A bit frightened of the possible prognosis. Thank you john.
only recently diagnosed with wegeners.hearin... - Vasculitis UK
only recently diagnosed with wegeners.hearing gone in left ear.Starting on predisnolone.,next week.Should not have have looked it up online
Written by
buddy70
To view profiles and participate in discussions please or .
40 Replies
•
John_MillsVolunteer
Hi,
John here. If you send me a private message with your name & address we can send you some info. Tell me also where you are having treatment and by whom - or what speciality.
But don't despair, with proper treatment the prognosis can be excellent. I have lived with WG for over 11 years and lead a pretty normal life (for my age!). But getting the proper effective treatment as early as possible is the key.
John
Hi Buddy70
Sorry you have reason to be here but I hope you'll find solace and help from the group here. As John has said, don't despair ~ life can and will go on, albeit perhaps differently. In additon to furnishing John with details I'd suggest you take a look at our Routemap at vasculitis-uk.org.uk/Route%.... This is an accurate and informative guide to vasculitis and offers a great deal of guidance in dealing with the disease.
In the meantime, feel free to share your anxieties & concerns here or privately if it would help and despite the apparent adversity, you've come to the 'right place'.
Healthy wishes.
Martin (with Wegener's granulomatosis since 2006).
blrkunal in reply to
Sorry, the route map didn't come through. Could you please repost the link or email privately.
Hi,
Was told the news last year in March. I was having treatment -Intravenous Cyclophosphamide until September. I was very careful while having the Intravenous Cyclophosphamide I was not doing much. It has taken me a while to be brave enough to venture out into the world.However I am doing that more and more now. Partly due to getting stronger after the inital treatment and partly coming to terms with living with the condition.
Good luck and use this site or theFacebook site Vasculitis UK to talk to others. It helped me.
Hi Buddy, I too looked it up online and scared myself silly. I have had WG for 12 yrs now and life is fine with me now. I lost 70% hearing and now wear bilateral digital (free on NHS) hearing aids. WG is not a death sentence, Very good advice from the people here, we've all been through it or currently going through it.
Listen to your body and rest up. I'm well, fit( ish ) and I've stopped searching on line, this is the best web page you'll find for advice and support . Good luck
Llinos
Getting told you have WG is scary and you go through many mood changes not just because of the steriods. It just takes time to accept these things and adjust to life with WG.
Families have their own issues to deal with when someone close gets news like this. It is difficult for them to come to terms with it as well and your girls have lost their mum already. Sometimes that makes it more difficult for them.
Good.
I have had WG for 21 years have had some ups and downs along the way, be postive and rest when your body tells you .I too lost my hearing in my right ear .This site is excellent for helping people with all ranges of Vasculitis as is the facebook page. Good Luck .
Gilrose.only came on site yesterday,but the feedback has been great,So far hearing loss complete in left ear. audiology trying to increase level in right hearing-aid. How is your hearing in left ear? Have had hearing aids for 5yrs,any chance this could have been early sign of wg. Nice to speak with you john
buddy70 .I have very good hearing in right ear. My WG started with a burst eardrum which didnt heal had antibiotics for over 5 months before other symptoms of WG kicked in ,I was very lucky in that my GP had just finished his training at my local hospital (whose wing was he under ....my now consultant), so he knew lots of the symptoms, 21 years ago I count myself very lucky to have got treatment so quick. Sadly a hearing aid in my right ear would be of no use as hearing has completely gone. Take Care Gill.
Buddy they told me at Ninewells NOT to look up Wegeners on the net. - especially anything from US sites. Make sure you are getting correct information which is specific to the UK.
The internet is a mess and in fact I now get all my info on my condition from this site right here. It's all you will need believe me.
buddy70 in reply to
Kimbangu thank you,i've learned my lesson
As the others have indicated WG is pain in the neck and can in some cases be very nasty. However for most people the right treatment allows one to be able to enjoy many years of fruitful life. I was diagnosed in December 2010 and was back at work by the following July, yes I get bad days but many, many more good days
Hi Buddy70, I was diagnosed exactly 12 mnths ago with WG and it is very daunting. However, the best advise I can give is stay positive. Take each day as it comes, rest when you need to and listen to your body. You already learnt not to read too much on internet , it is better talking to ppl with experience. Also have a good liason with consultant treating you and dont be frightened to ask them any questions if you are worried about anything. I am now living with the invisible disease having gone thro 6 mnths treatment and life is GOOD ! Good Luck
Hi. Sorry you have cause to join this site too. I have been on steroids and immuno-suppressants of various kinds, for well over 2 years. I found it's as important to understand your medications as it is to understand your disease. BUT this is overdone by our access to everything on the net, In short, all we need to know about the medications is provided in the packaging! Take care.
