Working and PMR

Hi, I am recently diagnosed (August 2020) although had been suffering for months during the first lockdown. I am down to 7mg pred but in the midst of a flare up which has, more than the pain left me exhausted and I have been signed off work for a month. I am a teacher and am 51 and am really anxious about how I will be able to continue in work. Has anyone any words of wisdom please?

[piglette]

I carried on working with PMR. I am not sure my work was as strenuous as a teacher’s though.

[DorsetLady PMRGCAuk volunteer]

There will be answers from some who remain at work, but you do need support from your employers - and you are in a very stressful job compared to some.

In the meanwhile this might give you a bit more info on dealing with your PMR - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Well for a start - you need to be on the right dose of pred for YOUR PMR! You don't tell us your starting dose but to be down to 7mg in less than 7 months is very fast. I'd say you have probably overshot your goal.

You aren't reducing the dose relentlessly to zero - you are looking for the lowest dose that works as well as the starting dose did. PMR is a chronic condition - and PMR isn't really the illness, it is the name given to the symptoms of an underlying autoimmune (a/i) disorder which attacks your body tissues because the immune system can't recognise your body as "self". This creates inflammation which leads to cell damage, swelling and pain. Pred is the only reliable way of managing the inflammation (except the biologic tocilizumab but it is not yet available most places for PMR, just GCA). You need enough pred to clear out the new daily batch of inflammation - if you don't have enough, the left-overs build up over time until there is enough to cause symptoms again.

If you have developed a flare it was possibly 8mg that was what you need at present - it does take some time and if you reduce too often without checking you may miss what you need and by the time you realise you are in trouble you don't really know where it went wrong. Almost all flares are caused by reducing too far or too fast. The inflammation contributes to the fatigue that is a part of almost all a/i illness.

One approach we suggest (and so do many rheumies) is to add 5mg to the dose at which the flare appears. Often that is enough to get the symptoms under control in 10 days or so and then you can drop back to the dose above where the flare occured - obviously the lower dose wasn't enough. It saves starting over again - a mistake a lot of doctors make and that adds to the amount of pred the patient takes. Yoyo-ing the dose should be avoided - i.e. be more cautious about reductions and slow down at any sign of trouble to avoid allowing a flare to get hold because it becomes increasingly difficult to get under control.

As for working - there are others here who work while on pred and there are a couple of teachers. I was 51 when PMR started and I did continue working even with unmanaged PMR for 5 years but I was a freelance translator and worked from home. Having to unfold myslef from the computer chair didn't really matter!

[123-go]

I can understand your anxiety (former teacher: long retired!). You have a demanding job which can be stressful at times. There are other teachers on here who may pop up with advice or suggestions.

Will you tell us your Pred starting dose and your reduction regime, please?

I'm thinking that you may have tapered too quickly before the inflammation in your body had time to settle which may well be the reason for your flare, especially as there was some between onset of PMR and diagnosis when the inflammation built up.

The question of how you'll be able to continue work is a very individual thing, but I would advise no return until you are free from pain and even then you would really need to ease yourself back in gently. If your Headtacher is understanding he/she may agree to a phased return like half days or reduced days. I know this would depend on the budget (supply teacher) and willingness to allow this but in any case you should not go back until your body lets you know it's ready. Don't forget the planning and staying after the bell for all sorts of reasons.

Are you Primary or Secondary?

Oh, and don't start clearing out cupboards or overdoing things while you're off!

[Hidden]

Thank you. I think you are all right about my reduction but I have been pretty much left to my own devices and may need to increase the pred.I am thinking of going down to 3 or 4 days from September as I teach secondary students food and nutrition so many days I don’t get to sit down at all!

When I get the flare under control will I feel less tired? Does the fatigue just come with the flares? I am trying to gather as much info as I can to help me make a decision about my working pattern. I can’t stop working completely as we still have teens at home,which is probably why I am struggling with acceptance of the condition and the need to rest as I am a busy bee and not the sort of person to sit down and relax.

I think my issue may be mental as well as physical as I have reduced the pred to avoid gaining weight.

Having typed this it sounds like I am in a bit of a mess!!!

[PMRpro Ambassador in reply to Hidden]

It's impossible to know if the fatigue will improve once the flare is under control. Sometimes it does and sometime it is the actual underlying a/i disorder that is causing it and that is unaffected by the pred, it just chuggs away in the background.

This may help with the fatigue analysis:

healthunlocked.com/pmrgcauk......

read all the links - especially the last one.

You can't reduce the pred to avoid gaining weight without risking the symptoms returning - you have to have enough pred for the PMR and it always wins.

However - cutting your carb intake drastically, especially processed carbs, will not only help with the weight gain but also reduce the risk of developing pred-induced diabetes and is also anti-inflammatory - sugar and simple carbs often make inflammation worse.

[Hidden in reply to PMRpro]

Thank you so much for your help and advice. I think my GP does not understand the condition and has only just referred me to a rheumatologist.I am so glad I found this site, thank you again

[PMRpro Ambassador in reply to Hidden]

Time for you to educate them!!!

[123-go in reply to Hidden]

I hope your rheumy appointment goes well. Let us know how you get on.

[whitefishbay]

I carried on working b/c I had to. Not a teacher but work in a school. I would leave an hour earlier and go rest for an hour. Did this for a couple of months til I adjusted. Good luck.

