Newby

[cardboardcutout]

Hi just found out about this site

Diagnosed with PMG in December and struggling now to get below 6 mg prednisone . I am 54 and work full time

Any tips welcome

[jinasc]

That is a fast reduction, what did you start on.

Visit this website - pmr-gca-northeast.org.uk and read up on it all.

Tips and Tricks are all contained in a booklet called 'Living with PMR & GCA'

"Have just read Living with PMR & GCA , a new booklet by North East Support. It really is superb – a book for patients written by patients who know what sufferers

are going through and need to know. Cannot praise it highly enough. Wish I’d had it when I was first diagnosed with GCA five years ago.

Eric Clark, , Award-winning Author and Journalist. ericclark.net"

Also send an email (address on the website) for two reduction plans, free of charge. They will help you.

The more knowledge you gain the better.

[DorsetLady PMRGCAuk volunteer]

Hi,

Totally agree with sambucca.

You might also like to read Kate Gilbert's book 'PMR GCA -A survivors guide' available from Amazon.

Also if you look at PMRGCAuk web site you find a list of local support groups - there may be one close to you.

Take care.

[cardboardcutout in reply to DorsetLady]

Thank you I read the book you suggested and it was helpful.

I will look for a support group in the area unfortunately it appears that the one in my area stopped but there must be another so will try again

Thank you and take care

[PMRpro Ambassador]

If you have got down to 6mg pred for PMR since December you haven't done badly!

In what way are you struggling?

[cardboardcutout]

Thanks perhaps I haven't done so bad but I am having lots of pain in my shoulders , neck and pelvic girdle areas . I find it difficult to get in and out of the car and find sitting for any length of time results in me getting up like a 90 year old and I get some strange reactions like I am putting it on as I look so well otherwise. Basically looking normal and feeling like **** is wearing me down. Having read a lot of comments on here has made me realise I am not doing so bad. Thanks all for your advice much appreciated.

[PMRpro Ambassador in reply to cardboardcutout]

Then you have almost certainly reduced too far. You are not reducing relentlessly to zero - you are looking for the lowest dose that gives the same result as your starting dose did. If the PMR symptoms have come back - you need more pred. It is a fairly simple equation.

We all look normal but can feel like **** - the only way to feel better is to be on a high enough dose to manage the symptoms as well as possible. There is no merit in struggling on a too low dose - you have all the downsides with no good things to balance it out.

[cardboardcutout in reply to PMRpro]

Thanks I guess I got carried away on a mission to get off steriods this seems to be the aim of my rheumatologist but he doesn't wear this body day in day out. I think I will slow it right down and take control. I need to find the right amount of activiy to ease the symptoms !

Thanks for the advice much appreciated

[PMRpro Ambassador in reply to cardboardcutout]

I'm sure it is - but, as you say, it isn't his pain and disability! PMR comes when it wants and goes when it wants. In the meantime you need the amount of pred you need...

[cardboardcutout in reply to PMRpro]

Thanks today I am back to being the cardboard cut out of myself that i can be at times (ok when i am standing but sit me down and i cant straighten up !) so I have gone back up and intend to take a different approach

Thanks Everyone who has replied to me

[jinasc in reply to cardboardcutout]

Send for the reduction plans - free of charge.

[e-mail]

[cardboardcutout in reply to jinasc]

Many Thanks have requested copy. Do u know of a support group local to essex? It seems the Southend one has stopped.

[jinasc in reply to cardboardcutout]

Go to pmr-gca-northeast.org.uk, click on the map and take a look at the whereabouts, then if none near you click on the link to the National Organisation.