I have been told Wegeners has been mis diagnosed but the fear is here.
My nose has gotten elastic feeling at the tip and sides of nares. The inside of my nose also feels spongy.
This morning my right eye hurts and I got a one Kleenex worth of bloody nose.
I already have Giant Cell Arteritis and Polymyalgia Rhuematica and been taking prednisone for two years. At one point I was down to 7 mgs from 50 mgs but flailed and ended back up at 20. Now tapering slowly am at 15mgs.
I don't know what to do as on some of my charts it says I have Wegeners and so it is confusing at best. I am 66 yrs old.
You need to ask the direct question of your Consultants, do I have Wegners ( now known as GPA ) or not. If you do then you need more than prednisolone to treat it, Cyclophosamide or Rituximab is required to put it in remission. Whilst it's possible to have a GPA / large vessel crossover it's more likely that only one type of Vasculitis is responsible for your symptoms.
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That would be wonderful if it can't crossover. Maybe the bloody nose is part of Giant Cell Arteritis?.... I truly don't think I could take one more thing.
I see my GP on Tuesday.
The nose bleed felt as if it was running from up inside my head rather than my nose. It was a pretty good drip for about a minute than it stopped as fast as it started.
I do not turn on heat in my apt in fact I have doors and windows open all hours of the day so my nose is not dried out.
I really find it challenging when you are asked questions like " so how long have you had GPA? I looked dumb and say I did not know I had it. But then you read up on it a bit get your wits scared to death and pray your nose never starts to bleed.
So I am most likely over reacting and sure hope I am.
Thanks for the info I think I will pop back to my regular forum.
God bless
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I am not sure you understood, GPA and large vessel Vasculitis ( GCA ) can crossover but it's rare.
There must be a reason why someone has written in your notes that you have GPA ( Granulomatosis with Polyangiitis ) unless it's a typo and they meant GCA! Usually GPA affecting the nose causes ongoing symptoms mainly bloody and pus filled nasal discharge, nasal crusting, pain, sinusitis etc.
It's the kind of question you really need to ask your Consultant, GP's don't have the knowledge or experience to diagnose and manage Vasculitis.
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I was never told I had GPA but it was written as a diagnosis on two separate forms and by two different doctors as Wegeners Granulmytosis.
I am having a second nose bleed right now. It is just enough to mess up one Kleenex and it stops quickly.
Like I said I read a while back about nosebleeds so just have gotten worried about nothing.
If the bleeding would not stop I would call someone.
I have no pain except for my right eye area between my nose and eye it is a dull ache.
If you have pain in your right eye area and between your nose and eyes you really should have this investigated by a doctor who has experience of both GCA and GPA. GPA can affect the eyes and nose and has the potential to be very serious.
Thank you I will. Just saw my eye physician who said my optic nerves both look great and he did numerous tests. The pressure in my right is is elevated slightly so he is going to keep following up on it.
I see my regular doctor on Tuesday and we will go over all of this. I really think I hit the panic button too quickly.
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