Hi and a big thank you to this forum. Combined with the experiences of you fellow sufferers and some really solid medical research, I've learned a lot about PMR in a very short time. I'm 75 yo and until recently working (by choice) in a stressful job.
I was diagnosed with PMR in Sep 21 after sudden onset of extreme pain and disability. Woke up one morning and couldn't move! I started at 50mg Pred which killed the pain in 24 hours and I'm now down to 3mg as of this morning. It's been very quick, But I've been lucky, I have a great GP and I've read heaps about this disease. I'm more or less pain free with just the odd occasional twinge. I know when I'm overdoing the stress bit it cos I get that build up of tightness in the head and shoulders. I've learned to be the opposite of a lifetime of my natural self and SLOW DOWN! Patience and reading my own body is my key to mastering this disease. My GP has blessed me with controlling my own Pred intake based on my feelings and symptoms and his regular blood tests.
However while the pain is settled, the fatigue is my major enemy now. I accept it but I don't like it. I'm trying to balance the Pred reduction and yet stay pain free while trying to stimulate my own adrenal/cortisol system back to its old self. I find the fatigue factor isn't researched much in the medical papers that I've studied.
So - Question - is the fatigue caused by the Pred or the PMR?
(I now live in Australia after emigrating here from the UK in 1973.)
Thanks to all you for your support for each other.
I wouldn’t be reducing any more for a while, stay where you are and give your body a chance to ‘catch up’……Prof Dasgupta, highly respected Rheumy, keeps some patients at around 2,5mg for a year to do just that. Not suggesting you need that long….but certainly a couple of months,
Yes! But there are various aspects to it. Fatigue is an inherent part of almost all autoimmune disease so in that context part of the PMR. It can be a side effect of pred (or other drugs) for some people though not all.
And at 3mg you are back into the territory of needing your adrenal function to become reestablished and the only way to achieve that is being at a low enough dose of pred to stimulate adrenal function. Achieving that balance is not easy, sometimes you have to accept a reduced QOL for a time.
Rod Hughes finds keeping patients at 5mg for up to 9 months lets the body catch up and makes the rest of the tapering easier. Prof Dasgupta keeps many patients at 2-3mg longterm to reduce the risk of relapse of the PMR but it also is low enough to trigger adrenal function while allowing most people to function safely. Adrenal insufficiency remains a risk factor for adrenal crisis for up to a year after getting off pred altogether - reliable function takes time to establish.
Thanks Dorset and Pro. Your experienced replies match my understandings of what's going with my adrenals and the risks therein. I've read a lot on here, researched a lot and listened to my GP and oddly enough, my dentist. He made a few pennies drop with his comments about Pred and dentistry.
All in all, I know I'm pushing my luck by coming down so fast. But my reasoning is that I crippled myself in a very "adrenalin demanding" job, lotsa stress etc. I've thrived on stress all my life, but at age 75 I forgot to listen to those that were telling me to slow it down. I was too old to be doing this at such a high demand. Eventually, it was my own adrenal system that slowed me down and I ended up with excruciating PMR one morning. It was like switching a light off. OK one minute, flattened and crippled the next.
I now believe that having removed that stress from my life and gone into full retirement I learned "how to actually retire and actively avoid stress". I believe I have an advantage over most people that haven't got that luxury of just relaxing and forgetting about everything and it's "not my problem any more". Therefore my logic is that I have one third of the cause of PMR removed. i/e the stress. Ergo, I've taken the chance to reduce faster than most can but thereby tell my adrenal system to buck up and get going. I'm pain free at 3.5mg for the last 4 weeks and I went to 3mg this morning. I'll stay there for a month and see what happens. My GP gets the blood tests done every few weeks and he agrees with my actions so far. But being pain free is only one part of the equation. The third part is the fatigue but even that is improving. I still enjoy my afternoon nap but it's no longer that feeling of being "hit with a brick" type of fatigue. I have a nap cos I like it. My energy levels have improved from rock bottom but still not as good as they were. My wife is happy to see me getting back into things around the house and my workshop.
All said n done, I'll keep pushing it and see what happens. Thanks to you guys, I'm aware of the signs of the PMR returning and dangers of what I need to do if all hell breaks lose in an adrenal crisis. I'll keep you informed on progress. Thanks heaps to everybody. Your comments have helped me to work out how this nasty little disease works.
"it was my own adrenal system that slowed me down and I ended up with excruciating PMR one morning."
There is no proof that that is the underlying cause of PMR although it has been posited and it is true that compromised adrenal function has been identified in some PMR patients. But not all by any means.
If the underlying autoimmune cause of the symptoms we call PMR is at a low level of activity then you CAN reduce speedily until you get close to the dose you are looking for. The lack of cortisol production is a factor of the use of exogenous steroid in the form of pred to manage the inflammation - actually totally unconnected to the cause of the PMR in the first place.
Slowing down the speed of reduction is to make things less uncomfortable as the body adjusts to the changing situation. And to reduce the risk of a potentially life-threatening situation if the body is in a stress situation and adrenal function isn't able to respond with a spike of cortisol to aid physiological function. It isn't the stress of a job that we mean though - it may be illness, infection, trauma both physical or emotional that you cannot avoid in the same way. Accidents are accidents by definition - not planned for. And a situation can change in a split second however careful we think we are being to avoid stress. If an adrenal crisis hits - you may not be in a position to do anything about taking action because you are in a state of collapse.
You may think you've cracked this PMR job but your body clearly isn't totally in agreement! Bit more kindness and understanding called for I think - it will thank you eventually!
Not by any means do I think I've cracked it. But if I don't push it a little bit I'll never get my own adrenal system running again. Put simply, "I'll never never know if I don't give it a go". This forum, my research & my own GP have given me all the knowledge and awareness I need to take a cautious but progressive approach to it. I have domestic support, a hospital 5kms away, two SRNs live next door & Ive adopted a very stress free life. I'll give it a go. Thanks you for your advice.
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