Working with PMR&GCA

[lesley2015]

Hi

I am currently signed off having had a flare, my bloods reflect this although thankfully, not up to their original levels.

I have looked at my options, having been on steroids now since June 15, I am on a wobbly 18mgs, it seems when I return to work, the pressure begins and I have another flare. (just reduced again from going back up to 20 from 16).

I do not unfortunately have the option of stopping work, I could stay off a little longer but I do need to work. We have just moved house to reduce our mortgage so I can reduce my hours.

I am considering a phased return to work, and reducing hours. I have beend ofered 24 hours - which will be easier if the work load is reduced and I can manage this. I will be doing a four day week, and hopefully one of those will be at home. (They had originally said I could do one in the office and 3 at home, but have changed their mind!)

Has anyone any suggestions what has worked for them ..... I do not want to slow the healing process down by asking too much on myself, but I do need to contribute to the business. Although I certainly am nowhere near working at the level I was before - preds befuddle my brain! I have a 20 mile journey to the office.

Also, I started taking my preds at night. FIrst morning I felt fantastic, the second not so good - realised on my first day I had taken morning does and then again at 11pm - so almost 40mgs in a day - it relieved all discomfort and gave me loads of energy - but clearly don't want to be on that dose. I am going to keep taking before bed, it seems (for me anyway) to increase the night sweats but stops the trembling in the day.

Thanks for any advise/comment you may have.

[Meg1711b]

Lesley,

I have found that when I first start to feel pressure/stress/shaky/fatigue, if I immediately take action to "recharge my batteries" I can avoid crashing, and get some energy back pretty quickly.

If I can, I lay down for a bit. If that's not an option, I sit down in a chair, let my head drop down (chin to chest), relax my body and ignore anything happening around me. Just 2-3 mintures in this position is often enough for me to put more energy in the tank and be ready to be productive again.

Of course, the bigger challenge is getting myself to recognize those early signs and stop what I'm doing, instead of pushing through to finish.

I've also found it helpful to change to a different task, and come back later to whatever I was working on when I started to feel iffy.

I'm looking forward to the day my brain is not befuddled by pred!

[Meg1711b in reply to Meg1711b]

Supposed to say 2-3 minutes!

[lesley2015 in reply to Meg1711b]

Thanks Mg1711b - how long have you been working with the condition? I worked through before diagnosis, then from June to mid Sept - when I have a real flareup. I h ad 3 weeks off, went back too soon with even more stress than I had left behind.

This time I have been signed off for a month - I know the GP would happily sign be off for longer but I don't want to look although I am being unreasonable, so will try for reduced hours. The problem seems to be work takes absolutely all my energy and leaves me nothing left, so everything else also becomes really difficult (housework, shopping and just doing normal things).

Thanks for your reply

[Meg1711b in reply to lesley2015]

Lesley,

I had a part time accounting job I did from home-about 10 hours per week. That got to be too much, as I could get the work done but had no other energy left for making meals, housework, etc. I took a one year sabbatical starting mid October. It made a huge difference to be relieved of the pressure of deadlines.

Luckily my husband has a full time job, so we don't miss my income.

I'm feeling better all the time and hoping to return to the job next year. But, my markers are still high, so I'm still taking it a day at a time.

[Meg1711b in reply to lesley2015]

Not sure I fully answered your question. I had PMR about a year before diagnosis. Then worked for another 10 months, while on pred. So, I worked about 22 months before, I admitted I couldn't keep doing the job.

I am making headway on all the things around the house that have piled up over the last few years-the repairs, the clutter, etc. I just do a little something each day.

It has been a huge relief not to have a job while dealing with this issue, and I wasn't making much progress until I stopped working.

[PMRpro Ambassador]

It depends on your job doesn't it? And how you commute. And whether that reduction in hours is accompanied by a reduction in work load - because that really doesn't follow!

Is there somewhere where you can rest at work? A room where you could put up a "zero gravity" folding chair (amongst others, Lafuma make them, I've had mine for about 25 years!) would probably be enough.

Have you tried splitting the dose? Enough at night to make early morning less hellish and then take the rest in the morning might help both aspects of night sweats and daytime shaking.

