Do you have Polymyalgia Rheumatica or Giant Cell Arteritis? Are you still working?

[Polywotsit]

Doctors tend to think of PMR and GCA as diseases of later life, but people in their 50s get these conditions too. For many, there is a need to carry on working in spite of having a long-term condition. What kind of work do you do, and how have you had to adjust your working life to cope with PMR and/or GCA?

[spotshouse]

I do work as a librarian and have for the last 12 years. The only real concession to PMR I do as far as my work is that I get up in the morning at least 3 hours before I need to go in. By that time, I am starting to move around OK and can face the day. If I'm still having a particularly bad morning, I will take a pain pill.

[Nursey30 in reply to spotshouse]

I also do this.this.I work as a nurse,part time fortunately, and need to get up about 2 hours before I leave the house in order for my Prednisolone and pain killers to kick in.in.Then I can move more easily. If I can work a 6hour shift ,its great but now they want us to work 12 hour shifts.Think I'm going to have to pack in.Shame cos I l love my job.I dont want to do desk work,love the interaction with my patients ,and HR are useless.

[Polywotsit PMRGCAuk team member]

Thanks - what do you use for pain relief? We are usually told that paracetemol is best, but lots of people don't want to take it. I found that if I took a couple when I got up, it would help me through that first part of the day and then sometimes I could manage without any more for the rest of the day.

[Hidden]

I am newly retired, but I was working prior to the recent diagnosis and had to stop because of ill health and it was a most difficult time. I wore a neck brace which I bought from the chemist and also because I had been misdiagnosed with RSI I wore a wrist support. Painkillers were Co-Codomol and also Cuprofen. I was unable to carry anything up and down stairs and when doing the post concessions had to be made to accommodate my physical lack of strength. Retrospectively it would have been good to have an earlier diagnosis as I believe my work life could have continued.

[Judi]

Hi Kate,

I was 57 and working full time when I started suffering from PMR.

I was put on to steroids straight away. I had a couple of days off and then returned to work and continued working until my job finished December 2008 and I was made redundant. (I was 16 months off of retirement when my job finished)

I worked as a secretary and because the contract was at it's end I needed to box up the majority of files to be archived (plus the usual scretarial jobs) and at times I did find this difficult. When full boxes needed moving I got one of the men to move them.

When I was first diagnosed with PMR (already having rheumatoid arthritis I was already taking diclofenac and other meds. treating the RA) from what I can remember the only pain killers I took or was advised to take were paracetamol

When I was diagnosed with PMR I printed out a patient information sheet which I then gave to my boss, like me he had not heard of it either. I think it helped him to understand that sometimes I may need help (plus as far as it is/was known it wasn't contageous !). I had worked with him for a number of years so he was very understanding.

As I say my job finished December 2008 so at the end of January 2009 I had bi-lateral carpal tunnel surgery. I had to take things easier because of the surgery to my wrists and I think the PMR also benefited from taking it easy at that time.

Judi

[HelenJC]

Hi Kate

I realise this is a late reply to your question, but I am recently diagnosed with PMR and have only just found this question.

I am 64, but for financial reasons am still working. Fortunately it is only part-time, and primarily based at home, so that helps. I am actually doing 3 part time jobs, and am finding it extremely difficult to cope. I am just SO TIRED! By-and-large the pain in under control - or at least, the severe morning pain is - that was a complete nightmare. But I do have usual age-related degeneration of the spine hips etc, so having started on 30mg pred (when I had no pain at all) I am down to 20mg and am quite achey. I think I may have come down a bit quick so will discuss it with the doctor and probably slow it down a bit.

Everything is such an effort. All I have read on the blogs say take it easy and listen to your body, but if I did that I don't think I would move off my bum all day! So I am trying to keep on top of my work, walk the dog twice a day, and follow an exercise programme prescribed by the physio to strengthen my core so the underlying back problems don't get worse - I really don't want to have to have hip/knee replacements further down the line.

I am also taking AA as I have a family history of oestoporisis, which is another reason to try and keep exercising.

But at least being self employed I have only myself to answer to ... but of course, going on the sick is not an option!!

Helen

[HelenJC]

Hi again - just thought I didn't actually answer your question as to what I do and how I have had to adjust! I am the administrator for a local Law Society, a Parish Clerk and undertaking a short term contract setting up some IT systems for a company my husband works for - which involves travelling 60 miles to the office and back again. My husband drives, as I am not sure how happy I would be if I had to.

