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mrs UK 
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Joined: 07 June 2008
Location: United Kingdom
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 Topic: Mrs K Good News
Posted: 15 September 2011 at 11:58am |
Just wanted you to share the ups, after all you have seen me through the downs. Had visit to Rheumy yesterday and he is booking an ultrasound/scan on temples and other arteries. He is sure that the GCA has taken a hike and wants to be absolutely sure, if it has, will be off steroids by end of December then the weight will drop off quicker, already lost nearly two stone so and as Clive says then the pressure will be off discs as it will be easier to lose some more weight, hopefully and that will solve the problem of the left leg. Fingers crossed. Mind I will still have to carry 60mg in my little box for the rest of my life (belts and braces). Light, at last, at the end of the tunnel. Fingers crossed. 
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Mrs UK
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RickF
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Posted: 15 September 2011 at 1:12pm |
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Mrs. UK,
Got my fingers crossed for you too. Hope the results are clear and you'll be able to get off the steroids by the end of the year.
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64 y.o. male Dx PMR Mar, 2010.
Started on 20mg Pred; currently on 10 mg.
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freesia
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Posted: 15 September 2011 at 1:12pm |
Congratulations, mrs UK!  I'm really happy for you! Hurray!!!!!!
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RDSwede
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Posted: 16 September 2011 at 3:04am |
Meet you at the end of the tunnel!
Ragnar - free from Pred since December 2008
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Celtic
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Posted: 16 September 2011 at 4:08am |
Hopefully, I'll be there to meet you too unless I lose the plot as I've done today by taking a 1mg tablet instead of my present regime of half a mg alternating with zero! I had my pill cutter there ready for the usual cut and before I knew where I was I'd swallowed the whole pill!  My pride in never having messed up with my pills over the last 4 1/2 years has taken a fall right on the last leg of the journey! 
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Pearl
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linnie
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Posted: 19 September 2011 at 1:04pm |
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wonderful,wonderful news.....so nice to hear positive news x
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bye bye size 14!
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luckycauk
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Posted: 22 September 2011 at 5:01pm |
Such a lift all of us get when one of us has good news to report. Thank you for sharing . Way to go! 
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luckycanuk
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mrs UK
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Posted: 09 November 2011 at 6:03am |
I promised I would let you know when I had had the 'scan'.
To stop you all tracking back, I had visited my Rheumy on another matter
and during the course of that consultation, he said he thought the GCA
had gone. But he wanted an Ultra Sound Scan.
At the time, I did not take much notice and said OK. However on
getting home, I suddenly realised that two years ago some hospitals were
taking part in trials with a new machine. The aim of those trials, was
and is to see if the machine can tell whether you have GCA or not,
instead of the invasive procedure of a biopsy. (This machine also does
other things, but I did not bother to ask).
Well, today I found out, mind it took me sometime to convince the young
Doctor to tell me that it was one of the new machines and I am the
first for an 'endgame' test.
I also talked the young Doctor into giving me a preliminary result and
its looking good - no visible inflammation. However he impressed upon
me that I should do nothing until my Rheumy talks to me about where we
go from here.
When I see my Rheumy I am hoping he will agree that we go down the
drop route, from 2mg currently to 1mg for the three months - then stop.
He was so positive without the scan, and thought if the scan confirmed
his thoughts, that I would be off and then within one year back to
normal. Whatever normal is for me.
I am quite confident about it all, because I know what all the symptoms
are (having had two major flares in the first 18 months) and still carry
60mg around with me and will continue to do so.
So, we wait again, till Rheumy contacts me.
I am now going to eat my Raisins and drink a large G&T (no ice and no slice).
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Mrs UK
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freesia
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Posted: 09 November 2011 at 9:02am |
mrs UK, that is fantastic news. You must be so relieved! Congratulations and continuing good luck to you. freesia
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mrs UK
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Posted: 18 November 2011 at 3:13pm |
Confirmation received in the most welcome letter I have ever had. In the words of the Rheumy
' The scan was entirely normal. There is no evidence of recurrent temporal arteritis.'
The last line breaks my heart.
"We do hope to set this up as a diagnostic service in the near future
for new cases but as yet still hasn't been fully resourced".
The new scanner is on trial for diagnosis of GCA, hopefully it will pass with flying colours and then a swifter diagnosis will be made. We are getting there - this was not possible 4 years ago.
Well, I now need to win the lottery 
 
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Mrs UK
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