My first post to join fellow travellers along this tricky GCA journey. The encouragement, support and mutual respect is truly uplifting.

[dartmoorlass]

Two and a half years into my GCA experience I've come to the conclusion that my kindly Consultant and GP who share my care, know less about steroid reduction than many of you seasoned travellers.

I'd been carefully reducing my pred from the original 500mg infusion following the positive cranial artery biopsy, (in the later stages by half mg every few weeks) had got down to 1mg when my Consultant instructed me to stop SUDDENLY for a blood test one week later to check adrenal function. I queried the abrupt withdrawal but he assured me that 1mg was only ensuring ad function and that my blood crp and pv(plasma viscosity) was normal. I again pointed out my unease but he insisted all was ok. Blood test result fine, adrenals ok.

Six weeks later, familiar pmr- type muscle pain in shoulder, upper arm and groin have started. Great difficulty getting up and down from seating position, stairs look like the Eiger and moving around the house is more than tricky. GP is on annual leave, still waiting for Consultant appt so have decided to restart prednisolone at 2.5mg daily, guessing that if I was ok whilst on 1mg, increasing to 2.5 now seems a reasonable option. I feel I'm struggling in the dark and would be so encouraged to hear if anyone else has had a similar experience. Best wishes to everyone with sunnier days ahead.

[piglette]

Your consultant was correct in that you need to stop the steroids for a short while, around twenty four hours, before the Adrenal function test. However you should have gone back to the 1mg afterwards.

[DorsetLady PMRGCAuk volunteer]

Hi dml,

Your first sentence sums it up very aptly..and unfortunately all too true it would appear.

I would have thought it was obvious that by the time you get to 1mg without any severe problems then your adrenals are working - so why did he want to check them?

Your bloods should have been okay, that's what's the Pred is doing- but that doesn't mean the GCA has gone into remission - as you have proved!

As many of us have shown 1mg does make a difference, in fact 0.5mg very often does! Really don't get why the specialists don't understand that.

Just for your info my GCA lasted 5& half years - average is about 4 years so don't be hassled into reducing again if you don't feel like it. Another thing the docs seem to get hung up about is that it only last 2 years - ok in some patients it might, but for the majority it's nearer 4!

Good idea to go up to 2.5mg - hopefully that will be enough if the inflammation hasn't built up too much over the last six weeks, but if you still have symptoms you know what to do! Hope it doesn't come to that.

Take care.

[dartmoorlass in reply to DorsetLady]

Hi DL

Thanks for your reply and comments confirming my experience that medics, no matter how well-meaning, don't always know best. Glad to report the 2.5mg seems to be doing the trick so from now on I shall be following my previous ultra slow reduction routine. In fairness to the Consultant, he'd suggested the blood test in response to my utter and absolute fatigue, literally barely able to place one foot in front of the other. On reflection, perhaps that could have been the forerunner of the later symptoms for which I'm now taking the 2.5mg.

My GP on her return confirmed my self diagnosis/treatment is what she would have recommended. Optimistically, 'all's well that ends well'.

Best wishes.

[DorsetLady PMRGCAuk volunteer in reply to dartmoorlass]

"All's well that ends well" that's easy for her to say - she's not going through it!

Glad to hear increased dose is working for you. And yes, especially at low doses, slow is best.

Take care.

[PMRpro Ambassador]

You are by no means the first person to find that 1mg was keeping things at bay and stopping it brought PMR back - some even reduced that last 1mg slowly!

Otherwise - everything piglette and DL said too...

[dartmoorlass in reply to PMRpro]

Thank you PMRpro for your reply which confirms the importance of slow, slow reduction. I won't be talked out of that routine by anyone in the future.

[dartmoorlass]

Hi Elizcarroll

Sorry to hear you've had a setback with the shoulder and groin pain which, combined with increased CRP and ESR suggests the need for increased pred. We can't mess around with GCA but steroids, taken in time, are the only known treatment which will ensure we don't lose our sight. When I was first diagnosed with combined GCA and PMR and told I would require steroids, I researched every piece of medical research available to hopefully find an alternative treatment. There was nothing. Many herbs and spices help inflammation but cannot save eyesight.

My pain etc has gone completely in the last few days since I've gone back on to 2.5mg but as many members have commented, we're all different in amounts to increase or decrease. Best of luck with what you decide to try, let us know how you get on.

Take care.

[dartmoorlass]

Hi Elizcarroll, late reply due to illness here. You'll have received your blood test results by now so will hopefully have had some beneficial advice leading to relief from your symptoms. Judging from so many comments on this site, the trouble seems to be that our various docs, specialists etc are also in the dark about our condition. It presents itself in varying degrees with so many of us. Many of us continue to go to work (albeit with some difficulty), others of us are completely floored suffering from utter fatigue, some even manage to go away on holiday. Yet the initial (and to date, the only) treatment for all of us is the evil but sight-saving steroid which also removes the awful pain and stiffness which otherwise can greatly reduce our independence. So judging from the many comments from fellow travellers on this site, we must look on the steroid as both a friend and an enemy. Overall comments here tell us to "hang on in there", things will improve, it may take some time but as DorsetLady tells us, we DO come through it. The main message from everyone seems to be 'keep steroid reduction slow, slow and even more slow'.

In my case it's been a very difficult 3 weeks, bed or chair most of the time, bloods are reasonable but my Consultant suggests it's my body's continuing adverse reaction to the steroids although my present daily dose is only 2mg. Hopefully as I reduce things'll improve. Hope to hear you're improving and no longer in pain.