So most of my work involves usual secretarial work, with some event administration and minuting meetings, stuffing envelopes etc.

The adjustments I have to do are mainly around how long I can concentrate for and sit at my desk for ...

Helen

[enen]

I have PMR and have been signed off work for 10 weeks. Due to return shortly but I am terrified as job involves stretching and is physical. I am taking 20mgs of Pred each day. Will hopefully reduce soon. I am thinking of asking GP if she will give me more time off. Is this a reasonable request as I really don't feel I can Cole with 12 hour shift work.

[whitleybayfc in reply to enen]

Hi Elstep,i was off work for a year ,then medically retired. Ive gca pmr ,type1 diabetic ,addisons disease and sticky blood hughes syndrome .Check if your work has an occupational health officer. If you can not get back to your job then your manager should refer you to occ health .My case was dealt with fairly and it was decided I couldn't do my physical job. I think Pmr may be covered by disability equality act......you'd need to check that with gp...if so it is your employers duty to make reasonable adjustments so you can stay in work .If they don't they are breaking the law.I was 51 when I was retired on ill health, hopefully wont get that far with yourself ,but company may see fit if your in a pension scheme to medically retire you.

[Hidden in reply to enen]

At last i can be of some use on here.......I have just been diagnosed with PMR and i AM a Occupational Health & Safety Officer. Not sure where you are, but in UK, The employer has to make 'reasonable adjustments' to your working environment for chronic conditions and disabilities under the Equality Act - this can include changing duties, special equipment or aids etc. I consider PMR to be the former (our health insurer certainly thinks so). The employee also has a legal duty to cooperate with the employer in implementing these e.g. undergoing training. If UK based, You should ask your HR or OH/HS dept for a management referral to an Occupational Health Physician who will assess you and make recommendations to your employer for adjustments. Only a very foolish employer would ignore such advice or not have you assessed by a medical professional in the 1st place. message me if you would like further help - same goes for anyone else with work issues in UK. I've not handled a case of PMR before, but have had experience of cases involving Fibromyalgia and other M-S problems.

[PMRpro Ambassador in reply to Hidden]

Just wondered if you had noticed this thread is 7 years old and this post is 3 years old. Don't be surprised or upset if you don't hear back.

[PMRfacebook]

Hi

diagnosed with PMR in February 2019 and signed off sick. I've had referral to occupational health and have requested reasonable adjustments - e.g. part time , reduced long distance travel, more rest breaks. I no longer feel I can work full time whilst ensuring i do the necessary exercise, rest etc to reduce symptoms and mitigate side effects.

Organisations will need to become more flexible with PMR sufferers . It is covered under the Equality Act so employers have a legal duty - I know cos I work in HR.

[Hidden in reply to PMRfacebook]

Hi pmrfacebook, I just wondered if you might like to cut and paste this information into a new post. The message you replied to is 3 years old. It's always good for people. In the UK to be reminded they have rights at work. I had to retire because of ill heath. I had been assessed by PACT years ago, but few of the recommendations were put in place by my employer. Eventually it became impossible to carry on but I was so ill I didn't have the mental or physical wherewithal to appeal the termination of my contract when I had extended sick leave (other issues than PMR). Many people with pmr have to work and often can't or won't take sick leave for various reasons. This reminder may help them.

[Holycow2]

I was diagnosed with PMR 2 years ago. Started on 15mg and within 4 days pain was completely gone. I have tgen got myself down to 1 or 2mg. I have severe arthritis in my hip and am having hip replacement the beginning of December. I then started to get bad aches in my thighs and thought was PMR back even though I only had in my shoulders before. I was at around 7mg then (I’ve been up and down) so went up to 10mg. I’m now on 5. Saw the Rumy a couple of weeks ago where I had bloods done ect. He no longer thinks I have PMR but advised me to stay on 5mgs untill after my operation and then to slowly taper right down. He said he thinks the leg pains are due to the arthritis which I also have in my knees.I will be seeing him in 6 months. I’m lucky im still working this was something I was determined to do even though im in extreme constant pain I will not give in! Also I feel that if I was sat at home things would get worse and a lot stiffer. I work for the Probation service and I am now mainly desk based.

[Rugger in reply to Holycow2]

Did you notice this post is 12 years old?!

[Holycow2]

obviously not. And your point is?