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    Unhappy hello everyone

    I would appreciate anyone's view, as from yesterday morning i had never heard of wegener's. I am under the care of a rhuematoligist and whom i saw last week, he said i have an autoimune desease, said it wasen't lupus because of neg DNA. I have low tier ANA and a slightly positive ANCA with a raised pr3 antibody of 31 the letter went on to say but she has no evidence of wegener's. He ask me if i had any problems with my sinuses, i said no at the time but on thinking i forget to tell him that for the three weeks i have had non stop of continually blowing my nose and my nose appears to be blocked on one side. I also have a raised esr and crp and a positive RF also a high c4 and raised globulins . MY other syptoms are fatiuge and jiont pains and mouth ulcers skin lesions nad facial rash. I am on prednisolone and plaqenil at the moment, i would be grateful for anyones advice.

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    Hi Eileen,
    I'm glad you found our group. You have a number of symptoms that could indicate Wegener's, along with (+) ANCA and elevated pr3, ESR and CRP. (Elevated ESR and CRP can occur with many conditions, though.) Every one of your symptoms can certainly occur with Wegs. The fact that your doc wrote "no evidence of Wegener's" indicates he doesn't know the disease well.

    Where are you located? I suggest you find a rheumy who specializes in Wegs asap for a thorough evaluation and proper diagnosis. Wegs is quite rare and extremely difficult to treat. Highly variable presentation from patient to patient. Regular rheumys are not skilled in treating it and often are unable to even diagnose it properly. If it's not Wegs, the Wegs doc will help you figure out what it is.

    If we know your general location we can help you find a proper Wegs doc.
    Last edited by Sangye; 03-05-2010 at 04:56 AM.

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    Welcome Eileen,
    I can only agree with every word of Sangye's post. Wegener's is hard to prove without a positive result from a biopsy (and some Wegener's patients even have -ve biopsy results!), but you need to press for all the investigative work to be done by someone who is experienced in the disease. A delay to diagnosis and correct treatment can cause you all sorts of serious long term problems. Even a high probability of having the disease probably justifies starting treatment.
    If your nose is blocked by crusting of the discharge I would add that to the list of Wegener's symptoms that you are experiencing.

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    Thank you for your reply, i'm living in the UK. my rhuematolagist didn't mention wegeners to me, he done achest Xray, which was clear and said my kidney function was okay i did tell him i had a trace of blood in my urine which the observed. He then sent me a copy of the letter he sends to my GP and this is what he said"Her ANCA again was slightly positve with a raised PR3 antibody of 31 but she has no evidence of wegener's, however i am repeating her ANCA. Don't no if this makes any sense to you, he also said i had no evidence of sinusitis because when he asked i didn't connect it to the problem i was having with my nose, hope this makes sense.

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    Hi Jack
    Tanks for your reply, i don't know if i replied before but here goes, my rhuematoligist didn't mention wegeners to my face he asked if i had any sinus problems which i didn't relate to what was going on ie the continuing blowing of my and when i blowed my nose the other day it contained hardened blood. He done a chest Xray which was clear he said but then asked if i smoked i said no then he said have i ever smoked again no now i wondering why he asked if the XRAY was clear. I then mentioned i had atrace of blood in my urine but he said my kidney's were okay i suppose he meant my u's and e's. That was last week this week i received a copy of his letter in which he mentions wegener's but then went on to sayi had no evidence of it. I'm now worried that i didn't mention my nose problem, as i don't go back till June, what i am asking is do you think i should go to my GP and tell him about this i don't want make a fuss, but on the other hand it is woryring me now. mY rhuematoligist should not put these things in a letter knowing i don't go back to see him for quite a while it dosen't give you a chance to ask any questions, i would be vert gratful for your advice. Thanks Eileen

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    Eileen, please call your rheumy and tell him about your sinus symptoms, etc.... I'd also ask him about his comments regarding your x-ray and smoking history.

    The letter is a routine way of communicating between doctors. After each visit, they send your other docs a copy of the visit notes with their assessment and recommendations. It's very important that you call your rheumy as soon as you can. Wegs is sneaky and lots of damage can be happening before you feel really bad.

    I also recommend getting a copy of the radiology report for the x-ray. It will mention any irregularities.

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    Hi Sangye
    Thanks for your reply, i have replied to Jack a second time so i won't repeat it all again but i would appreciate you reading it and give me your opinion as i'm feeling worried that i haven't told the rhuematoligist everything and was asking Jack if ishould go back to my GP and tell him as i don't see the rhuematoligist till June.
    thanks once again. love Eileen

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    Eileen, I replied in the post right above the one you just posted. We were probably writing at the same time!

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    Thanks Sangye
    I ahve just seen your reply as ireplied to your first thread, I don't want to make a fuss but i know what you are saying, i don't get on very well with my Rhuematoligist and in the past 10months i have been under his care he has been rude, has said on one occaission why are youalways ill when you come here!!!. this time i took a friend with me and he was a bit different. Well no i have been feeling terrible headaches jiont pain purpera marks on my arms and chest as well as a chest infection to mention other things.
    Thanks again Eileen

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    I totally understand. He sounds like my first rheumy who almost killed me. You're right not to go back to him.

    Okay, so we've got to get you to a Wegs specialist asap. I question that chest infection-- it's often Wegs masquerading as an infection. I think you said you're in the UK? Are you anywhere near Cambridge to go to Addenbrooke's? They're a major Vasculitis Center.

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