Working with PMR

[Aanneml]

I'm currently off work due to the medication I'm taking. Does anyone manage working fulltime doing a highly stressful job? I've worked trying to ignore the pain due to being off work previously. My employers can be very supportive but its obvious they don't understand the condition or don't want to, they can't even pronounce polymyalgia rheumatica!

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome - reponded to this post rather than first.

See you have PMR - can you tell us when diagnosed - and are you on steroids? If so, what dose. I see you mentioned Pregablin in other post - is that all you’re on? Any other medication?

Sorry to ask more questions when all you want is answers - but helps us to know more, to help you.

Most employers don’t understand PMR, but your HR staff should, and should be helping to make your life easier, by discussing working.

[Aanneml in reply to DorsetLady]

I've taken every strong painkiller my GP could prescribe even Prednisolone, the pain returned and because I still wanted to manage working with the pain he referred me to a Rheumatologist who gave me a shot of steroids after diagnosing PMR. The steriod worked for a bit but not much change, at my next appt (7wks later) I told him not much change, I'm still having pain. He told me he couldn't do anything else for me and checked me over, (said my blood tests were ok, I could lift my arms above my head and bend over). His last words were 'it's a complicated condition'. I left feeling like a fraud, was depressed for a week. Spoke to my GP to tell him, he has no doubt I'm in pain, ESR is still raised. Isolation began and I've had nothing but Pregablin (225mg x2 daily).

[SnazzyD in reply to Aanneml]

I think there are some misunderstandings here. PMR is an autoimmune condition where your immune system is acutely and chronically attacking certain arteries to the muscles. There isn’t a fix and steroids are used to reduce the inflammation so that blood flows better to the muscles, thus reducing the pain. Meanwhile the condition will carry on until it burns out in a few years. Generally, pain killers of any type do not help. Yes, the shot of steroids will have helped for a bit but once the effect wears off the inflammation builds up again because it hasn’t stopped the autoimmune activity. The usual regimen is to prescribe from 15-25mg Pred and reduce it slowly over time, all the while making sure you don’t reduce faster than the condition is waning. I have no idea why your docs are mucking about with piecemeal treatments. They can do something for you and that’s prescribe a continued dose of steroids. The body will be very in need of rest and TLC, partly because of side effects but mostly due to early disease. The body is in battle with itself which takes an awful lot of energy. Stress and over doing just makes everything worse.

The danger of deciding not use steroids or not being given them is that uncontrolled inflammation can progress to GCA, which can cause blindness, stroke and aneurysms. This is an extremely inconvenient condition and it does tend to hit very busy and/or stressed people. Trying to knock symptoms on the head so you can carry on as normal usually ends in tears. First, find a doc who understands PMR and has up to date information. Good luck!

[PMRpro Ambassador in reply to Aanneml]

Dear lord - there is nothing complicated about attempting to manage it properly! But they have to accept that this is a chronic illness, similar to an inflammatory arthritis, but it doesn't respond to the DMARDs they use there, pred is the equivalent to the DMARDs. That is absolutely fundamental - pred is the mainstay and you have to use it long term.

You usually start on about 15-20mg oral pred until the symptoms are well controlled (4 weeks at least) and then you reduce slowly to find the lowest dose that achieves the same symptom relief as the starting dose. You don't take a short course of pred and if you use the depot injections they are administered monthly so the effect from the first hasn't gone before the next is due.

We have someone on the forum who uses the injections and a lot of us have well managed PMR on oral pred. This:

rcpe.ac.uk/sites/default/fi...

is a guide aimed at GPs to help them look after their patients they don't send to a rheumy. Though it sounds as if your rheumy could do with reading it as well!! It isn't perfect - PMR often lasts a lot longer than the 2 years that is based on - every tapering regimen in the literature has the codicil that tapering MUST be adapted, tailored to the individual patient. But most doctors don't read or don't register that. Nor will they admit that for half of patients it can last for more than 6 years, even if those patients are at a low dose of pred for a lot of the time:

medpagetoday.org/rheumatolo...

[DorsetLady PMRGCAuk volunteer in reply to Aanneml]

How long were you on pred tablets and at what dose? I guess just short term to see what happened.

Usual starting dose is 15mg, but that’s not enough for everyone , so it may need to be increased 20mg. You should get at least 70% relief from the Pred, some people almost immediately, others a week or so.

I think you need to go back to GP and say you are still in pain, and if it’s PMR then you need to be on steroids - no other painkiller will help.

This is latest info on PMR treatment - have a read and show GP if necessary - rheumatologynetwork.com/new...

This is a bit more reading for you, might help you understand your illness - healthunlocked.com/pmrgcauk...

[Constance13]

Neither could I at first!😂 Someone on here calls it "Pollythingy".

[suzy1959]

So am I right in thinking you had a shot of steroids which didn’t really help and the rheumy thought it should last forever.? I remember being given a shot right at the beginning as a test. This usually lasts a month at th3 most and did help me but not as much as being on regular daily prednisolone which is the usual treatment. That first rheumy of mine decided that there was nothing wrong with me! It took 2 years for me to get a definitive diagnosis and I have had PMR for over 8 years now.

I am also on my 4 th rheumy as they are not all any good!

Pred. Is really the only treatment that works if you have PMR. Normal painkillers don’t work.

