Recently diagnosed with Wegeners

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I have recently been diagnosed with Wegener's (I'm 32 and it has taken about 9 months to complete all tests etc).

​I would like to know if there is anything else I can do to relieve the excruciating pain I experience in my nose, eyes, ears and jaw?  Currently I have Codeine and oral morphine.  I start immunosuppressive drugs in a few weeks (waiting for second CT and the results) and im currently on high dose steroids

​I also had an operation 3 months ago to rebuild my septum wth a silicone button inserted in to my nose, however, since then the infection has continued eating away at the inside of my nose and I've noticed the tissue and leftover cartillage behind the implant has now disappeared.  Do I need a second operation to fix this?

​I feel quite scared because my whole life I've never had worrying health issues - and I feel alone because nobody really understands this illness - including me! 

​Its financially crippled me and I've had to move home for the last year of my university course.  If I couldnt' have moved home with my mum I dread to think what would have happened because I've been unable to work for most of this year.

​Any advice greatly appreciated - as I'm starting to see my mood drop way below a manageable level. 

Thankyou, Jess

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8 Replies

  • Posted

    Hi Jess

    Sorry to hear that you are going thru it. I've had WG for over 15 years and have had real ups and downs. Don't know where you live - UK? However, you must try and get referred to Dr David Jayne - Head of the Vasculitus Clinic at Addenbrookes Hospital in Cambridge. Dr Jayne is THE world's leading expert on WG. I got my GP to refer me, its a 21/2 hour journey for me and worth every mile. They look after 1000 patients with our condition and you can have telephone appointments too.

    Good luck

    Dave

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    • Posted

      Hi Dave, thanks for that advise - and really good that they do telephone appointments. After I posted this,someone contacted me from Vasculitis org and they have been really helpful and advised an urgent referral to a Dr at Birmingham QE. Now I've spoken to them I realise how much my NHS this end have been dragging their heels. I know the NHS is fit to burst but I wouldn't leave someone suffering like this! And I'm really hardy and it takes a lot to cause me pain!
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  • Posted

    Hi Jess  You really sound as if you have it bad.  I have had WG for the last 11 years although only diagnosed after eight and a half years, 3 hospitals and 12 doctors.  I now see Dr David D'Cruz at St Thomas's hospital in Westminster London who finally diagnosed me,  I have good days and bad days as do we all but all you have to do is hang on in there as there isn't much else you can do.  I would say that if your doctor is treating you well for WG then stay with them as you need continuity.  One rhuematologist I saw told me that he didn't know what was wrong with me as I didn't come up with any positive test and don't bother coming back!!  Now that I have found Dr D'Cruz (I stay with my daughter overnight the day before and go into London by train the morning of my appointment as we live in Northamptonshire) I am going to stay with him.  Please get in touch if you need an ear - can't do much but I can listen.  Good luck
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    • Posted

      Thanks for your comment. I'm really anxious about my future health. I guess take each day as it comes and know I will improve when they get to grips with it? It really is life changing stuff. And something so out of the blue!
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  • Posted

    Jess, so sorry to hear you are having such a hard time of this. I have had WG for 33 years, been out of remission 4 times and also suffered much damage to my nose/septum. Once you start the meds you will notice a dramatic improvement. Your moods are also impacted by the steroids, so please remember to give yourself all the time you need to heal from this terrible disease. I find I have to remind myself that all of my depressing thoughts are just from the steroids as I am normally quite a happy person. This will pass once you are able to start tapering down off the steroids after your other treatments. Talking about this all is a big help, for me at least, so keep the communications open. We are all here for you! 
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    • Posted

      Hi! Thankyou for this. I wasn't aware that steroids could effect your mood. That explains the crying! I NEVER EVER cry! Apart from then the pain has kicked off with all this. Can I ask what they did about your damaged septum? I worried because initially I was told it the hole was any bigger they couldn't have inserted silicone, rather they would have to use cartilage from my ear to rebuild. But I know it's bad up my nose,as I regularly wake up with black-bruising under my eyes! I'm a mess! My boyfriend is in the RAF and he works abroad and he is even considering coming home! Luckily my mum is amazing and I've been able to move home. Don't know what I'd do without her!
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    • Posted

      They wouldn't do anything for my septum sad  said if they put in a button my body would just reject it. I did have to have to nasal scrapings done though to remove scar tissue as I had absolutely no air way. Now I just have an open cavern where my sinus cavities should be. I consider myself lucky that I have not lost my nose entirely as I have been told this happens eek.   I use nasal irrigation (just some saline in nose spray) regularly throughout the day and this seems to help keep things "calm". I don't smell or taste anymore, and I miss that a lot! I am currently in an active stage of the disease and have also contracted shingles! If you can, get the shingles vaccine before you get this! It's horrible and people on immune suppressants are prone to get it, I know, this is my third time. Hugs to you! 
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  • Posted

    I was diagnose in 2012 after about 6 months. In live in us and I have been disabled from it. I have never had any nose stuff just no immune system and crazy things like enlarged spleen fevers for no reason colitis and breathing problems. I just hope I got right diagnosis cause my Dr said I am healed since I did 4weeks of ribtuixm treatment. So still have breathing issues and so far he said I am in remission but when I show him pics of swollen joints and can't talk cause voice is gone he said nothing to do with Wenger but I read different. Had poly on vocial cords and they were inflamed that Dr. Said he scrapped them down. But reohotologist said nothing to do with Wenger but I read different. Still scared every time I sick I have had shingles also.
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