Hi ya I have had problems with mouth ulcers on side of Tongue and inside of the mouth the skin peeled of the side of the tongue, also inside my nose the lining would dry up and peal the back of my nose would go crusty and sore I would wake up with blood streaked green gunk blocking my nose. My GP referred me to maxilolfacial consultant and I think he said that it was Wegners but after he said what it was he said I would need a biopsy on my tongue and stiches at this my mind went blank and the doctor was talking on so I never got a chance to say anything and I was wondering if anyone has had these symptoms and could I have Wegners.
Kindest Regards
colin
Hi yes unfortunately i have had the mouth ulcers and skin peeling from tongue nearly like a snail pattern. Ive also got the bad nasal crusting and severe sinusitis unfortunately sounds like you could have this dreaded disease, good luck anyway.
Tracey
Hi Tracy I'm still waiting for word of the biopsy but I find that I get tired very easly and my aches and pains have aches and pains, I had a motorbike crash in 1975 and am on co-drydamol gabapentine and arcoxia and they are not having the same affect but I don't want to go on to stronger medication, and apart from all that I'm getting sweats my face looks as if I have been out in the sun just hope that this is the mild form.Thanks for your reply.
Kindest Regards
colin
BIOPSY RESULTS SHOULDNT TAKE VERY LONG AND THE THING WIH THIS WEGENERS IS IT NEEDS TO BE TREATED QUICKLY AND AGGRESSIVELY. MINE SEEMS MILD ENOUGH I WAS BLASTED WITH 60MGS PREDNISOLONE FROM I WAS DIAGNOSED IN MARCH THEN ADDED AZATHIOPRINE WHICH HAD TOBE STOPPED AS IT WAS DAMAGING MY LIVER THEY NOW TRIED A NEW IMMUNO SUPPRESSION CELLCEPT WITH A REDUCED STEROID TO 20MGS SO PLEASE GOD IT WORKS WITHOUT DAMAGING THE LIVER OR I DONT KNOW WHAT THEY WILL DO, THE STEROIDS CONTROL THE INFLAMMATION IM NOT SURE HOW MUCH YOU KNOW BUT IT IS AN INFLAMMATORY DISEASE AFFECTING ARTERIES AND VEINS WHICH BRINGS BLODO TO VITAL ORGANS IF INFLAMED THE BLOOD DOESNT GET THROUGH WHICH IS HOW PEOPLE HAVE LUNG AND KIDNEY PROBS BUT YOU NEED AN MMUNO-SUPPRESSION MED TO SLOW DOWN THE IMMUNE SYSTEM AS IT IS ALSO AN AUTO IMMUNE DISORDER WHICH MEANS THE BODY SELF DESTROYS. YOURFATIGUE, JOINT PAINS AND MOUTH ULCERS ARE ALL TOO FAMILAIR TO ME BUT IF YOU HAVE NO BIOPSY RESULT YET YOU CAN STILL HOPE ITS NOT WEGENERS AS IT TRULY IS AN UNPLEASANT DISEASE MOST PEOPLE ON THIS SITE HAVE BEEN MUCH MORE AFFECTED THAN ME FOR THAT I AM GRATEFUL HOWEVER STILL FEEL SORRY FOR MYSELF. PLEASE LET ME KNOW YOUR RESULT AND YOU NEED TO PUSH FOR IT TO GET ON THE MEDS.
ALL THE BEST,
TRACEY
Hi Tracy thanks for that info, I was begining to wonder what was happening to me, as well as the ulcers and nasal sores I was falling asleep and just feeling so tired and having sweats for no reason. I hope you are able to control your condition and get the correct level of medication.
Kindest Regards
colin
Hi Colin
just wondered if you had got yur biopsy results as yet?
Tracey
Hi Tracey I have still to go for the biopsy, I'm beginning to wonder if they have forgot me, it was scary enough when he said about a biopsy but having to wait all this time is not helping on top of this I had a xray for my hip and my physio has said that basically I do not have a hip socket and wants to refer me to orthopedics but I do not feel up to an op as yet.
Kindest Regards
colin
Hi colin
Really think you should chase this up. Im work in the NHS and people definitely get lost to follow up. The biopsy is fine, I had it done in my nasal passages when we hear the word biopsy we think \"cancer\" but the biopsy is needed for a definite diagnosis but if it is Wegeners you really need to get on some treatment. The earlier the treatment the better and of course the less damage. Some people on this site have been so so ill thankfully mine seems confined to my upper respiratory and aiwrways sparring my kidneys at present.