It sounds like you have not had very good advice from either GP or Rheumy and have been left without adequate treatment. Many of us have had to learn to be our own advocates with the medical profession as there is a lot of ignorance out there.

[PMRpro Ambassador]

I see from your profile you are of black ethnicity - is the rheumy 100% sure you have PMR? The rate of PMR in black and Asian populations is very very low. I'm not saying it isn't PMR - but in all the years I have been on the forums (12+) I have met only one other black lady with PMR.

[Aanneml in reply to PMRpro]

Well maybe I'm one of the lucky ones!

I think I need to hide my ethnicity ...

[PMRpro Ambassador in reply to Aanneml]

Why? My concern is that something is being missed.

[Hidden]

Hi... I struggled in a stressful sales job... the mobility needed, long car journeys, multiple meetings a day with tube journeys... rush hour having to stand up... was horrendous that I just couldn’t do it and am now on a long term sick leave under a company insurance.

[SheffieldJane]

I cannot imagine the horror of trying to do a highly stressful job and manage the pain and stiffness of PMR, particularly as you are surrounded by a lot of ignorance. People do though, but it works against recovery. I hope that the advice you have had leads to an improvement in your current situation. It sounds intolerable. Let us know how you get on Aanneml. This is a knowledgeable, supportive website - a life saver at times.

[Aanneml in reply to SheffieldJane]

Hey Sheffield Jane, I've not had any advice about working with PMR only what I've read online. When go back I hope they find me another role that's less stressful. I'll update the feed when/if it happens. Thanks x

[SheffieldJane in reply to Aanneml]

Can you anticipate this by setting a meeting with HR to come to a mutually satisfactory solution that involves adaptations to your working pattern, hours, specialist equipment? This is very much part of their job to ensure that they meet their legal obligations to you. Are you in the UK? I am less confident of other countries policies.. one poster got to sleep at lunchtime on her head teacher’s sofa. This act of kindness helped her to retain her job. It was a huge boost to her commitment.

[Aanneml in reply to SheffieldJane]

No sofas where I work but thanks for your advice. I've got a meeting on 19th with support from the union I'm sure that will prove I need more support. I've had a Access to Work assessment which recommended a chair, a foot rest bed and back support all were postponed due to covid. My financial advisor said I could reduce hours when I'm 60 in 4mths. I'm so looking forward to retirement and plan to do phased retirement as soon as I can.

[SheffieldJane in reply to Aanneml]

That sounds quite positive actually!

Any chance of early retirement on health grounds?

It was by far the most advantageous scheme at my work.

Pacing is the key to getting things done, but that does mean that you need rest periods. Stress is so bad for these diseases, I found that I had almost instant pain and flu symptoms from even a small argument. You are going to have to emotionally withdraw from this job - in preparation for retirement. In preparation for your meeting, you need to think what your employer could do to enable you to manage your disability more comfortably and stay at work. Do a kind of thought shower on what could help. I hope your end goal is in sight. It sounds like you have given a great deal to your work. It is your turn now.

[Coffeebeans]

I work full time in a very busy, high volume job - this time of year is the worst!

I echo the others, yoy need to self advocate and really get to the bottom of whats going on. That can be hard in its self.

How I manage? I had reduced hours for 2 months while fast tapering because of the pain. My employers were happy that I couldn't drive (couldn't turn my neck enough) after all its a long term condition that they need to take seriously just like they would MS/other disability.

Now I'm on pred I'm back to my full role BUT I approach life differently now. Work is not the be all and end all. I can be committed without compromising myself and if I'm tired/stressed I listen to my body and ease of the gas. You can only do whats possible - for me that was quite a change in how I do things.

One other thing, worth seeing occupational health at work if you have access and ensure this is properly recorded in your HR file.

[Aanneml in reply to Coffeebeans]

Thank you, I am waiting for return to work date then see another OHU person I'll have the usual phased return with gentle ease back in my role but likely move to another job which I'd prefer, won't know about that until the end of the month.

[Raven1955]

I've mostly worked full time for the 3.5 years that I've had PMR. My biggest issue was dealing with the pain in the early months after being diagnosed. My rheumy tried to reduce my pred dose too fast and it resulted in 2 major flare ups that caused me to have to increase my pred dose even higher. I totally sympathize with you and the idea of working in pain, let alone with a lot of stress from work. I went through the same thing and saying that it was no fun is a major understatement. Starting off the only thing that matters is having your pred dose high enough to knock out all or almost all pain. Once you get the pain under control you'll have a chance at dealing with the stress and work load. Initially don't even think about reduction of your dose. Just keeping your pain under control and getting your self in a routine that will allow you to handle your work is what matters. Only then do you want to start slowly reducing your dose. Anytime stress brings back the pain, you may need to increase the dose for a few days until you get the pain under control again. You can do it! Starting out is rough but once you get settled in (it will take a while) you'll find you can still pull the full time. Best wishes and good luck!

[1Unknown12]

If you get the chance read Kate Gilbert book on polymyalgia rheumatica and giant cell arteritis. A survival guide.

My wife bought it for herself and me to read and understand the condition. It helped me. As I run my own business nothing high powered. Kate Gilbert was a university lecturer so her information may help you more than I can and you may feel it more relevant.

Take care

Regards

A.

[PMRpro Ambassador in reply to 1Unknown12]

She isn't a medical lecturer though, her field is also business I think, and it is the story of her personal experience - so why should it be more relevant than what you can say?