Has anybody seen this booklet quite old but is lots of info
http://www.stjames.ie/Patients/Patie...s/Wegeners.pdf
All best
Stephwest
Has anybody seen this booklet quite old but is lots of info
http://www.stjames.ie/Patients/Patie...s/Wegeners.pdf
All best
Stephwest
That was very good reading, thanks for sharing. I should print it out and take it to some of the drs. I know !! How are you doing on your pred reduction , Steph?
Life isn't about how you survive the storm, but how to dance in the rain !
Thanks for that. It is very readable and informative, and I bookmarked it.
Anne, dx'ed April 2011
That's great Stephen. I shared it with our Aussie and NZ facebook group.
It doesn't matter when it was produced - I think its the best one I have read, so far
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
It is easy enough to read that I had thought of sending it to my family members (siblings) who still know little about WG and for whom it usually goes in one ear and out the other. I think a lot of you probably know the feeling. Although a bit outdated, it does apply to me, since my WG was brought into control by CTX and pred and I didn't take RTX (yet). But I probably won't send it, because it is long, and I doubt they will read the whole thing. Maybe someday they will wish they had known more about the disease.
Anne, dx'ed April 2011
Hi still on 5mg Pred -- no recurrence I am pleased to say.
Still have lot of lower back pain due to meds weakening my muscles, physio disappointed with recovery rate due to drugs ( gave him printout of WG booklet )
To eliminate possible Kidneys causing pain and not damaged muscles ( same area ) I bought the Urinalysis Multistix SG made by Siemens code ref 2741 to test for blood, protein, PH and much more as mentioned on page 7 -- all results are normal -- good to know in your own home.
Winter here in Ireland does not help cold, wet and miserable, OH for some summer sun again.
All best
Steph
Hi Steph,
I found it some time after I was diagnosed in 2009 - at the time it was the best document I could find and wished it had been available to hand me at the point of diagnosis as it probably took me 3 months to build up the picture of what I had! It gives a fair summary although, as Pete says, it is, in some respects, a little outdated now. For a more complete / comprehensive guide the "Routemap to Vasculitis" from the Vasculitis UK website is more up to date and probably worth downloading - doctors in the UK are using it these days!
Regards, Peter
Thank you for that great info! I will print and give to everyone that keeps asking for the past 7 years, what is it that I have.
Jolanta
Thank you for the info. Very useful and interesting. I know it is somewhat old but so am I (:
thanks again
John
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