I worked - but the morning commute was from bed to the computer desk... I could no more have commuted and then worked than have flown! Won't they rethink the 3 days at home, 1 in the office? That I might have managed.

[lesley2015 in reply to PMRpro]

Thanks PMRPro

I manage a Veterinary Practice with four branches, so it is pretty stressful, I have a staff of 50. They seem to find me wherenever I Hide!

I think if they want me back in three weeks I will offer to do 2 days in branch and 2 at home and if not, say I am not well enough to come in for more. I drive in, the traffic is pretty awful and if I haven't slept - I know its not a good idea for me to drive.

I had not seen the suggestion of splitting the dose, will that control the symptoms of the PMR/GCA just as well?

[PMRpro Ambassador in reply to lesley2015]

It may be better. The antiinflammatory effect of pred lasts 12-36 hours, depending on the person. If you are towards the 36 hour end, once a day is fine, if you are a 12 hour person then by far the best result will come from splitting the dose. US doctors often suggest it.

The "early morning" single dose concept is supposed to reduce the long term side effects for short term use of pred. We are going to suffer adrenal suppression pretty much whatever dose we are on because we are on it so long so that aspect is less significant.

Some doctors apparently think that splitting the dose is a more natural way to take the pred, reflecting the body secreting cortisol in boluses. But for us - what works best for the individual patient is the best. Everyone is different, everyone responds to pred differently and their PMR is different.

[lesley2015 in reply to PMRpro]

Thank you - I will try anything! So I will split tonight dose, I cant do i exact because of the table mgs, but I doubt that matters?

[PMRpro Ambassador in reply to lesley2015]

It doesn't need to be exact - some doctors say 1/2 and 1/2, others say 2/3 and 1/3 and I know people who manage to take just a few mg at night and the rest in the morning. As I say, everyone is different anyway.

[Rose54]

Hi

I have had PMR since August but for 3 years told it was CFS I had 4 months of work unable to do anything much .Started on 15 Pred now down to 11 managing ok at present but have to monitor blood pressure as high.Went back on a phased return to work 3 hours a day for a week then increasing till doing 7 hour day.

I can only manage to do half I could do try to walk the 15min walk to bus station each morning then a 15min bus ride drops me right outside my work .I do get the bus all the way home .I used to walk 3 miles each way a day but no more.

I have been back at work 4 months if it does not work out have option of reducing hours or going off sick again for 6 months then medical retirement .

My job is stressful as support Mental Health ,Drug and Alcohol Abuse ,Single parents, Teenage Parents ,Homeless and Elderly with benefits ,finance ,and housing related issues .

Still have 3 years before retirement and no other income coming into the house

However if things get to much I would reduce my hours .

I get a inner trembling which when this happens I know I need to rest.

Take it easy weekend and try to rest

Hope this helps

You may benefit from a few moths sick to recharge your batteries

Best Wishes Rose

[lesley2015 in reply to Rose54]

Thanks Rose, I think we all feel vulnerable leaving our role for too long - but I fear you may be right - and I may need a little longer off. Like yours, the role is very stressful, so saying I will finish early - in reality does not always happen!! I have just dropped below the 20mgs, but fear it is not controlling the GCA, so unsure if I should just wait until that is managed before considering returning.

I have another 11 years before retirement, so reluctant to change me job but need to be realistic also. No easy solution I fear.

Thanks for your reply Rose - take care

[CJ-pmr15]

I split my dose and it made a huge difference. Before this I was struggling to work 5 hours per day. After I am working up to 7 hrs. However work is pretty much all I do. I've found that if I work then that's pretty much all I can manage. I work from home and definitely could not manage if I had to commute. Pretty much all other life has been put on hold. I do nothing in the evenings apart from rest. So work is a huge commitment but needs must. I'm about 18 years from retirement.

[lesley2015]

I know what you mean, life balance goes out the window when I am working, I can seem to do one or the other (neither well!).

Thank you I will try splitting the dose ... and see if that helps.

The drive causes me a problems, if I leave it too long and feel exhausted, then I have a 45min - hour drive home, not good or safe!