Joining a new club

[KaseyP]

Hello. My name is Kasey and after being diagnosed with PMR in July 2017 I'm learning all kinds of things about this disease thanks to PMRGCAuk and reading Kate Gilbert's book. Thanks for great resources. I have never experienced, and hope to never experience again, the pain I went through in my 4 week acute phase. I was diagnosed and started prednisone at 20 mg/day on July 17 with immediate relief and am now down to 15 mg. I'm very interested in taper ideas and hope to be off the prednisone as quickly as possible without flaring. I'm eager to learn about healthy eating as well. I feel very well right now - quite back to normal in fact, but it sounds from my reading on your website and in Gilbert's book that I can expect some more of that pain as I taper.

[Janann25]

Welcome to the club - says she with her tongue firmly in cheek! 😉😉. I was also diagnosed comparatively recently (In May) and have had so much support and information from the other "members" of this club. I started reducing at the beginning of this month and am doing it very slowly - I have learnt the hard way that this illness dictates how quickly we can reduce, regardless of what we would like to do!! I'm sure that one of our very knowledgeable members will be along with detailed information but just wanted to say hello and you're definitely in the right place to get the support and help which you need.

Take care

Jan

[KaseyP in reply to Janann25]

Thanks Jan. This organization with its amazing collection of online info has already been a real blessing. Knowledge is power!!

[DorsetLady PMRGCAuk volunteer]

Hi KaseyP,

Welcome,

Glad to hear you got immediate relief with Pred, not all do.

A couple of points about PMR - it's not like most illnesses, it doesn't have a defined time limit, it comes (usually after stress of some sort, physical or mental or both), it stays anything from 2-6 years, and then it goes into remission. The is no cure as such for it, but the Pred controls the inflammation caused by the underlying condition.

You are given a high dose at the beginning to get the existing inflammation under control, from then you have to reduce the Pred to find the level you actually need to live life without pain. Which you can do, I did. I reduced from 80mg (GCA not PMR) to zero without a flare, and that's because I reduced slowly controlling the inflammation until the underlying GCA went into remission. I know some aren't as lucky as me, but it can be done.

Unless you are very lucky and your PMR goes into remission quickly you will not be "off Pred as quickly as possible" - unfortunately it's not up to you! You can help by being sensible, not overdoing things just because you feel better (you still have a significant illness), learning to pace yourself. As for eating, just stick to a normal healthy diet, cutting down on refined carbs. However you will no doubt still get the hamster cheeks - par for the course I'm afraid.

Sure you'll be back with many more questions during your PMR experience. Good luck.

[KaseyP in reply to DorsetLady]

Thanks DorsetLady for this good info. That gives me great hope that you've tapered without a flare!

[DorsetLady PMRGCAuk volunteer in reply to KaseyP]

Yes, but it took a long time!

My GCA lasted 5&half years - maybe longer than some because the first 18months it was undiagnosed, so therefore well established.

But as we are always saying, nobody can say at the outset how long your GCA or PMR will last, for some it's as little as 2 years, for some it's a lot longer. Unfortunately there's nothing you can do to make it go any quicker than it wants to, you just have to learn to live with it, and sometimes that's very frustrating. But it is what it is!

It's like a guest overstaying their welcome - you want it gone, but no matter how much you drop a hint it hangs around!

Take care.

[jinasc]

go to pmr-gca-northeast.org.uk and click on the map on the home page and see if there is a support group near you.

Also explore the rest of the site............knowledge is power.

[KaseyP in reply to jinasc]

Thank you jinasc. I see that site has great info too. I live in the US so will look for some support groups in my area. I recognize the importance of communicating with others with PMR.

[jinasc in reply to KaseyP]

groups.yahoo.com/neo/groups...

This is a restricted group located in the USA. but you could join it.

[PMRpro Ambassador]

"I'm very interested in taper ideas and hope to be off the prednisone as quickly as possible without flaring."

We all do - but however you taper you will not get to zero pred until the PMR lets you. It came when it wanted, it will go when it wants and nothing you or anyone else can do will alter the time course. What you will achieve with sensible tapering is finding the lowest dose that manages the symptoms as well as the starting dose did. What it will be is still in the stars!

[KaseyP in reply to PMRpro]

Thank you PMRPro. I see that you have a wealth of articles and I am hungry to learn. Thank you for sharing your expertise.