Booklet on WG from St James Hospital Dublin

[stephwest]

Has anybody seen this booklet quite old but is lots of info
http://www.stjames.ie/Patients/PatientBooklets/Wegeners.pdf

All best
Stephwest

[Debbie C]

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?

[annekat]

Thanks for that. It is very readable and informative, and I bookmarked it.

[mishb]

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

[Pete]

Has anybody seen this booklet quite old but is lots of info
http://www.stjames.ie/Patients/PatientBooklets/Wegeners.pdf

All best
Stephwest

This is very good, although it's getting a bit dated as new treatment regimens are put into practice. It's a good introduction to GPA/Wegener's that most people would find easy to understand.

Thanks for posting the link.

[annekat]

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 Although a bit outdated, it does apply to me, since my WG was brought into control by CTX and pred and I didn't take RTX (yet).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.

[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?

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

[pwc51]

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

[jola57]

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.

[John]

Thank you for the info. Very useful and interesting. I know it is somewhat old but so am I (:
thanks again
John