I’m recently diagnosed with PMR and 5 weeks into steroid treatment. I can see May posts around the erratic nature of symptoms, physical and mental well being.
I’ve been off work for 5 weeks and keen to get back. I don’t want to rush things and not be able to perform my job well.
Does anyone have advice on how to approach this?
Now you have written this, there are related posts…
.. but you do need to discuss fully with your employer, including HR, occupational therapy and union rep, if you have one to make sure they help you as much as possible as they can to accommodate your illness.
Good luck.
Like most people I want to get back to normal. I don’t want rush, as I’m concerned that I’m not sure what I’m going to feel like each day
Really depends on how stressful and/or strenuous your work is…
There are some on here who have returned to work -some successfully others not so and have taken early retirement. There is no easy answer unfortunately - as you say it’s very much a day to day thing.
You can only try and see how it goes -but with as much help as you can get…
I went back to work after about 2 months from diagnosis. I had a phone interview with an Occupational Health Adviser before returning to work who insisted on a phased return to work and it was also noted that there was a possibility that I might have to have some time off due to the illness. I found it very useful and also the interview just before my return with the Manager and Human Resources Manager.
Good luck with your return to work
Very much depends on what your job is. I worked all through 5 years of PMR and no pred as well as subsequently on pred. But I was self-employed, working from home sitting at a computer translating - no commute, no racing around or standing, could choose my own hours so went to the gym every morning to an aquafit class so I could move! The only problem I had really was concentration at times but I wasn't making life-changing decisions either.
I have a demanding job, which I totally enjoy. I’m worried about feeling nauseous, tired and not being able to focus at important times. I’m still on the first round of meds and wondering if I should wait till I’m on a tapering plan before committing to a work timetable
Definitely wait. I have GCA so started on much higher pred doses. Eight years retired and GCA hit me over a year ago, cannot possibly imagine working my in my previous demanding job. Hang fire, see how things go and as has been said many times here - pace yourself, listen to your body.
I would wait a bit in that case - you need to learn how your body deals with PMR and also with pred. And as I say, very much depends on how physical your job is, Mentally mine was demanding - physically less so except when a company decided it was up to me to catch up their delays for a deadline and it meant VERY long days. However, once the job was finished I could pull the blinds down and hibernate without a boss complaining ...
I worked full time at a demanding job I loved. Director of a cardiac surgical unit. 6 years into PMR I was diagnosed with GCA which in hindsight I think partially brought on by not reducing my stress load and slowing down. Fast forward, now am retired and have an exercise and diet routine that works very well for me. I realize now what a difference it can make.
I’ve never learned when to rest properly, perhaps something I need to think about more
Certainly do….
Diagnosed with PMR Jan. 2022. I was working from home, but due to the excrutiating pain from the Aug. to Dec. prior, I was on partial hours. In Jan. 22 and on 20 mg of Pred was able to return to partial hours Feb. 14th. I was gradually able to build up the hours until a GCA scare in Jan. 2023. Put on 60 mg Pred, and was reducing. Mood swings and inability to concentrate necessitated going off work again and I've been off ever since. The company I worked for does not have long term benefits. Was on unemployment insurance sickness bens which exhausted. Now on regular benefits which exhaust in January 2024. You are expected to be able and looking for work. When I tried to return to the current employer they said "we are not hiring". They force you to quit when you have a long-term illness. You lose your Blue Cross benefits at the time you need it most. Then supposedly they will rehire you when you are "fit".
Talk with your HR to ensure all your possible scenarios are covered. PMR is an individual and unpredictable journey. I always say "whatever you can do, do it". At this point, many months later, I wish I could return.
As you are a newbie to all this as I was 6 years ago, there's a lot to adjust to. Tiredness may not be an issue if you're on 15mg and you may even feel a bit hyper. Once the pain and stiffness is under control as I hope it is, please don't assume you are now cured and carry on the way you used to. With experience you will work out how PMR affects you, but that takes time. It is important for you, your friends and family and your employer to know (even if they never fully understand), that you have a serious illness for which there is no cure. I know that sounds dramatic but all the Pred does is manage the symptoms. On the outside we all look 100% and it is hard for those around us to understand how we are feeling inside. I wish I had a pound for everytime someone told me "you've only got PMR. I've got something far worse than that" referring to colitis, diabets etc. Good luck and ask us anything. Someone will have an answer.
