Discussions By Condition: Kidney conditions

Hello !

Posted In: Kidney conditions 10 Replies
  • Posted By: Anonymous
  • March 26, 2006
  • 00:14 PM

Hi....
I'm a 48-year-old UK male and was diagnosed WG in February 2005. Because of delayed diagnosis, I nearly didn't make it. I spent over 7 months in hospital and my body took a hammering. I'd be interested to talk to any fellow sufferers and particularly those who also were diagnosed "late" to see what the effects were on them.
Thank you !
Ian

Reply Flag this Discussion

10 Replies:

  • Hi Ian. My daughter Amber (age 23) has recurring mastoiditis - she has had two mastoidectomies on one ear and now the other ear needs one also. She also has uveitis (eye disease). The doctors suspect Wegener's but all of the blood tests and the biopsies from the material taken from her ears come back negative. Did you have trouble getting a correct diagnosis? What treatment did you undergo (they are talking about chemotherapy for her, which she is more than ready to do if it will help). Glad you're feeling better! Also, anyone else reading this post, we are looking for a referral to another specialist in the US. Cheryl
    Anonymous 42789 Replies Flag this Response
  • Hi Cheryl..I'd given up hope on someone replying in this forum but by chance I decided to have a final look today!I'm very sorry for what your daughter is going through. The symptons certainly sounds like Wegener's. I like most victims am learning all the time about the disease. There is a blood test that's done called ANCA (Anti-Neutrophilic Cytoplasmic Antibody) which is very valuable in the early diagnosis of Wegener's - if you go to.... http://www.wgassociation.org/aboutwg/anca_in_wg.htmlyou'll read about it there - a bit technical however you'll see the idea.I had some sinus involvement but thankfully no eye problems. My "symptons" began with what seemed like an ear infection. This dragged on for four months when I became almost deaf in both ears. My joints became unbearably painful and I was practically bed bound. I then began coughing-up blood and parts of my lung. FINALLY I was admitted to hospital having been "turned-away" 2 weeks previously. I was lucky to survive. Initial treatment was high doses of steroids (which my doctor should have prescribed a long time beforehand when my joints were so bad) and high doses of a chemotherapy drug called Cyclophosphamide - both by IV. I think in the States Cyclophosphamide is called Cytoxan! I'm home from hospital 8 months and currently on (amongst other things) 50mg Cyclophosphamide orally daily and 7.5mg Prednisolone orally daily. I see my consultant end of June and hope to reduce the steroids further (was on 12mg on leaving hospital) and also to talk about reducing the Cyclophosphamide - this drug is very strong and long-term use is not desired. Thankfully I haven't had too many side-effects from the drugs - a rash, occasional nausea and weight gain.It has only recently occurred to me that back in 1998 I had a lot of problems with my teeth & gums. I had "toothache" in my lower jaw at the back in both sides. My dentist drilled and filled the 2 back teeth on both sides a number of times but the "toothache" wouldn't go away. He then extracted the 4 teeth (2 either side) and still the "toothache" wouldn't go away. I've always had that feeling in my jaw since and I'm certain now that it's inflammation due to Wegener's.I've made contact with fellow sufferers in the US and the UK through forums such as this and have learned a lot and also received a lot of support. If I can be of any help to you and your daughter, please let me know.My best wishes to you both!Ian
    Anonymous 42789 Replies Flag this Response
  • Hello My name is Gloria, I live in England and was diagnosed with WG in September last year. I had suffered with my Sinuses for some time and when returning from a Holiday in the Caribbean had an earache which I put down to Cabin Pressure. ( Before my Holiday, I had experienced a lack of energy and also had a painful foot joint, which my GP said was Erthema Nodosum. This also affected my knee joint. I recovered from this and then experienced pain and stiffness in all my joints and at my tender age of 56!! put it down to the start of rheumatism.)The earache I was suffering from got worse and I had two courses of anti-biotics and the "infection" seemed to spread to my throat, sinus and chest. I had trouble breathing without coughing. I then had pains in my chest and upper stomach. My joint stiffness got worse and I had found it more and more difficult to move due to pain and not having the energy to move. My GP sent me for a chest XRay and blood Test (ANCA). Although this disease is rare,( I believe 1 in 50,000) my GP already had a patient with WG and I think this helped him in his diagnosis. Unfortunately, WG mimics