I'm a healthy active 58yr old nurse and I work in a GP practice full time.
I have had a very stressful few years. My eldest daughter has ulcerative colitis and ended up in intensive care following an emergency resection of her bowel and has ended up with a permanent ileostomy. She is now well and healthy. Then covid hit and that has been very frightening and scary and incredibly hard work.
For the last 2 months I have felt exhausted with an aching left thigh. a sore right arm and painful right index knuckle. I walk 2 miles every morning before work and thought I'd slipped on the muddy fields, hence the sore thigh. I read every night holding my kindle and I'm right handed so that explained my sore knuckle. I carried some logs into the wood burner and that is why my right arm hurt. Then I began to feel really unwell but wasn't sure why, I phoned my GP who arranged blood tests. While waiting for my results over the weekend I went into some sort of crisis and couldn't lift the kettle and seemed to hurt all over.
I spoke to my GP on the Monday and he told me all bloods normal except CRP raised to 36. He diagnosed PMR and started 20mg pred. I argued with him and said I was too young and definitely didn't want to start steroids! He convinced me to do a trial. After 5 days I had no symptoms. I was signed off work and told to rest. The pred gives me horrible side effects. I get a headache all the time, some days can be easier than others, I feel shaky and agitated, sleeping is almost impossible. Appetite varies.
After a week the pred was reduced to 15mg and the symptoms returned. My GP wanted to put me back up to 20mg but we compromised and I went up to 17.5mg for 3 weeks. For most of the time PMR symptoms have been either very slight or non-existent. Tiredness has improved hugely even though sleep is poor.
Next week I'm due to drop to 15mg.
I took 10days off walking the dogs but i'm now back to walking at least 2 miles every day, 3 days ago I slipped in the mud and really jarred myself as I fell. This seems to have stirred up my PMR symptoms.
I have a few questions:
1. Having read lots of your posts should I have a dexa scan?
2. Can my fall stir up PMR symptoms, I would've expected to feel a bit sore anyway?
3. I know my immune system is compromised but I'm desperate to get back to work, I see patients face to face and I feel very guilty being off and I'm needed to start delivering the covid vaccines real soon. What is considered a safe dose of pred for me to start back to work?
This is a really long post and for that I apologise and I'm trying not to feel sorry for myself but I want to get back to normal and be in control of my condition.
I would appreciate any help and advice
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2) yes, there is even a paper in the medical literature about a fall being enough to trigger a flare
3) Hum. Now there is a question. I imagine you need to talk to occy health about that. My daughter is training as ACP but was off shielding in the first lockdown and then had surgery. She was back at work - and occasionally meeting what turned out to be Covid patients on the assessment unit. She got her new "vulnerable letter" but told them she wanted to carry on working. They agreed but said they might HAVE to send her home. Which is what has happened - she's off until the 2nd now as her vulnerable letter was the highest level. Her big sister (nurse) has worked all the way through despite being asthmatic - this time round she is no longer considered vulnerable and is actually working on Covid ICU. Neither are on long term steroids though they have had enough in their time! I suspect it is less the steroids per se as the rest of the medical history to go with them - after all, they are being used in management of Covid! I suppose it also depends how they set up the vaccination programme - I could envisage the sort of set-up of the sort they used here last weekend for a mass testing whereby you didn't spend more than a few minutes with each contact which minimises the risk anyway. Is the UK that organised I ask myself!
Thank you Ambassador. I will ask my GP for a referral for Dexa scan. Do you have the link for the paper about a fall and PMR?I did speak to my occy health and they just read from the Gov.uk website which was not very helpful.......
Oh for goodness sake - that's a bit like the letter that arrived today telling me I needed to register for residency and get an Italian driving licence! If you live here for more than 6 months you are supposed to do that - so I'd have been rather illegal by now!
In that case - discuss it with the GP maybe? Are they seeing patients f2f? Very few seem to be doing so - leaving it to the nurses But to be honest - I don't think anyone really knows what is safe and what isn't. If it is any consolation, I don't find being on longterm pred (11+ years) has made me any more liable to catching things at all. If anything, I get fewer colds. And everyone is susceptible to Covid whether they are on medication or not.
