Hello from Steph West in Ireland

[Widthofacircle]

Hi Brendan, amazing about your grandfather coming from Kilmallock, what was his name and do you still have rellies living here? I'm interested in the why's and where's of why I've come down with this and would like to try to meet as many sufferers in Ireland as I can manage - starting in the south west if possible. Do you know of any others in Dublin? I was at the specialist clinic yesterday and I have to say that the results were very encouraging and my steroid dose was reduced but the methotrexate was increased. I'm not really happy about immune suppressants but will stick with them for the time being. The only thing that was different about 2013 from other years in my life up to being diagnosed was that I had far too many colds from Christmas to May and then had all the symptoms of hay fever which of course turned out to be GPA (as it's now called partly due I think to Dr. Wegner having too many Nazi connections!!!). apart from that I used roundup in my new poly tunnel there was no difference to previous years. How about you? Hearing: I'm getting more popping and relief from echo this morning and am attributing this to the lower dose of steroids but I could be wrong and am looking forward to attending the Ear clinic in a couple of weeks to see what they say and then the eye specialist on Aug 30th. I have to give fair credit to my medical team who yesterday did express their astonishment at the improvement in the sight of my right eye - which they had declared as unrecoverable - but also their genuine delight for me. Many thanks and looking forward to hearing more in the future

Hi Stephen
My grandfathers name was John Joe Sheehy. I don't know of any relatives living there now. His family left when he was quite young. I have heard of one other person with Wegs attending the same hospital as me but I have not met him/her. There are also some attending St Jame's Hospital in the city centre. I am glad to hear that your eyesight is getting better. Eye problems were some of the latter difficulties I have had due to this disease and I know from experience how difficult that can be. Thankfully I am over the worst of that now albeit I have blurred vision in the right eye. Immune system suppressants are vital in the control of Wegs as the immune system itself is at the core of all of the symptoms. I have been on Cellcept for the past 4 years and have had no major side effects.. It does mean we are much more suceptible to infection and you should be on Septrin to protect your lungs in particular. I still have problems with my hearing from time to time but it generally comes right after a while.
Brendan

[pberggren1]

I would assume the glue in still in there Anne.

[annekat]

Ears are tricky... they seem to go through lots of changes and some are lucky enough for hearing problems to resolve on their own. I have had no eye involvement. Losing one's vision like that would be very scary. I'm really glad that your vision has improved beyond their wildest fantasies! Of course, they can get the credit by virtue of their good treatment. It sounds like you are in good hands. I'm also on methotrexate and having gotten used to it, have very little problem and think it helps me a lot. It's a fairly low dose, 15mg. a week, as I'm in more of a "maintenance" phase of GPA, though no one has used that word. I flared when they tried to put me on 10mg., though. As for pred, I'm on a steady 10mg. per day and there's been no talk yet about lowering it from there.

[stephwest]

Hi all sorry to be slow replying but resting for a day or so the Prednisolone has been reduced to 20mg day plus Folic Acid and the Methotrexate up to 20mg week from 15--is this a good move. The Doctor in charge of my case said I would be tired for months in a slow recovery-is this your experience. at age 66 in 2 weeks I can semi retire and enjoy our garden in the best Irish summer for 8 years. any more help on ears amplifiying my own head breathing/talking/eating would be great. How many GPA's are there in the World/Europe/Ireland/Uk can't find much info on Google apart from http://www.rheumatology.org/Practice...tis_(Wegener_s) All best please reply soon Stephen

[stephwest]

Not wishing to take anything from my wonderful team of medics but the improvement in my eyesight is totally a miracle and due to the large amount of prayers that were undertaken by no less than three parish priests, parishioners and friends, and in some part possible due to the eye exercises that I undertook myself in the morning and at night every day. The medical team actually wrote my eye off as unrecoverable in less than twenty four hours. The astonishment of the medical team when they finally accepted the improvement in my eyesight - at first they appeared to have written it off as wishful thinking on my part - was also greeted with delight for me on their part.

[pberggren1]

After all, God is really in charge. Prayer is a must, but mostly for our souls.

[stephwest]

Hi All. Not much to report at home in warm Irish Summer but still very tired sleeping a lot in daytime. 5 weeks now since waking with no sight in right eye but over the 5 weeks I can now see all around the damaged artery in back of eye, its like a little cloud in top centre. Use of polaroid clip over sunglasses helps to make clearer vision. A reduction in Pred down to 20mg a day has helped the hearing echoing a lot. The use of Saline spray (Sterimar) up nostrils once a day randomly delivers a large green/grey sliver of mucus on blowing nose. Are there any more cases in Ireland ( Apart from Brendan in Dublin--Hi Brendan) if so please contact me. My rheum consultant at the Limerick Regional says I was very sick and it would take 3 months to regain strength. I have lost a stone in weight ( due to mouth ulcer only eating water melon and salads until 2 weeks ago ) and am eating loads of fruit and good home made food now. Everybody remarks how well I look agggg. Cos I don't feel it. All best Steph

[Widthofacircle]

Hi Stephen
You may have missed an earlier post from me in this thread telling you of my knowledge of other Wegs sufferers in Ireland. In addition to that I have also heard of a 12 year old girl in Galway recently diagnosed. Weight loss is a factor with Wegs and then once on pred the opposite happens, you can pile on the weight however you will lose it again once pred is reduced. Are you getting cyclophosphamide infusions? If so this will leave you very tired and lacking in energy. Energy levels will rise again once you come off that. One thing that struck me about people commenting on how I looked was that when I was getting better, people said to me "you are looking well now but you looked pretty bad a couple of months ago". Yet when I met those same people when I was at my worst none of them said to me " you look pretty bad". This is human nature and funny to look back on but it does tell me be wary of people telling you that you look well. If you don't feel well it is because you are not well and be sure to make it known to your doctors. Getting the meds right is the key to getting better and the way to do that is to be sure to keep your doctors informed of everything you are experiencing. In addition to this the advice you will get from some members here will be invaluable.
Cheers and get well
Brendan

[stephwest]

blood patches under skin 19-08-2013.jpgHi All. Does anybody have blood patches under skin (see Image of my right arm) google says it is thin skin and I have knocked it but with all the GPA stuff who knows I take as part of the meds 75 mg acetylsalicylic acid as a blood thinner any ideas??? Please repay with anything All Best Steph West

[Dirty Don]

Patients on blood thinners bruise easily...