Mrs K Good News

Bones, joints and muscles
1

I 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.

2

Mrs K,

Congratulations on already losing two stone 8) :cracker: and hope that the arterial scans all come back negative.

It is always great to hear of others winning their battle with PMR & GCA so well done you :D :bubbly: :goodluck:

Love,

Pauline

3

Meet you at the end of the tunnel!

Ragnar - free from Pred since December 2008

4

MrsK :cracker: :goodluck:

Hopefully, I'll be at the end of the tunnel to meet you as well.....unless that is I lose the plot again like today when I've mistakenly taken a whole 1mg tablet rather than the half or zero regime which I'm on at present! :roll: :silly:

MrsOxx

5

Wouldn't it be lovely if the tunnel got so crowded at the end it had to be enlarged.

Looking forward to joining you but a bit further to go just yet and meeting everyone else there,too.

6

Congratulations Mrs K and I will be waving the flag and cheering as you cross the finishing line........ Mrs O too ....... you girls have had a long 'haul' and I value all your advice and experience....... sending virtual hugs to you both and to others about to cross the finishing line :D

7

Congratulations Mrs K and O - so nice to hear such great news. Fingers crossed for the ultrasound. Do you know when it is yet?

Well done for the weight lost too. You are more disciplined than me - I have put on some pounds. It's easier when you are feeling well - I've taken my eye off the ball weight -wise with my latest problems.

See you all at the end of the tunnel

Beev

8

Mrs K,

so pleased to hear your wonderful news. I do hope the scans prove all is well. Lovely to think you may be off the steroids by end of December.

Shall you still come on here to advise us novices, even when you yourself have finished with steroids? Do hope so. Being fairly new to PMR, I, and I'm sure many others value all help and support you \"long term ladies\" can give :D

Best of luck,

Cheers,

Molly.

9

Great news Mrs K

What a struggle it is and fantastic news about the weight I am going to start now with my diet after my holidays as feel like a blob !!

Mrs G

10

Mrs G - Welcome back from your holiday - hope it was a good one! 8)

MrsO

11

Oh well done Mrs K, how wonderful , do hope all continues to go well with you, hope to meet you too at the end of that very long tunnel.

Cheers & good luck

Amycakes.

12

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. in my area.

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).

13

That is fantasic news! Got everything crossed for you, the light at the end of the tunnel must seem so close!

Good luck

Catie

14

Hi Mrs K,

I must ask my doc about the ultra sound scan, I had never heard that you could have that for G.C.A. to check inflamation .

So pleased things are working out for you.

Well done.Its been a long road , much longer than mine, but hopefully you have given me hope.

Thank you.

Good luck.

Amycakes.

15

Amycakes

It is not in general use, as far as I know and it is not just for GCA. I knew trials where going on in about two or three hospitals. Not my hospital, I think they are trialling it for something else.

GCA patients are not that common and as I said above, I was a first for an 'endgame' result.

I still have to see the Consultant to see where we go from here. I will try and get more info on it all when I see him but don't get your hopes hope as 'trials' can take a longtime, as they have to be absolutely sure of the outcome.

Also it would be five years next February from me being first diagnosed.

On the downside, a close friend has been free (well we call it remission) for two years and has just had to re-start the steroids as some of the GCA returned. As both herself and the GP knew the symptoms, it was quickly dealt with and 15mg held it instead of the usual 40-60mg.

This has quickly been reduced down to 9mg and it is all going well.

Finally Amycakes, progress is being made slowly but surely but we still need, cause, cure and friendlier medication, which are now being undertaken in various places. (see the Newsletter on the website).

Good Health in the future.

16

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\".

I know it can come back - but its gone and I am not even going there.

Hopefully the trials will be successful and the scanner will help in diagnosis in the near future.

17

I am there at the end of the tunnel to pull you out as I promised some months ago!

Congratulations!

Ragnar

18

What a great offer from Ragnar, MrsK

I'm still jumping with joy following your news yesterday! :bubbly:

Now if you get there before me, I'll be expecting to see both you and Ragnar at the end of the tunnel! :wink: :blackcat:

MrsO

19

Well done Mrs k - are you off the pred completely?? Stay on here tho - we will miss you.

Beev xx

20

beev

six weeks at 1mg starting from today, then off.

Then it could take up to a year for everything to kick in again, lose the weight and get back to whatever will be the norm, now the years have passed.