I was almost deaf, both ears, by the time I was diagnosed with WG. I was hospitalised immediately and started high dose prednislone. My hearing miraculously came back within about 1 day - such a relief!
hamble99bVolunteer
hi, just adding to the list, I've had wg since 1992 and it's under control with the meds.
regards, sandra
Hi buddy70, I have WG and was diagnosed in October 2008 and have kidney, ENT and eye involvement. I have found all the people on this site and Vasculitis UK very support and helpful. There are lot of local groups for support too. I had three months off work initially and went back part time but work two jobs now with more than full time hours. Have had a few blips along the way but now starting to feel almost human again. There is a life with WG but make sure you get the best treatment you can and as everyone says listen to your body. Sandy
Sandy.thank you for your thoughts.Have found the site to be a great help.You mentioned eye trouble.i had cause to see optician about 3 months ago,with the feeling that you have something in your eye.Got drops told to swab eye with baby(weak) shampoo and it cleared This week,5 days after diagnosis,eye problem has returned,hopefully a coincidence but another point to see my consultant about. john
I have posterior scleritis which I don't think can be picked up by the Opticians but I may be wrong, mine was only picked up by ultrasound scan which the eye Consultant did. I get pains in the back of my eye and they are extremely dry and feel gritty. The eye Consultant at Addenbrookes has given me Lacrilube to use every night and when it was really bad had preservative free eye drops every two hours. Hope you managed to get everything sorted. There are other things that I have seen on this site that can cause dry eyes and mouth called something lie Scrogen's - not sure of spelling. Hope this helps. Sandy
Hi Buddy, I too have GPA aka WG for past probably 15 years but only treated properly in past 3 years with steroids & immuno-suppressants. I am starting to feel somewhat better and more confident in the Doctors who are taking care of me (having been left in the 'wilderness' so to speak for so many years with all the symptoms of WG) I too have eye/ear/lung involvement and perhaps some renal (being sorted out) but being cared for by a Vasculitis team of Docs is so important as this disease is quite rare and not seen much in the day to day life of General; Practise. So glad you are getting answers and glad you have found this wonderful group too. Take care..S&J
buddy70 in reply to
Thanks sheila.All a wee bit scary and strange at first but hearing from you and other forum members has lifted my spirits.Will keep everyone informed of my progress john
Hello Buddy,
Looking things up 'on line' the best way to give yourself all sorts of 'stuff'!!! If a possible 'side effect' was turing your skin green you'd be sure it was happening!
You have quite enough to concern yourself with without finding other 'possible' side effects. If you are genuinly worried, about something, do talk to your doctors/consultants but please don't worry about something you read 'on line'!
Good luck anyway
Best wishes
AndrewT
Hi Buddy and all supporters
I was diagnosed with WG some 3 months ago and I am on prednisone and cyclophosphamide medication.
My symptoms initially were high fever and cold shivers, reds eyes, sore throat but no headaches. Anti-biotics had no effect. Eventually after many tests and liver/ kidney biopsies the WG was confirmed.
What bothers me is that midway in my 20 days in hospital I developed,almost overnight, swelling of both feet with a dead sensation, ankle swelling, lots of shooting pains and numbness. The thumb and forefinger of my left hand also went “dead” – no muscle action and also numb. Both hands also developed a numb sensation on the skin surface which makes handling fine items and especially paper sheets difficult.
The above treatment has not had much effect although my doctors say that the blood and urine analysis show good improvement. The shooting pains in my feet have however almost disappeared. In the mornings my feet are fairly normal, only slight swelling, but once I start walking the swelling flares up and becomes very painful.
I have been monitoring support groups to find other people with the same symptoms but with little success. My condition is presumably nervous system related and I find very little information concerning this affliction. Can anyone please be of assistance?
John_MillsVolunteer
Hi hannesjooste.
You will probably get a better response to the questions about your own problems on this site if you pose it as a new question just about yourself.
Pain and loss of muscle control sounds like nerves being affected but swelling suggests vascular or other problems such as fluid retention - phlebitis - which is often related to kidney function, but you say that is OK. Another possible cause is thrombophlebitis, which needs checking out urgently - usually with an ultrasound or MRA scan. It does need checking out promptly just in case it is something serious. Is your blood pressure raised?
John
Hi John
My blood pressure is OK. Will check with doctors on thrombophelitis.
How do I go about posing a new question - please give me an idots guide.
Tx
John_MillsVolunteer
It's very easy. Just go to "Home" on HU. Then select "Questions" on the menu bar. Then click on the yellow box on the Right side of the page - and the rest is up to you. I'm sure you'll find posing your own question to be helpful.
John
