Going back to work with PMR

[JF27]

My husband is recently diagnosed and on 15mg of prednisolone for a couple of months. Can anyone share how long between diagnosis and their return to work? He’s 57

[DorsetLady PMRGCAuk volunteer]

Really depends on how he is and maybe more importantly what his work is…

Have a look at link for what employees should be doing to help his return to work,and he needs to talk to line management, occupational health, and union rep (if there is one at his workplace) to discuss all options

citizensadvice.org.uk/work/...

There will others along with their experience….but would be good if you could but more info on his bio so we know a bit more about him..

[Kendrew]

Hi JF27,

How long is a piece of string!

Unfortunately, it's impossible to put a timescale on this as we're all individuals and will therefore experience this condition in different ways.

A few people will be able to continue working whilst managing their PMR quite successfully, but for most, there will either be frequent periods of sick leave or an eventual realisation that a return to work is no longer a manageable option.

The ability to work will also of course be determined by the nature of the job being undertaken.

If you take a look at my 'Bio' you'll read all about my own attempts to stay working and this might afford you and your husband a little more clarity on the matter.

The most import thing to remember is that the PMR dictates what you can & can't do and simply trying to 'push through' definitely won't work. If you don't respect the condition then you'll experience consequences that usually result in flares or relapses of the PMR.

I wish your husband all the best though and hope he is indeed able to return to work when he's able.

[PMRpro Ambassador]

As DL says - depends on what he does and how well he responds to the pred. If you tell us a bit more we may be able to say more - is it an office job, manual work, does he have to commute? Is it stressful?

You do realise that 2 months of 15mg is just the start don't you? It is a chronic illness that can be managed well for many with pred - however, stress and heavy physical tasks aren't good bedfellows with PMR. But you are looking at years, not weeks or months.

PMR does count under disability legislation so employers are supposed to make reasonable adjustments

[Koalajane]

I was off for about 3 months after my PMR diagnosis. I returned on a phased return after speaking to someone from Occupational Health

[piglette]

I had worked before I was diagnosed although that was hard and very limited. After diagnosis I was able to carry on pretty well immediately, but it was a sedentary job and I can work from home.

[Bcol]

I think, as already mentioned, that this is or will be a very personal thing for your husband (and you), depending on the demands of his particular job, how he feels and how supportive his colleagues and bosses are at work. Not all firms are as "clued" in to the disability legislation as others.

I had to take early retirement in 2001 because of my OA but I am 100% certain that I couldn't have continued with working (teaching profession) with PMR, certainly not in the early months. Being out of pain, hopefully, and managing to cope at home, again hopefully, is very different to managing the continual pressures and stresses of work.

[whitefishbay]

I used to leave an hour earlier but kept working. Once you are on 15/20 mg pred you start to feel so much better. You have to learn to manage the fatigue. Wishing him well.

[cranberryt]

I never stopped working but we don’t have the same benefits here in the US.

[PMRpro Ambassador in reply to cranberryt]

They aren't easy to get in the UK and are hardly all-encompassing!

[jessiem in reply to PMRpro]

I concur. I had to give up work due to PMR and RA. A nightmare going through the benefits system. Luckily I have a friend who works in CAB and got help.

[PMRpro Ambassador in reply to jessiem]

I worked - and with PMR and no pred. But I was freelance and only had to stagger from bed to computer in the next room! Couldn't have commuted!!! Or done anything that required standing.

[Vanlose]

