Everyone with WG or suspected WG please join.

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If you have read my profile, my name is fraser, i have Wegeners or WG (even though the name has changed) 

And the first thing is i am not scared anymore, i just want to say that as i have had the condition for 6 years. I was 15 when diagnosed i am now 21. it has been hell!

with no one to turn to and no one to understand as in a 15 year old no one knew what to do?

I started out with very bad joint pain and rashes on my ankles, then it moved to lung failer and kidney failer after a biopsy to make sure it was the condition. I was stablised very quickly 2 weeks in fact from 10% lung capacity to recovered (to what i can be). It has lead to stresses to losing jobs to losing friends! to falling out with everyone because you dont know whats going on and your scared.

Not anymore i have had a lot of help over the last 3 years especially, i tell you what made me have courage and inspiration, a young lad called Stephen Sutton (look him up if you dont know him) and the army. I always thought to my self they have had their legs and arms blown off and they carry on so can i! and things like that kept me going untill now i embrase my condition in a way. I am brave i am strong and i will get through this.

Which leads me to this, if you want to talk to anyone that you feel you can't please drop me a line because, i know, and i understand.

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8 Replies

  • Posted

    Hi Fraser,

    Reading your story makes me realise how lucky I have been to lead a pretty healthy life until reaching my 60's!  Its only  this last 4 years or so I like you developed multiple join pain, rashes etc., and then 12/16th months ago started with other symptoms - chronic sinusitus, hearing loss, inflamed gums etc., now peripheral tingling and numbness.  These symptoms together with blood/urine tests have enabled a diagnosis at last Wegeners GPA!  I too felt frightened/shocked at first but am coming terms with things and am determined to carry on with life as normal as possible.

    I was only diagosed 2 mths ago and am at present having cyclophosphamide infusions, down to 40 mg steroids, anti biotics, and from yesterday medication for oral thrush- a side effect of the medication apparently.  I expect you too have had similar conditions, and I a looking forward to seeing improvements - the joint pains have definitely improved and am hoping one day to be off a lot of this medication.

    Anyway, just wanted to wish you good luck with your future and hope you manage to keep this awful disease under control and continue to get the help you may  need.

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  • Posted

    Well done you Fraser for not letting your mind take over your disease and not allowing it to beat you. I am not a Wegeners sufferer but my wife has been for the last 12 years. I am sure she has been to hell and back but she has always been positive and very brave. Of course in the beginning she was a victim of the ignorance that surrounds Wegeners and ended up as an emergency in hospital with renal failure. There it was diagnosed by her consultant who was furious that it had got that far  because plainly her GP had been messing about for weeks and weeks of course not knowing what was wrong with her and wondering why her body was shutting down. Unfortunately her consultant retired esarlier this year and he always said to her if you don't feel right go for a blood test and ring me (through his secretary) and he will have a look this worked fine because 10 ears ago she had a relapse and of course he was right on it. Some 10 weeks ago my wife developed a chronic cough did not feel right made an appointment with her GP and rang the new consultants (who she had not yet seen) sec and the consultant rang back and said we cannot give that level of care however the outcome was she went for an x-ray and blood test a few days later the consultant rang to say he did not expect to see what he saw on the x-ray and had made an appointment to have a CT scan. she has now had an appointment come through to see a respiratory consultant next Wednesday. My wife still does not know what is on the CT scan whether it is Wegeners related or not. All the best with your ongoing treatment. Don't let this thing beat you campaign for earlier diagnosis a cure and better treatment.
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    • Posted

      So sorry your wife has WG, I hope she is feeling better.  1 thing I have read that we all appear to have in common is how we were all sick, went to the doctor's hospital, etc and were not diagnosed until something serious happened to us where we had to be admitted into the hospital. My complete story is so long, so I don't share all the details but doctor's need to be more educated about WG/what is causing this as I keep reading no known cause.  I bought a Wegener's book, this is not a new disorder/disease it's been around for sure since the 70's possibly a little bit before this.  I was asking questions to 1 doctor who was frustrated as he said I was asking questions about methotrexate that no one else has asked him.  My doctors have been very good, just saying and praying they get better educated about WG.  Take care smile
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  • Posted

    Thank you guys for your posts, i am currently undergoing retuximab treatment in the next few months, please forgive me for not answering. 

    I will reply soon!

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  • Posted

    Hi Fraser, I hope your rituximab has gone OK. My lovely daughter is 14 and has recently been diagnosed, she is on 60mg prednisolene a day plus MMF and has just had her 2nd half bag of intravenous rituximab, the first full bag had to be abandoned as she was in too much pain. I am desperate to find her some source of comfort, something postive at this really bleak time and your words seemed to convey that you understand.
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  • Posted

    Hi shanon , this is distressing to hear at the age of 14 to be diagnosed with WG , the first few months are the hardest because it is an anomaly and its finding a routine with her condition and how it is treated, i hope that the treatment is going as best as possible and she recovers quickly. My advise is to be to take things as they come and  confront them with a brave heart. If there is anything you need please ask and i will answer them as promptly as i can. Keep a positive mind there is light at the end of the tunnel
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  • Posted

    Thanks for sharing your story Fraser.  I can relate, the part about being scared as yes hoping to stay in remission and that this disease doesn't attack other organs etc.  I think this is the best way to cope with it as you said some people are much worse off, it's the unknown that is scarry, but like most things in life there are no guarantees.  We just have to try to live our life each and every day the best way we can!!!  smile
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  • Posted

    Hi! My name is Crystal and I live in Dallas, Texas. I was diagnosed with WG thisFebruary. I have had a chronic ear, sinus, and cough on and off for almost 3 years. I thought I had suffered somewhat but after reading through this forum I color myself lucky. I have started my rituxian infusion yesterday and I have 3 more to go. I'm also on a crap load of prednisone which is a real pain in the can as I am type 2 diabetic. I was referred by my specialist to go to Cleaveland, Ohio to the Cleaveland Clinic. It's the number one hospital in the U.S. For treating WG. I know you all are in the UK but has anyone tried to reach out to the U.S. for treatment?

    Thank you for sharing your stories. It helps me remain positive and that we will get through this crap one way or another.

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