.

When I came out Rheumatology put me on Cyclo via IV for 6 months (10 sessions). As soon as I when on the Pred the inflammation on the eye reduced and I was pain free.

So in a nutshell my advice would be to go to an A & E eye infirmary if you haven't got one close by I would then go to hospital and get your eye sorted out. With my experience I think it would be an initial case of increasing your Preds.

Hope this helps.

Thanks

[bowler]

Thank you for your reply,

What a nightmare for you, glad to see that you had very good treatment.

My eyes feel more like there's pressure behind the eye rather than pain and very bloodshot, and to think that the Rheumatologist I saw on Wed. noticed this but didn't further it !! I also felt dizzy when I got off the chair to to leave.

I haven't been diagnosed with WGP yet, so seems like it's a wait a see with the Drs. what the tests reveal, although I do have all the symptoms. Sinus bleeding, crusting of the nose, headache, joint pains in the fingers, arms and shoulders, pins and needles in the arms and legs, my legs get very hot especially at night, and the lethargy is so bad.

I think I will up my steroid dose myself { I'm use to doing this for my GCA } I'm now wondering if I have 2 lots of Vasculitis going on together GCA AND WGP !!! If that's possible.?

My hospital is in Cambridge " Addenbrooks" and is a 40 mile round trip for me, but I will go if my eyes don't improve with the Pred. increase.

Thankfully we have this site to share our health issues.