Have found a distinct lack of energy which doesn't seem to improve as the days go by, not even that recently experienced little bump of energy around teatime. So far no actual what I'd call PMR symptoms, but definitely feeling extremely creaky. Not sure how long this phase might last. I've been on pred for about three years since a quite promising morning cortisol test so don't know if adrenals have decided to pack it in, at least for now.
I know it's too early to claim success or admit defeat, but just wondering if anyone else out there has experienced similar after years on pred (in my case since June 2015).
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HeronNS
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Hello, Heron. I reached zero pred two weeks ago after six years. I felt slightly but uncomfortably nauseous for around a week with little energy and no appetite. I still have no ‘get up and go’ and am not fighting it. For the past few days my lower back has been extremely ‘ouchy’ but paracetamol erases a lot of the pain which is not PMR pain-that’s a different kettle of fish. I will persevere 🙂.
I am still on 10mg leflunomide daily for aortitis.
Adrenals won’t have packed in completely- or you’d definitely know! But they are still dithering by the sounds of it… and can take up to 12 months [occasionally longer] to be back to 100% functioning.
So just make sure you always have some Pred on you in case you get a severe case of them wobbling. ..and keep your medical bracelet or whatever on your person.
3.5 years on Pred and it took 18 months to feel normal. It felt like a full picture being built up with dots, with the image slowly evolving and suddenly its there and you didn’t notice at what point it arrived. The first 6 months was the hardest but I did have long Covid. I was on 1mg-0mg for a year though before stopping and was napping in the afternoons and could run out of steam on any given day. I had good days too. I could cope with short and sharp demands but anything prolonged like a day of adventure or stress was too much. I had less tolerant muscles and aches and pains for 18 months. Yes I had had Covid a few times but I had that feebleness during the 0-1year. I stopped in Aug 2020 (6 months in from Covid 1) and really turned a corner in April 2023. I still never go far from home without Pred in my bag having had a few crises out of nowhere but with hindsight, the ingredients were there. Bottom line, it can be a long and unpredictable old path. The up side is, you could turn the corner a while after it seems like this is it.
I think the trouble is with this condition, we are subtly programmed to think zero Pred is the end of the process. I see it like having one’s leg plaster removed. You don’t walk off like new; it’s when the physio starts.
You have explained this so well! A lifelong friend is coming to the UK from NZ in a couple of months to stay with her sister 90+ minutes drive from me and while not wanting to appear pessimistic, but remembering past occasions where whole days were involved, I am concerned about what will be planned. I will be consulted for sure but I don’t want to be a killjoy or that person who makes excuses for not wanting to this or that. The long lunch will be great but London galleries, museums, exhibitions, old haunts have been the norm in the past. I’ve thought of asking them (3) to come to us for us for a visit but thinking through what that will involve the idea was soon dismissed.
What may make things difficult is the fact that my friend’s father had PMR which lasted “only a year!” I really don’t want to get out the book of, “What it is like for Many”? 🥹
Ah yes, permanently feeling like the kill joy to those who don’t get it 😞.Par for the course, sadly. Perhaps request a smaller itinerary? You need to stick to your guns I think. As for the 1 year wonder, I can’t think of any disease where it is exactly the same for every person. When people wheel out these anecdotes, it seems to be only for their benefit, to feel better or air their frustration.
I remember someone telling us about friends where the husband had had PMR. In his version he was hardly affected and it was gone in a year. In the wife's version, he was an utter pain and it lasted the best part of 4 years ...
He sounds like a legend in his own mind! I expect he carried on with all his previous activities-5 mile runs, 50 lengths of the pool, lifting his own body weight 😂😂😂. I feel sorry for the wife!
I'm sorry, but the picture which popped into my head at this suggestion made me laugh! Can't you just see it, all us oldsters being issued speeding tickets in the museum....🤡
Well done you. I sincerely hope you feel more like yourself soon Heron. It's been a long haul. Thank you for this post and bringing to reality that reaching zero pred is merely the end of a chapter. 🌹
❤️Thanks all. Today my hands hurt when playing the piano; in the past they've felt better. My "other" hip hurts, not the one miraculously cured with a bursitis exercise many moons ago. A weeklong headache went away yesterday but I don't know if it's because I ate some salt the night before or the weather improved. And I'm being investigated for a tremor in my right hand, don't know whether to hope it's "only" arthritis in the cervical spine (which can, I understand, eventually become a condition worthy of MAID) or a more troubling disease. Kind of hope the weakening heart carries me off before any of the other possibilities fully materialise! Basically I'm a mess, and yet still so much better off than many. Hubby is losing his eyesight (which he can't do anything about, already being treated by two specialists) and his hearing (which he could do something about only he won't take himself off to the audiologist around the corner). His lessening ability to help has made things a bit harder for me - he used to vacuum, but now he can't see well enough. So the two of us are a couple of old crocks, not particularly good at propping each other up!
How wonderful she's been part of your life for so long, and still enjoying life.
You know, I read years ago that our parents' generation would be the last to see improvements in life expectancy. I think advances in medical treatments have helped, but the thing is, it's our generation that was first exposed to modified nerve gas (origins of agricultural pesticides) and nuclear fallout. There were some things which our parents were also exposed to, notably tobacco and pollution from fuels, lead in paint, asbestos in building materials, as well as diseases now better controlled (although for how long, one wonders today), but during our time nature has become more and more contaminated, and everyone alive today is exposed to more and more carcinogens, and less and less ability to escape these insults to our physical wellbeing.
She takes no tablets, doesn't believe in blood pressure being taken, and the only jabs were Covid, and cholera when we lived in India. Think the pollutants must have preserved her as planes used to dump DDT over the yard on a regular basis!Either that or no-one on the other side is brave enough to take her on!
DDT was first discovered to be an effective insecticide in 1939. The first atmospheric nuclear testing in the 1940s, which continued for years. I remember when they discovered there was strontium 90 in the milk we were drinking, must have been the late 50s, even as children we were talking about it. You know how you can pull up a stem of grass and chew on the tender end? We were warned not to do that anymore!
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