Hello, me again,
I was just wondering how many of you are able to keep working whilst juggling steroid levels, tiredness, brain fog, etc.
I am having difficulty balancing working and dealing with daily symptoms, not sure what is the best course of action as I need to work to support myself, but am reading on here that it's important to listen to your body.
Any advice would be gratefully received.
Some do remain in work [either through choice or need], others try initially but find it’s much.
I think like most things PMR/GCA it very individual - it’s depends on what employment is - obviously a strenuous, physical job would be difficult. A very stressful mental one where the decisions you make could affect others raises other issues - your cognitive abilities need to be considered.
It also depends on how your employers can aid you to keep/return to employment. They have to Equality Act rules and regulations, but some are more proactive and supportive than others. Trust you have your LM, HR department, occupational health and union [if you have one] onside. Also worth looking at CAB site for info/advice
citizensadvice.org.uk/work/...
Can you take extended medical leave whilst you get your head around things - or are you already?
Others in your situation will be along… but at the end of the day, it’s your body, your life, your decision… so take your time.
Thank you. I work for a small company with no union/sick pay. However, up till now they have been very good. I will see how things progress.
I wouldn't leave it until you are beyond being able to work. If you are employed in the UK you will qualify for state sick pay - not fabulous but a start. I was self-employed - not a bean.
If push comes to shove and you decide you need to stop work - you might find this post has some useful info -
It is a problem that has only really become an issue in recent years - it is less common in under 60s and the majority of patients are women so by 60 were retired, In recent years the increase in pension age has really brought it into focus.
It very much depends on how severe your symptoms are, what your job is and how accommodating your workplace is - they are legally required to make reasonable accommodations in all sorts of ways. Some employers just don't make it easy and some jobs are difficult to adapt.
I worked - but I was freelance and worked from home. No commute and only had to stagger from the bed to the computer! It was hard though and I found myself re-reading texts repeatedly to be sure I had understood. There was always the fear if I made a serious mistake my clients would not come back. And I wasn't dependent on my income - it was the cherry on the top. But sometimes I needed to meet some tough deadlines and was exhausted by the time I was done.
Others with more physical jobs have other problems - there are actually past threads about it and there MAY be something in the FAQs. not sure but have a look. The Related Posts aren't terribly promising I note so I wonder if that is HU messing about!
You have already received some wonderful advice~! I just wanted to say Welcome..I see you are new. This forum will be a blessing to you...information, support, companionship and motivation...knowing the bad and difficult will become better. So glad you are here...I'd be at sea without these great folks.💞
Thank you for the welcome, I'm already so glad I found you all!
Afraid I have to - am technically retired but do a couple of light 2hr cleaning jobs a week and one light gardening job (basically weeding). If I didn't I could survive financially but wouldn't be able to have outings or look at something in a shop and think 'I'll have that'! Plus it's a bit of mental & social interaction too and not at all stressful! I'd possibly be better off physically if I didn't though. But I make up for it though by doing the bare minimum in my own home!!😂🙄
I just ground to a complete halt, in the end, and had to stop, but I was in a very high pressure work environment and I just couldn't manage the pace any longer. I was almost 63. That was pre diagnosis and I didn't know for another 18 months what was wrong with me. Luckily, I had savings that was intended for some retirement travel and also got a bit of a payout from the company when I left. That's all long gone now. Messed up my retirement plans, but heck, I'm still here. I honestly don't think I would be here now if I hadn't stopped work. What price do you put on a life?
Hi.I was diagnosed with PMR at 51 and a half. I am now 61 so soon to be ten years and still on prednisolone currently at 4/3 mgs.
I was forced to retire on health grounds at just over aged 58.
Work, NHS school nurse, did as much as they could to make work placed adjustments over the years but coupled with worsening asthma and then a severe problem with ear resulting in a diagnosis of Menieres disease I just couldn't do it any longer and had increasing periods of sick leave.
Luckily I had the support of occupational health resulting in me being awarded my pensions at the higher level with some enhancements. If I had to go back to work now I don't think I would last more than a few days. The fatigue is still a major problem due to very low cortisol levels.
My pension is by no means enough to live off by myself but coupled with my husbands retirement and state pensions we manage fairly well and if not I would happily eat soup and beans on toast and downsize not to have to work again.
I had a demanding role and decision making was not safe coupled with brain fog and the increasing issue with my ears causing computer work to be difficult, with words jumping about etc.