My combined diagnosis of PMR and Seronegative RA was made just before the first UK Lockdown, and as a consequence I was furloughed by my employer due to my vulnerability status (something I'm still struggling to accept 2.5 years down the line!)...consequently, I retired rather than return to work at the end of the first Lockdown. I was initially told by the Rheumatologist to reduce down from 15mg daily Prednisolone over an approximate 6month period. On my 3rd planned reduction, I became so unwell, I contacted my GP (telephone appts only due to Covid) who advised me to go straight back to 15mg and start reducing at a MUCH slower pace. He also advised me of how much and when to increase if needed. 2 years on, I am on 5mg daily, and Co-codamol and 10mg Amitriptyline for pain management. I did get down to 3.5mg, but couldn't function on that dose. I am not convinced I have/had PMR, and think my pain and fatigue is from the RA. We learn day by day how to manage (or not!) symptoms as best we can. I have cut out alcohol and most sugar/sweets as these definitely trigger flares and symptoms. I've also learnt to live by the 'spoon theory'...and NOT FEEL GUILTY! I am grateful for the good days, when I feel energised and more mobile, and have learnt to accept the need for rest days when I need them. I certainly made the right decision to retire. There is no way I could continue to drive 15miles each way and work full time. I would add I had been working past retirement age, so didn't feel quite as bad for not going back to work. I wish you well

,

[Doodles2013]

I have never stopped working but different for all I guess

[winfong]

Didn't stop working (PMR/GCA/LVV), but took plenty of PTO and have now reduced to a 32-hour schedule. I have a desk job that I can do remotely (computers), but 32 is honestly all I can manage.

[Denbo51]

it shouldn't stop him from working as I worked all way through so long as he can walk,im down to one from 15 ,if stil suffering go upto 20and work down every month by one mg

[PMRpro Ambassador in reply to Denbo51]

It very much depends what your job is and how bad your PMR affects you.

[Denbo51 in reply to PMRpro]

sorry yes it does,im no retierd so far my tapering is working.my doctor told me to take paracetamol if it gets worse which I do and does settle me ,iv had it for 2 year now as iv had it bad good luck

[PMRpro Ambassador in reply to Denbo51]

If paracetamol helps the pain the chances are it isn't pain due to PMR

[MarkWin]

Everyone already mentioned that 'it depends'. I was diagnosed with GCA at 57, and after employer tried to support me 'back to work' for 12 months, we all realised that wasn't going to work and the Occupational Health declared I would not be fully fit before 60 so was 'released' at nearly 59. Several times I have tried to find work full or even part time, but my own body will not cope with this, and CV seems unacceptable too. Fortunate to have small pension, but this is rapidly becoming insufficient! State Pension also got too many holes in it to help when I eventually receive it (worth checking the HMRC record). Am still on Pred and MTX some 5 1/2 years later with erratic sleep, constant lethargy, headaches and pains generally - all massively frustrating, but as former work colleague recently said there's nothing as important as your health and you do now have to live a slower life in retirement. It does take some adjustment... I wish you and family well.

[PMRpro Ambassador in reply to MarkWin]

Were you not registered as unemployed when the moths got at your HMRC record? Or were you abroad?

[MarkWin in reply to PMRpro]

Some in GB, some in Germany, some in NI. Nothing 'extraordinary'. Army have stated yes I was in Regular Service but neither Army nor HMRC will recognise this.

[DorsetLady PMRGCAuk volunteer in reply to MarkWin]

Think you need to look into your State Pension a bit closer (apologies if you have already) as you can top up your NI contributions if you want to/are able to.

My late hubby did after he was medically retired in his 50s - so he could get his full state pension.

see this -gov.uk/voluntary-national-i...

[MarkWin]

Somewhat unbelievably, there are 8 (eight) years missing in the middle of my Forces Regular Service that neither Army nor HMRC are prepared to change and they are all pre-2006 so cannot back fund them - even if I had the £800 or so a year to do so. I don't have my payslips from so long ago, and there appears to be nothing I can do about it. I also stopped working when I was 59, so only have 28 years' service that count. Believe you me, I have tried!!

[DorsetLady PMRGCAuk volunteer in reply to MarkWin]

My late hubby was also in HMF -and they must have records somewhere - and you most certainly would have contributed-albeit not shown as NI on payslips. Same for MOD civilian (me being one-or was!).

Am bit busy at moment -but will have a look at my late hubby’s records -and if I find anything useful will message you.

[MarkWin in reply to DorsetLady]

Thank you. Am exasperated with them all as I have some 'excellent' emails and letters that basically say 'bad luck mate'!!!