Should I persevere and keep working?

[Mfaepink1973]

I’m just starting to taper from 10mg prednisolone to 9.5mg using the DSNS method. I’m 71 and until PMR hit I was very fit and active and still working 3 six hour shifts a week in a care home. After a couple of weeks off sick before the steroids kicked in I’ve continued to work but just the last few weeks I’ve had to force myself to go as I just feel exhausted all the time. Should I ask the doctor to sign me off work or keep pushing myself?

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

It's never a good move to keep pushing yourself through, it invariably just makes things worse.

Think you need to speak to GP and have a few weeks off to re-evaluate.

Looking at your profile /bio you seem to have reduced much too quickly initially - and that is probably why you are suffering.

Your GP needs to follow the guidelines a bit better - 2.5mg are very often too much - and anything below 10mg even if it is well controlled at that level should be in 1mg steps...guidelines say 1mg every 4-8 weeks... depending on disease activity and patients wishes...

hopefully now you are using a slower taper it should improve, but what's gone on before does have a bearing on things.

Plus working as you are, does make life much more difficult, many have discovered that.

[Mfaepink1973 in reply to DorsetLady]

Thanks. Doctor has signed me off work for 2 weeks. Do you think I should go back up to 10mg or higher or see if not working helps and continue tapering to 9.5?

[DorsetLady PMRGCAuk volunteer in reply to Mfaepink1973]

If it is mainly exhaustion- and therefore more likely adrenal related, then maybe sit at current dose for another week or so, and give them time to catch up…. But then continue a slow taper, that’s they only way they are going to be motivated to think about working again …

This might explain a bit better - healthunlocked.com/pmrgcauk...

You haven’t any return of PMR pains have you?

[Mfaepink1973 in reply to DorsetLady]

Yes the back of my head and neck and my shoulders have been aching but nowhere near as bad as when first diagnosed

[DorsetLady PMRGCAuk volunteer in reply to Mfaepink1973]

Ahh… well don’t let them get any worse…. or you may need to a take actions as described in here for a flare -

healthunlocked.com/pmrgcauk...

[Mfaepink1973 in reply to DorsetLady]

Thanks. I don’t know what I’d do without all the information and advice available on this group .

[PMRpro Ambassador]

Some people find the poor adrenal function fatigue starts about 10mg and below. It may just be that. Take even longer on the reduction step than DSNS offers and see if your body catches up. But if the dose is getting close to what you are looking for - the lowest effective dose at any given time - then if it is barely managing the inflammation, that can also lead to PMR fatigue.

[Mfaepink1973 in reply to PMRpro]

Thanks

[Gimme]

I think you have to ask yourself whether you are well enough to work. Getting adequate rest is part of managing the condition. Does your work schedule allow for that?

[Mfaepink1973 in reply to Gimme]

Thanks, no I think I was trying to do too much as I also look after pre school grandkids 2/3 days a week. I’ve been signed off work for 2 weeks so will rest more and see if things improve.

[DorsetLady PMRGCAuk volunteer in reply to Mfaepink1973]

…ahh that would do it! Much as you love them…..

[Jigsawlass]

I would suggest that being signed off is probably a good idea. I kept on working in a very active job all of last year and it did me no favours . I have ended up taking early retirement and , in hindsight , if I had taken more time off early on , I suspect I may still be working. Since January this year I have done v little and am now starting to see improvements energy wise . I am tapering v slowly and I think that is key too

[Gimme in reply to Jigsawlass]

Same here. I was forced to retire. I ground to a complete halt.

[Mfaepink1973 in reply to Jigsawlass]

Sorry you had to take early retirement. I’ve taken your advice and been signed off work for two weeks.

[Raven1955]

I've dealt with PMR for 6-1/2 years while still working full time. I'm 68-1/2 years old now. I struggled the first couple years with exhaustion and pain until I finally really paid attention to what prednisone dose was effective and learned to be patient, reducing my dose very, very slowly. The lowest effective dose of prednisone is what matters. The other half of the formula for me has been knowing my limits at work. Push too hard, try to do too much, stress over work and I was guaranteed to have issues. It's a constant balancing act and no easy thing. If you aren't allowed to adjust and pace your work, then it'll be very hard to continue working. Even if you elect not to work, don't be pushed into reducing your prednisone dose too quickly.

It took me a long time to get into a routine that works for me and each person has to find their own level of prednisone dose and what work level they can tolerate at the same time. Some days I over do it and pay the price with exhaustion for a couple days. Do too much and your prednisone dose won't be enough suddenly. I'm now almost down to a solid daily dose of 1 mg but that doesn't mean I can be lax about it. It just means 1 mg is enough to control my PMR after 6.5 years. I wish you success whether you decide to keep working or not. Your body is going to tell you what to do. You just need to pay attention and interpret what it's saying.

[Mfaepink1973 in reply to Raven1955]

Thanks,