It is tricky if you don't get company sick pay but they should provide occupational health support and have to support under the Disabilty Act 2010, I think and PMR definitely comes under that, and make all reasonable adjustments.
I tried all sorts of work patterns, obviously to fit in with service, to enable rest days in between shifts and aids to help support aching shoulders etc but in the end the PMR and the other conditions won.
It took at least two years to accept I was not well enough to work again but now I am making the most of life albeit accommodating my conditions.
I hope you get support. Have a look at any benefits you may be entitles to if you have to stop work.
Health comes first in the end. If you are ill you can't work.
Best wishes for an easier PMR journey.
Thank you, it's really kind if you to reply to me. I am in a bit of a predicament as I'm 62, no private pension and government pension doesn't arrive for nearly 5 years. I live alone, so support myself. I thought about selling my small flat to rent and release some money so I could retire, but realised this wouldn't be enough to live on for long, plus I couldn't face the unpredictability of renting, moving constantly when landlord wants to sell etc. So I will battle on with work at the moment and see what happens.
I’m still working full time, but I’m able to work from home via my computer. I have minimised commuting to save energy/ wear and tear and just hang on in there. All of that said, everyone is different and at a different stage of the condition and it will all rather depend what type of work you do or want to do and how you are at the moment. Look after you – it is important!
Hi.
From October 23 to now ( apart from Dec, Jan & start of Feb 2024) I have been off work with PMR & Pred side effect.
I have a very physical & mentally challenging job, dealing with stressful situations, often working long hours at the drop of a hat, including working when I should be asleep, then asleep when I should be awake!🤪
I had and still have little control over anything in the workplace at the minute.
I came to a complete grinding hault.
I was sent home by my Occ Health unit and went through a massive rollercoaster of issues and I am still off work.
I am just awaiting a consultation with my GP to see if where I am now, is as good as it gets in the short to medium term.
I still have cognitive issues in waves & extreme fatigue that just punches me in the face without notice.
If this IS as good as it gets, for now, then I will be talking again with my Occ Health unit to see if they & my employer will consider reasonable adjustments with my job.
I can't go back to how I was pre being diagnosed, as the excellent folk on here have pointed out, I am now living with a new normal.
If they allow me back in but I can't cope, i'm not sure what I'm going to do?
As I understand it, PMR is not classed permanent, even though we have no idea as individuals if & when it will go away & burn itself out. The chances of getting ill health retirement for PMR is almost nil as to qualify you have to be classed as 'permanently unable to do your job between your current age & state pension retitement age'
So at the age of 54 I am facing significant financial issues if I can't get back in the workplace, despite me wanting to.
Can't work & face financial ruin or go back, struggle & watch my health go further down to toilet. What a choice!
So you have my deep sympathy as does everyone with PMR.🙏
Oh, you are in a difficult situation and have my sympathy (not that it's any help I know)! It's so difficult juggling what you need for your body and mind, along with what you need to survive financially. I hope you get something sorted out soon.
🤗 Thank you
I work 80% as a clerk in a office. 4 days 8,5 hours. In Switzerland it is usual to go to work even with PMR. We do not receive a perscription. I startet with 20 mg Pred now on 10.
I got PMR/GCA almost three years ago and have kept working. I would have retired if I could, but it was and is not an option due to my economic situation.
I have benefitted strongly from being a freelancer and thus being able to plan my work according to the symptoms of the day. BUT there has also been extended periods where I due to a deadline had to keep working despite brainfog, fatique and what have you.
These has been pretty miserable periods of my life. Not just because it was physically hard, but also because of the mental pressure and uncertainty: Will I be able to finish this job in time? How does working with these symptoms influence the quality of my work? Will working cause a flare? Will it prolong or worsen the disease Etc. Etc.
But somehow I have managed until now. I have gotten a little better at coping with my frustration. A little better at planning my work. A little better at saying no. A little better at facing the prospect of having to sell my house. And ALSO the disease has eased up a little bit (knock on wood).
I wish I could present you with a manual for balancing your work with the PMR symptoms. But I can't. At least in my case it has been a case of ongoing process of experimentation with finding the limits of my working capability and this forum has been a huge help and support in this process.
I wish you all the best.
Thank you for taking the time to reply to me.
I can see from the different replies I've had that everyone's situation is different.
Since being on here I have tried to view my situation in a different way. Before I was panicking as it seemed like me against the world. Now I don't feel so much like that, I know that help is out there, and I really have found the advice useful.
Good luck to you too.
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