[Kendrew]

Hi there. I was diagnosed May 2019 (61yrs old at the time) and had to take some sick leave due to extreme fatigue and side effects of the steroids...... I'm a qualified primary school teacher but in more recent years, been working as an HLTA in a nursery class in a primary school...... This became long term sick leave and resulted in me not able to return properly until Sept 2020 when I'd tapered down to 2.5mg. I managed half a term and then suffered a flare which resulted in me eventually having to increase my dose back up to 15mg! Being able to work is not just about your stamina and physical capability....it's also about your vulnerability to infections. On a dose of less than 5mg, your immunity may be slightly impaired but shouldn't be a major issue. Above 5mg and you begin to enter the realms of being immunocompromised again. The higher the dose the more the risk. School is an incubator for a whole host of different bacterial and viral infections!I am still off sick (partly due to being vulnerable to covid) because being back on a higher dose has caused a re-emergence of side effects again and increased my vulnerability. I am actually having a meeting with Occupational Health today to discuss my potential return to work in two months time. The worst case scenario is that I may be advised to retire through ill health as too much physical activity and stress are the two main triggers for a flare for me. Yoyoing up and down on steroids constantly would not be a good thing!

Each of us are different, but I've learned that working is not straightforward and there are many things to consider. Your priority with PMR/GCA is your health and wellbeing and this is not a condition you can simply 'push through'!

If I return to work in a few months time, it will be my 3rd (and final) attempt to do so. I'll be on reduced hours and with certain conditions in place. Whether I can sustain my return this time remains to be seen as this condition is completely unpredictable and is very sensitive to any changes or fluctuations in daily routines. My health comes first though and although 'retirement through ill health' is not the way I wish to end my working life, I may have no choice!

You have much to think about and only you will not what you can manage.

[Hidden in reply to Kendrew]

Thank you. I think I am still coming to terms with having PMR. I am seriously considering reducing to 3 days but feel upset as I am only 51 and this will have an obvious impact on my finances now and in the future. It could be worse tho and I need to get over myself!

[Kendrew in reply to Hidden]

Don't be so hard on yourself! I felt at 61, I was young to have been diagnosed!......but 51 is very young. It's not about 'getting over yourself'. You've every right to feel angry, frustrated, upset, confused.......this is a challenging condition to live with and all your concerns are completely understandable and valid. Just don't lose sight of the fact that as challenging as it may be, it isn't life threatening and in the majority of cases it burns itself out eventually. I'm sure like me you'll get full pay for 6mths and then half pay for 6months. I was able to claim Employment Support Allowance when I dropped to half pay. It's not means tested so if you became unable to work you have some financial help available there. Look into what other benefits you may be entitled to.

[suzy1959]

I got PMR at 52 and had a flourishing private counselling practice at the time which I loved. I felt I was in my prime and doing my best work. I finally retired at 59 after struggling for quite a few years. I understand your reluctance to "give in" to it but, as PMRpro says, PMR always wins!! You will take as long as you need to to accept your new normal and, unfortunately, none of us knows how long this will last. I am sorry you have got this but we are all here for each other especially as you have already found out that a lot of the doctors don't understand the nuances of this condition.We've got your back!

[Hidden in reply to suzy1959]

Thank you. It’s good to find people who understand. I am coming to terms with the fact that I can’t teach full time and that I will probably need more time off after the Easter holidays. What I can’t understand is that from diagnosis till recently I have felt ok. Just twinges of pain but now the fatigue is flooring me!Also I think people look at you and because you look ok they are sceptical about the illness. It’s a lot to get your head around.

Did you suffer from 52 to 59? That seems like a long time. In my head I was going to be ok again after 2 years or so my doctor said!

[PMRpro Ambassador in reply to Hidden]

There is relatively old medical literature that says 18 months to 2 years. More up to date and realistic work suggests that a third get off pred in up to 2 years. By 6 years, half are off pred. Half of us need a lot longer but at a low dose of pred and living pretty normally though with some limitations, Getting the right dose for YOU is crucial - so is not trying to rush off pred before your body is ready and a lot of doctors cause problems because they are so terrified of pred.

Have you tried to go back to doing more because you felt pretty good? It is easy to go too far.

Did I give you this link?

healthunlocked.com/pmrgcauk......

It may also be a component of Covid living. I have never before had real fatigue problems other than knowing I had to stick to my limits or I would suffer but in the last few months I have been SOOOO tired - I could sleep for Britain given the chance.

[Hidden in reply to PMRpro]

Yes thank you I have read the links. I think perhaps it has been building up. I returned to school in September and life went from lockdown to full speed ahead again, coupled with my ignorance about reducing the pred will not have helped. I also wonder if me becoming (or trying to) accepting of having this condition has made me tired! This morning it felt like someone had poured concrete into my body and that made it harder to get up than the pain. As much as I try not to I do worry about what my bosses will think of me and worry about my students, so much so that I am conducting live lessons for my year 11 classes from home but I know I couldn’t possibly get through a school day.I’ve got a lot to get my head around!

[PMRpro Ambassador in reply to Hidden]

I have the concrete legs feeling - never had it before except when I was on methotrexate but lots of people will identify with that! I think you have hit the nail on the head - and worrying about others won't help.