the symptons of common illnesses like chest infections, etc, and goes undetected far too long, while the patient is fed a number of anti-biotic courses, but to no avail.I have a very good Specialist and I am feeling much better and back to work. Like you I am taking 50 mg Cyclophosphamide daily, also 30 mg daily Prednisolene. and 960 mg of Co-Trimoxazole(Anti-Biotics) weekly, as well as aBone supplement tablet weekly (Alendronic Acid).My right ear is not 100 per cent I have difficulty picking out a conversation if there is a lot of background noise. I also find I get chest tightness and sinus pains if under stress. If I climb more than one flight of stairs or a hill I am out of breath and my muscles hurt. I am ok on flat ground.I find this illness frustrating, as previously I was energetic with a lot of stamina. Having said that, I am very glad to still be here and hope that with time I will go into remission and lead as normal a life as I can. You may find this website informative, I know I did. It is:http://www.wgsg.org/whatis_wg.htmlHope this helps.
    Anonymous 42789 Replies Flag this Response
  • Hi Gloria...Sorry to hear you've been affected by this disease! Thanks for replying. There's a tremendous US based site www.wegenersnet.org with (amongst other things) an excellent discussion forum. There's plenty of "Brits" use the site so you won't feel like an outsider. It's good though to see how the disease is being treated in the US as opposed to here.There's a "private message" facility on the site, and if you want to discuss anything further with me please contact me via this means. You'll find me registered under "Ian" (thought long and hard about that one!).Thank you again for replying - keep healthy and optimistic!Ian
    Anonymous 42789 Replies Flag this Response
  • I am trying to get information, thank you for the wegenersnet site.I have finally had a diagnosis but have not been told very much further tests are being done to see how advanced the problem is.Prinney.
    Anonymous 42789 Replies Flag this Response
  • Hi Prinney..If you've been diagnosed but not admitted to hospital, I think and hope that it means they've caught it early on and with luck, you'll just need to take medication and hopefully lead a normal life!Hope the wegenersnet site is useful to you!My best wishes to you!Ian
    Anonymous 42789 Replies Flag this Response
  • All - Thanks, Ian, for responding to my post - I haven't checked this message board for awhile, obviously. Amber started on cytoxan five weeks ago - still no improvement. She had a third surgery for mastoiditis but is still getting tons of drainage and has a staff infection that antibiotics won't touch. She is also on 45 mg. of Prednisone a day. She also has recurrent pain in her knee, like arthritis, sometimes so bad she can't walk on it. An MRI of the knee showed nothing (no arthritis). Keep in mind that this girl is only 23 years old. Her rheumatologist isn't convinced she has Wegener's, because she has no lung involvement. We live in Minnesota and if the chemotherapy has had no effect by mid-September, her doctor says he can get her into the Mayo Clinic here. We'll see. I'd appreciate any suggestions or comments from this board. Thanks and blessings to you all - Cheryl
    Anonymous 42789 Replies
    • August 30, 2006
    • 11:47 AM
    • 0
    Flag this Response
  • Hi IanMy name is Mike I'am 39 years old and stay in Scotland, just had Wegeners confirmed in the last few weeks. Like you started off with an ear infection which led to deafness sinus problems and eventually severe fatigue symptoms, weight loss, night sweats, etc. This lasted about 5 weeks then admitted to hospital, where I ended up in critical care due to blood clots forming on the lungs, was eventually discharged after 3 weeks.Currently on 60mg prednisone, warfin and had one iv monthly cycle of cyclophosphamide, next one under 2 weeks away.Still in a bit of a spin with the diagnosis and turn of events and would be thankful of contact with others in similar circumstances and what symptoms exist and continue.fellow suffererMike
    Anonymous 42789 Replies
    • September 18, 2006
    • 00:29 PM
    • 0
    Flag this Response
  • Hi Mike...If you email me at baxie@lycos.co.uk I'll give you more info on contacts etc. Ian
    Anonymous 42789 Replies
    • September 18, 2006
    • 01:21 PM
    • 0
    Flag this Response
  • Hi. I also have Wegeners, and am currently on 1g cyclophosphamide fortnightly (IV), and 60mg steroids. I started to lose my vision after christmas, and I have on going tracheal stenosis. I hope this site helps some of you too www.wegeners-support.org Has anyone found they're ears being affected during treatment? Thanks Gwen :)
    GwenHill 1 Replies
    • January 26, 2007
    • 11:54 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.