If someone said that to me I might not be responsible for my response ...
Thanks for the thoughts. My head is in a different place each day, some good, some not so. Although my pain is virtually gone and I’m lucky enough to be quite mobile, I’m now in what’s next mode. I’m many years from being able to retire and that ways on you
I have worked straight through. The biggest challenge for me was extreme fatigue on some days. I am lucky enough to set my own hours though so I can stop and take a nap on my bad days. I still have bad fatigue days 4 years in and down to 1.5mg. If your job can allow flexibility in your hours, that will definitely make it more doable.
I worked for years with flares of PMR symptoms undiagnosed and I eventually ground to a complete halt, aged 62. I got a tentative diagnosis of PMR initially, but every time I see someone it is, "probably PMR, but we aren't sure", though I was put on pred and had the usual miraculous response. Whatever is wrong with me (and I don't care much what they want to call it), I will never be able to work again. The fatigue would make that impossible. In any case, I was totally burned out in the end and just over 2 years on, I am still recovering. If you do go back, make sure that your stress levels are managed, or you could end up like me. I believe that is how I ended up in this mess to start with, from years of constant and unrelenting stress.
Thanks Gimme, your comments help.
I’ve got a feeling that stress @ work hasn’t helped this time. I’ve always been resilient and able to bounce back quickly. Currently this feels different and I don’t have the internal energy which has driven me for so long. I’m worried because this isn’t me!
No, it isn't you, and your illness doesn't define you. I was the same and didn't feel like me any more, and after two and a half years of not working, I am just starting to get my drive back and my interest in life. Mind you, only the last couple of weeks, have I started to feel a little bit like my old self as the fatigue has been a little in abatement, but I still need a lot of rest. Patients with PMR often focus on the pain and stiffness of the illness, but the systemic effects can be much more incapacitating. PMR is only a collection of symptoms, but there is underlying inflammation due to the autoimmune activity and that affects the whole body. You have to make allowances for that. It will mean that you need more rest than usual and if you do overdo it, it can set you back, and recovery of both the muscles and general tiredness can take much longer. You need to make yourself the absolute priority and take good care of yourself. Eat a good diet, get enough rest and as much gentle exercise as you can manage without overdoing it. The pool has become my best friend when I have enough energy to get there.
I’m worried because this isn’t me!
We all go through that stage at the beginning -every aspect of your life is turned on its head…. and it’s probably even more difficult for those still working.
It is very early days -and it does take time to get your head around everything -but you will, and things will improve in time. At the moment you are overwhelmed -and there’s no shame in that, it’s perfectly normal - but you will get your life back (albeit slight differently for while) -in a few months you will look back and see how you have progressed.
If haven’t seen this -maybe have a read through -it gives a (hopefully) realistic view of what’s ahead.
I can’t comment on working while having PMR as my symptoms emerged 18 days after I took early retirement (age 55). I was so mad along with feeling a range of other emotions in the early days.
Eventually I focused on what I could control (what I ate, if/when/how I was active, when I rested, who I disclosed my illness to along with who I chose to get support from).
Acceptance of my condition along with the fact I can’t control some aspects of it, was key. I couldn't change the past (years of a stressful job), or how active my disease was, or if/when it would go into remission. As a “planner” who liked control and the certainty that came along with it, adjusting to daily uncertainty was a challenge. This was amplified during COVID.
So the “what’s next” phase you identify may be answered with “you will have to wait and see….and then adjust and respond” (as uncomfortable as that may sound). It will get easier as you learn to listen to your body. I’m glad you are getting relief from the physical symptoms…that in and of itself, is worth celebrating. Remember to be patient with yourself as you are transitioning to your “new normal”.
All the best with your plans to return to work. Others have made some practical suggestions about how best to move forward.
Going back to exercise
Back to 13mg 
Still not well enough to go back to work
Update to "Back at 10mg what to do now?"