It is a real shocker when an autoimmune condition hits, there’s never a good time. There are many of us in our 50’s, working etc etc. and suddenly we’re told we have this life changing event. There is no doubt it is life changing and that is usually the hardest thing to accept but accept you must. Battling on will at best make life grim and at worst make you sicker. This vasculitis is ‘fed’ by stress, trauma (yes a fall) and unrelenting over work. Quite often this is the fist time people find that looking after themselves when it is inconvenient to do so is essential, not an option. I was a part time practice nurse and cancer help centre manager when GCA got me aged 54 in 2017. I stopped working because I could not in any conscience say I was functioning reliably and therefore could not guarantee my patients’ safety. This was the hardest thing, not least because of the over developed professional guilt gland. Our prime driver, being needed, suddenly has to be shut down.
The Pred is not a fix, it is just a safety net to stop the inflammation causing havoc while your panicked immune system calms down which is years but not all at 20mg I hasten to add. Ideally you need to be 4-6 weeks at the initial dose that deals with your symptoms. You need some proper sick leave. Being on too low a dose at any point may cause a flare and the need to go back up again. Beware the effect of Pred making you feel you are a lot better than you are and the energy you’ve got isn’t totally real.
Yes, do ask for a DEXA scan for a baseline and to see if you need bone meds and do get a vitamin D level checked. With a low level your bones won’t be happy no matter what you throw at the problem.
Re the fall, if it has stirred up the PMR (that will not have gone away yet), it won’t improve with on same timeline as a non-PMR niggles post fall, without adequate Pred. The side effects can be rubbish but it won’t be forever, but sorry to say you must act like a ill person because you are one and give yourself maximum TLC so you can get better.
Yes, that's what we all want, but you're most likely going to have to adjust to a new normal.
My first suggestion is to find somewhere else for your walks that minimizes the possibility of trips, slips and falls. Even minor PMR pain and stiffness changes your gait and the way you hold your body - and therefore your balance. PMR takes its toll on muscles and tendons and ligaments, as does pred. The last thing you want to deal with is an injury like a broken or fractured bone, or a torn ligament or tendon. And that's without taking into consideration that both PMR and pred will slow recovery. Find someplace where footing is more reliable, even if it means you have to do laps around the neighborhood instead of the more pleasant walk in the woods or through the fields.
Second, scale back on unnecessary and/or difficult tasks. You need to save energy for everyday living, and build in frequent rest periods, breaks and naps. Repetitive motion, heavy lifting and long stints of standing are not our friends. Ask family and friends for help with things like hauling and stowing groceries, stripping and making the beds, scrubbing the tub and floors, washing windows, raking leaves...you get the idea. If you insist on doing any of these things yourself, or doing more than a few minutes of work followed by a long restful break, you'll be paying for that effort in days to come.
Most of us can attest to having tried the old normal, just to be faced with higher pred doses, flares and injuries. Be sensible. Accept that you have a long term chronic condition, and that you need to cater to it so you can do the things you enjoy. Pull back, move forward with more activity when you feel rested but only in small increments, and learn to read the signals your body sends you. It will certainly lead to a less difficult course of the condition, and may even lead to a shorter term.
Hi there. I can't add to all the excellent advice you've been given here.....much of which I've been offered and needed myself over the past 18mths since my own PMR diagnosis. But one thing resonated with me; "The pred gives me horrible side effects". I too have suffered from unpleasant side effects.... Headaches (particularly after tapers, when I've had to be on 10mg or above) Shakiness (and dithery legs sometimes) Weakness. Extreme fatigue. Total inability to sleep or return to sleep. ...to mention but a few. The reassuring thing is, that although these do seem to be a 'constant' with certain doses I take, they do disappear or improve on lower doses. I managed to get down to 2.5mg and felt remarkably improved....went back to my job in a nursery class. Made it for 7wks and then had a flare which 6wks on I'm still trying to get under control. I'm back up to 12mg and experiencing a return of some of side effects. At the moment, I'm staying at home as school is considered (like hospitals) to NOT be a particularly covid safe environment and my Head doesn't want me in as GP and rheumy both advised that I'd now be immunocompromised again. Like PMRPro indicated....I'm not sure just how much more susceptible I'd be. (I've not had one cold, sore throat, or infection of any kind since being on the pred!) I was going to go in anyway until it was pointed out that their advice is on my medical records and if I did go in then the schools insurance would be void. As it turns out the higher doses have caused a return of some of some side effects and made me feel unwell again, so probably everything is as it should be right now!
It can be a very scary experience as you can feel really rubbish at times, and sometimes it's so bewildering trying to figure out what is a 'side effect', what's the 'condition' and what's something 'new'!
I wish you all the best.....you'll be well supported, and receive the most accurate and informed advice here, so don't feel you're alone.
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