My advice would be chase this up asap.
Take care,
Tracey
Hi Tracey I phoned the maxilofacial clinic and they have said that the biopsy takes place at another hospital and they phone you when they have a space free, I would have thought that something like a biopsy whether for this or cancer you would be told how long you would have to wait so that you do not have the extra worry, I'm actually due to go on holiday to Devon from Tuesday so they have had to contact the clinic to tell them when I will be back, so I hope that I will have word by then but on top of this I had a xray for my hip and the report said that it was grossly arthritic my Gp has sent a referal to the orthopedic consultant but I don't think that I could go through such a operation at the moment. But I will keep you posted on the biopsy progress
kindest Regards
colin
Im amazed at how slack they seem to be taking things especially if they suspect Wegeners as as you can see from other peoples stories it is very important to start treatment asap. if you have Wegeners you def will not be in any form for hip surgery but maybe when you are feeling better it could be an option. I would be very anxious that you get this sorted asap. Do you have much nasal symptoms. I had persistent severe sinusitis with a gross discharge and crusting which is one of the first symptoms along with this I had joint pains, mouth and tongue ulcers and large black blisters on my lower legs, if any of this is familiar to her perhas you could ask your GP to try and expedite this for you? My biopsy was done the day I was suspected as having Wegeners.
Enjoy your hols and keep in touch..
Tracey
Hi Tracey my nose is bunged up I get pain behind my left eye both eyes are always gritty and itchy as is my ears ulcers on my toungue my gums swell and my aches and pains have aches and pains everything just seems to have become sorer and I don't know if it's my medication but I have been passing more urine and I become so drowsy it feels like I have been given a premed and I end up falling asleep, I did contact the maxilofacial clinic and they have said that it is another hospital that will be doing the biopsy and the nurse will contact me when the have a slot but it is just unfortunate that I am booked up for my holiday and won't be back for two weeks and I hope that I will hear news then.
Kindest Regards
colin
Did you have any blood tests done as usually your inflamamtory markers are raised ie: ESR and CRP. well not alot you can do only wait i guess. do your best to have a good holiday sounds like you need the break.
Regards,
Tracey
Hi Tracey have now got my appointment for this Friday for my biopsy will let you know how things go
regards
colin
Hi Colin
Hope you had a good hol. im glad you have got your appointment through and hope it wont be long before you get the results, let them know your anxious to get a diagnosis as if you need to be on treatment its best to get started as ap. God, I bet you really nervous, its a horrible worry hanging over you, please god you be ok and if it is Wegeners it is early and meds will sort it for you. Please do let me know though Im only here Mon and tue next week then off for 2 weeks holidays.
Best wishes,
Tracey
Hi Tracey that's the biopsy done five stiches and a Gold Star for being a good boy, the doctor doing it said that he did not think it was anything bad and the results would take about six weeks so it will be a long wait.
Hope you have a great holiday.
Kindest Regards
colin
Well heres hopin your not suffering from Wegeners. Wow 6 weeks a long time mine was a week but with a bit of luck you will get the all clear
Tracey
Hi Tracey it is a long time and it was a different doctor that had seen me and he looked about eighteen I don't think that I will have any fingernails by the end of the month
kindest Regards
Colin
Thats me back from hols had a great time and no flare ups, thankfully. Any word on your results yet cant belive they reckon 6 weeks i would phone them up i had my result in days. Are you still having the problems with joint pains and mouth ulcers etc.
Tracey
Hi Tracey that's great that you enjoyed your holiday and even better that you have not had any flare up's, I go to the clinic on the 31st so I hope that I get results then, but ulcers still popping up and sore gums my eyes are driving me daft with itching and I have started getting pain off and on in my left ear wake up during the night with the sweat pouring off me and when I came back from holiday I had lost half a stone in two weeks, but the pain in my hip is kind of taking my mind off things just now I just can't get comfortable at all it's sore to sit and sore to stand although I have a laugh getting showered in the morning it's like someone playing castinets with all my joints clicking away as I try to dry off, but I will let you know as soon as I get word.
Kindest Regards
Colin
Not too long now til you get the results Im still hoping its not Wegeners but not at all sure theres def something going on.
Let me know as soon as you can.
thinking of you,
Tracey