I was instructed to reduce pred by my GP some time ago, dispite the fact that I've had 2 flares of the illness in the past due to reducing below 5mg. I've been on pred for nearly 11 years for PMR. I'd been quite happy on 5mg, but after reducing to 4mg this time, was ok for a while, but recently have felt like death warmed up, so to speak. Not only physically, but mentally as well. I found my memory was affected badly. Driving became difficult. Food made little or no difference to the symptoms. Dizzyness, lethergy, eyesight blurry, sleeping badly, and really bad constipation. This has been going on for weeks. 4 days ago, went back to 5 mgs. Today, I'm back to my normal self.
I would like my adrenals tested. This test has never been offered. However, I do worry though as to how I would cope without pred for one day, let alone 2 days inorder to make the test valid?
Pats
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pats555
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You don't do without it for a day. You just don't take it that morning - then when it is over you take your pred. The next day back to whatever time you normally take it.
It was the best three hours I ever spent in a hospital comfy chair, warm and a book I took with me. I fell asleep and they woke me up with a cuppa and they had put a bookmark in my page.
If your GP kicks off, ask him for a short cortisol test - done at the GP's at 9am in the morning.....the result will then jog them into action. Being on pred for a 11 years methinks it is absolutely necessary to have these tests before stopping or reducing your pred. If they stop they are putting you in danger of an adrenal crisis.
You don't have to go without - you just time it carefully!
In fact, the fact that it hasn't been offered if you are at 5mg or more is normal - a lot of endocrinologists wouldn't do a synacthen test at 5mg pred dose, it is still enough to suppress cortisol production.
Ask your GP to do you a basal cortisol test - the cortisol level in a blood sample taken between about 9am and lunchtime. You take your morning pred dose as usual the day before, and wait until after the blood sample is taken the next day. You would do the same for the synacthen test usually - occasionally endos want 48 hours pred-free before the test but it depends.
How long is it since you had a flare at below 5mg? After 11 years on pred it is likely to take a bit of time for the adrenal function to return but it sounds a bit as if, like me, your PMR is alive and well. It is becoming increasingly apparent there is one version of PMR that lasts a long time - there are several of us on the forum.
Hi, sorry a bit late with this, but thanks a lot for clarifying procedure regarding test. In 2016 had got down to 3.5 mg. PMR back with a vengence. Fell down the stairs twice because my body was so stiff, couldn't flex when my cat tripped me up. Little devil! My GP thinks I'm on 3.5mg but I take 4mg. Causing massive lethargy, so upped the dose to 5mg and feel fine now. One thing I cannot understand. Why are some doctors, including specialists, so ignorant about this illness and the long term affects of pred?
Last year, during lockdown, I had a phone consultation with a rheumy. When I said I was having great problems reducing dose she literally screamed at me, said I wasn't trying hard enough! She then slammed the phone down. After 11 years, who the hell would want to be on steroids if they didn't need them? Are these people crazy? Pats
I'd have complained about her. Totally uncalled for and VERY unprofessional. They want to try the pain and lack of function when you "try hard enough".
I had a similar sort of experience, I'd got to 5mg for the first time in about 6 years - took me over 4 years to get below 10mg. 4mg was OK and instead of resting on my laurels I tried for 3.5mg. Never got there - I had a flare in disease activity, a real relapse, as if it were a second episode. Had to go back to 15mg and have struggled ever since. I had got lower and then tapered for a test - and struggled even more since although that was at the start of Covid, literally the week lockdown happened here and at the beginning of OH's long final illness. All of it together ...
Just recently I had a really bad back problem, even ended up in A&E one morning as I couldn't move. They weren't much use but my rheumy sorted me out pretty well but it won't go altogether and the PMR has flared again. On 17mg I could barely move around the flat, luckily I don't have to do stairs because I would have fallen down them! I even felt really unstable in the flat. I added 3mg pred before the weekend - and the difference in the stiffness is fantastic. Even reduces the pain - tramadol doesn't.
My father had PMR, diagnosed at 65 years, and was kept on low dose steroids for the rest of his life, because his GP, after prescribing pred, insisted he come down quite quickly, then, totally unaware of the potential concequences, took him off it completely. My father collapsed and was rushed into hospital suffering from adrenal failure.
Why some sufferers recover from PMR reasonably easily, whilst some like you and I, seem to have a very long term, active illness, is a mistery. Perhaps we inherit from both parents, who knows?
I had this illness for at least 2 years before it was finally diagnosed, My GP kept saying it was a recurrant wrench injury. It culminated in me being unable to get out of bed normally, and I had to fall out onto the floor.
I saw another doctor, who knew what it was. The specialist I saw later said I was 'classic PMR'.
I had a brush with GCA whilst on holiday in Wales in 2011. The GP I saw seemed to be an expert on PMR/GCA. He said he has a pocket of it in his practice. He upped the dose of steroid considerably and said if I had that headache the next day, come back to me immediately. Luckily, it went and, touch wood, has never come back.
This year, I will have been on pred for 12 years. I am 76 years old, insist on doing all my own housework, shopping, and gardening. I live in a 3 storey house, so climb up and down stairs a lot. This has kept my bones strong.
Without this drug, I would become helpless if the illness flared, and then would have to up the dose, with all the consequences that would bring. Taking high dose pred is no joke!
The weather helps a lot. It's sunny, and lovely in Devon now.
I'm sure delayed diagnosis contributes to the long version - but Prof Mackie agrees there are several versions of PMR, at least 4. Even she is coming round to the idea "you need what you need" if you are going to function long term.
I had 2 family members who almost certainly had PMR, my maternal grandfather and a great aunt. They did have it for years too but no treatment in the 1950s/60s.
She is a research and clinical rheumatologist in PMR and GCA at Leeds - quite a few members are her patients, she is a trustee of PMRGCAuk and an all round "good egg".
Don't know if she has written much on the heterogeneity of PMR and GCA - most of the contact I have with her is in Zoom meetings! She has written stuff in the news magazines on the PMRGCAuk website
I was diagnosed at Exeter RD&E by a very nice, understanding rheumy, but he retired soon after. The doctors that I 've seen at that dept since have been hell bent on one thing, to get me off pred as soon as possible, and damn the consequences. Athough this drug has thinned my skin a bit, it has not left me with any other long term damage. Even the rheumy who yelled at me had to admit that my body seems to like the drug.
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