Hi everyone, it took me 2 years to get off prednisolone for PMR and it has been 10 months since I last took any. I try to keep fit by working out at home, dog walking and swimming. However during lockdown I walked 3-4 miles a day (while taking prednisolone) which was really enjoyable. Now if I walk any further than a couple of miles I get really tired, my legs ache and my knees hurt. Sometimes I need a proper rest afterwards to recover. I am 57, slim and can swim 50 lengths. Is this a result of PMR or am I merely getting old!!!
I certainly don't have the energy I had 2 years ago-I was wonder woman on steroids!!
Thoughts please 😀
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selkie2019
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Hello, I am also a member of the 50’s club who aren’t like what we were sports wise. My first question would be though, even though you’ve been off Pred, how have your symptoms been, however slight?
Being full of vim on Pred doesn’t count as it can give a false sense of well being and energy that isn’t real. 10 months after stopping my Pred, I still wasn’t constitutionally right and that took 18 months. I don’t know what your experience of returning adrenal function was like, but it can still be sub-optimal at this stage especially if you’ve decided you’re cured and have dived back into life as normal. Stopping Pred doesn’t necessarily signal return to throwing yourself into getting better as if you’ve had a bad virus. You could well be over doing the physical exercise eg working out and your ligaments and muscles that still haven’t recovered from the PMR and Pred. Saying that, I would also think about seeing a doctor and don’t be fobbed off that 57 is old and you should expect it. You could still have some autoimmune activity bubbling away or be doing more than your body is ready for or something else.
Thank you, I do miss feeling so well on the pred but it sounds as though I need to give things longer to settle down. Hopefully I will return to my pre PMR levels of energy. I will call my surgery to arrange an appointment. Thanks for your input.
Hi Selkie2019, your post resonated with me. I too have been off pred for 10 months having started Oct 2018. Like you have been fit and active though a little older at 61. Think the fatigue etc you mention is your body needing the time to fully recover..... I'm 'testing' mine at the moment as we're in the USA on holiday and I'm so having the greatest time despite the busy days and sleep patterns disrupted. But I feel like the duracell bunny! Am thinking my adrenals must be ok so hang on in there!
Thank you! So good to know I'm not the only one. Hopefully this will improve with time. I make sure to rest when I need to and will try not to get so frustrated with myself. Enjoy your holiday x
PMR is a nightmare. I am in my 4th year of recovering from this thing apparently can take 5yrs. I am the same I use to walk for at least an hour a day but now happy with 30 minutes because I get tired. So now I also do yoga , pilates and light weight programme at a gym and it helps. I do sleep more than I use to but I just go with it. I take B12 and Turmeric to help with the lack of energy and aches.
You are doing well just don't be to hard on yourself as u r not alone.
Not just 5 years - I've had it for 18 years and it isn't gone yet. There are others here who are over 10 years. 5 years is about average and the very long cases are unusual to be fair.
Morning, still lots to learn about post PMR. I am going to swop out one of my workouts so that I don't do a straight 4 days. It is very reassuring to know that other people are experiencing the same thing. X
I’ve had PMR for about 6 years the first 5 untreated and ignored by my doctors no matter what I said , so when my new doctor agreed with me about PMR and put me on pred I was absolutely amazed at my quality of health in a matter of days . It was like I had a new life . I also have Lipodema so it’s a double whammy. Over the last 16 months we reduced the pred with the help of a rheumatologist guiding the process and I still felt really good until I got to 5 Mg pred and he had added for several months metheltrexate. My self esteem up to then was high and yes I too could run about like a hairy chook. Felt great. Dropping the dose to 5 Mg after about 4 weeks posed new symptoms and the pain returned. But unfortunately I got COVID in December 22 and an infection which was treated with antibiotics too and the antiviral meds as well. And yes I’m vaccinated x 4 doses in the left arm ( ? Aches like mad sometimes, ) . Anyway at end of January 23 I took myself of both the pred and metheltrexate. And found myself in a remission state. So I was happy but as time went on the drug wore out of my system and I woke up about 4 weeks ago with massively swollen feet and lower legs and unable to move about and exhausted . I thought gosh my heart is up the creek but no it’s a relapse of PMR from the withdrawal of pred . It bounces that way evidently .
So I’m back on pred was started at 25 Mg down to 14 Mg right now . Will keep reducing slowly to 7 Mg then go super slow am dev have metheltrexate back at that point. I have super energy once more and am on Keto which my cardiologist has agreed too. My pain is settling my lower legs and feet have gone back to their thinner self and really I don’t understand this nor does my cardiologist and I’m yet to see the rheumatologist again soon. So what k relate to you is I think the Pred controls swelling and inflammation in PMR and it does come and go but I have learnt a valuable lesson and that is pred is going to be in my life now because I do not need that inflammation, pain and listlessness to come back and destroy my zest fur living which I have been without for so many years before. This is just a minority of my health issues that I have each day . And may not resemble your health at all . Best of luck . We are all different but have similar stories about problems which affect our lives so much .
Hi, gosh you have had a tough time of it! Thank you for sharing your story. PMR affects us all in different ways. I will try not to push myself so hard and give myself more time. Determined to make the best of every day. All the best x
hi No I weaned right down to 1 Mg over a period of about 10 days . I had no idea about the rebound affect and am learn daily of what not to do now. I am going to take this wean slower than before and take months to do it . When my legs swelled along with my feet this was like a nightmare and so painful … I wear socks and stretch shoes most days to help with support right now . And i I will resort to compression socks if I have too for 1/2 day in morning if it’s hurting at the time . Am happy right now.
Ask anything ? all good , I feel for you as it’s really hard not to get upset with a rebound of PMG .
Weaning from 5mg to 1mg over 10 days after being on pred for months, never mind years, is still not enough. At 5mg your adrenal glands are not working at all, the 5mg of pred is enough to provide the body with all the corticosteroid it must have to keep you functioning and alive. It is said to take at least as many months as you have been years on pred for the adrenal function to return - and for many it takes longer, especially as we age.
When you are on pred long term, a condition called secondary adrenal insufficiency develops where normal adrenal function just doesn't exist or is far below what you need. The result can be you go into what is called an adrenal crisis which can make you extremely unwell requiring hospital treatment and even become life-threatening. By stopping your pred so quickly, you were at very real risk of that.
PMR is only managed by the pred, it has cured nothing, only time will result in the underlying cause of PMR going into remission and allow you to get off pred entirely. Even 1mg can be enough to keep the inflammation under control. The PMR hasn't rebounded - it had never gone away and it was creating inflammation every day. When you stopped pred, the dripping tap of inflammation continued and the bucket filled up without pred scooping it out steadily until it got to the level that caused symptoms. You opened yourself up to another double whammy, one of them very dangerous,
Thankyou for your response that’s interesting information no I wasn’t on Pred for years , I had PMR for approx 6 years and Pred was commenced Christmas 15 months ago approx with a weaning schedule by the GP. It’s all been through their guidance, sorry I should have said that. It’s just now that I have put myself back on it and am going to take months to get back down to 5 Mg. What you say about the dripping tap makes sense for the first time ever. COVID made me really unwell it did cause a storm in a way . They upped the dose then got me to reduce it again my body was probably in shock from that as you say it makes sense now . Thankyou .
Even after a year on pred above 5mg, you needed to do that last taper much more slowly for safety - I hope the GP didn't sanction that speed for a long term patient - longterm here means over 2 months, You were very lucky not to be seriously ill.
Prof Mackie, the PMR specialist in Leeds, loves the dripping tap analogy and uses it. I think a lot of doctors just don't realise how it all works which makes it much harder for their patients.
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