Newly diagnosed PMR – returning to work.

[TLW1]

Hi Everyone.

I was diagnosed with PMR 2 weeks ago and I’m currently on 25mg of Pred, down from 30 last week and due to reduce to 20 next week (per GPs instructions). At the mo I don’t have pain but still have a dull ache in my shoulder.

I’m 51 and up until last year I was fit and well, so the onset of the pain and subsequent diagnosis has been a real blow. However, over the past couple of weeks I’ve done lots of reading and mentally I feel more equipped in dealing with everything.

My problem now is that I need to make a decision about returning to work, as physically I don’t know what I’ll be capable of as I start to reduce the Pred.

A few years ago I left a corporate job and retrained as a nutritional therapist and then a massage therapist. Both jobs I really love. In terms of nutrition I can continue my work in this area as I can work from home on Zoom. With massage, as this is quite physical at the moment I don’t feel I could or even should attempt to do this when COVID restrictions ease.

I know we are all different in our reactions and recovery but I was wondering if anyone could advise from their experience on what’s best in terms of any physical activity or work after initial diagnosis and early tapering. My health is most important so although I love my massage work and my lovely clients I don’t want to make myself worse by attempting to do anything that could make me worse. On the other hand, I do want my normal life back!

[SheffieldJane]

The ability to adapt to returning to work is a very individual thing. I can imagine that being a nutritional therapist, on-line initially, would be suitable with pacing and certainly applying all your knowledge to yourself. It strikes me that you may have become susceptible to an autoimmune disease because of your previous presumably stressful working life. In common with many of us. It is a shame that the positive changes were just too late to save your health.I felt concern about your doctor’s orders for steroid reduction. Experience has taught the veterans of this forum that tapering off steroids needs to be done slowly , carefully and intuitively. A 10 mg drop just seems far to steep. The recommendation is that we don’t reduce by more than 10% of our dose is a good one. Rushing this process tends to lead to a flare-up of symptoms. Personally, I think you would do better with a 2.5 mg drop, utilising the dead slow nearly stop method outlined in the pinned posts on the right of the screen, under tapering. It is very early days for you with PMR. Don’t try to do too much too soon. The energy you may feel comes from Prednisalone that only serves to deal with symptoms and the inflammation. The disease continues to chug along underneath in its own time - that could be years. You need to pace your activities, rest a lot and obviously apply all of your nutritional expertise to your condition thereby avoiding the tendency to gain weight and experience sugar spikes. Coming from a fit base and your relative youth will help. Wishing you well. I am glad you found us, there is a lot of support and experience to be shared on here. PMR is a condition that needs to be actively managed. It is possible, to live a relatively normal life and many people are able to undertake suitable, productive work within sensible boundaries. I hope some of this is useful.

[TLW1 in reply to SheffieldJane]

Thank you for your kind reply. In terms of cause I did use to have a stressful job at times. I also suffered quite badly with Endometriosis in my 30s and early 40s. Hitting the menopause probably hasn’t helped. I am lucky that I have all my nutrition knowledge and I’ve already started to put things in place on that front. Based on the reading I’ve done so far though the tapering is of concern. I’m due a review with my Gp in a week but so far I’ve literally had only 2 telephone appointments both lasting a couple of mins. She seemed unwilling to discuss anything and rushed me off the phone as soon as she could. ! Thanks again x

[PMRpro Ambassador]

I do hope he is intending slowing the taper down drastically from 20mg?

[TLW1 in reply to PMRpro]

I hope so. I’m speaking to her again a week and will try to discuss it with her properly then. As I mentioned above my experience with her has not been great so far but as I find out more at least I can question things. It’s great to have a forum such as this. Thank you for replying. x

[jinasc]

Already there is good advice. From SheffieldJane and PMRpro

I am wondering if you can wait, perhaps a couple of months, then resume your massages. assumption. Then when you feel ready. Perhaps cut down on your appointments and perhaps leave an hour between them. PMR impairs the supply of oxygen to your own muscles, perhaps a rest between will help you.........it is a 'suck it and see' situation.

I am thinking you have not been doing them during Covid, but I could be wrong in that assumption.

[TLW1 in reply to jinasc]

Thanks. In a way lockdown has helped as I haven’t been able to work and it’s allowed me time to feel unwell and get a diagnosis whilst not having the stress of trying to work. I’m lucky that I have a treatment room at home so could do a little work when things resume and if I feel up to it , but I also rent a room at Neal’s Yard and a yoga studio so I’m thinking I’ll have to give notice on them as it won’t be cost effective. Hopefully there will be a chance to return at some point but I guess I need to be patient and see how I feel. Thanks so much for replying. It’s great to have somewhere to get advice and benefit from others experience. x

[jinasc in reply to TLW1]

Wow Neal's Yard, brought many memories back of the cheese shop. I worked opposite Rules so Covent Garden was our haunt.

Now, take a look at the Pinned posts, right had side of this page and look, read and absorb the tapering plans.

Whatever your GP says, no more than 10% at a time and push for it. If necessary direct them to this site just in case they want to expand their knowledge (tongue in cheek).

DSNS : This might help you when talking to your GP.

Dr Sarah Mackie was interested and as a Patron and a leading researcher on GCA&PMR and has kindly allowed us to inform you of progress. Dr Mackie emphasizes that you should always talk to your own Doctor.

“We have been trying out the Dead Slow and Nearly Stop (DSNS) steroid reduction plan as part of the FACT study protocol.

The FACT study is a very small pilot study, funded by Vasculitis UK and approved by a

research ethics committee; this study isn’t actually designed to test different steroid

reducing regimes, but is an exploration into causes of fatigue in people taking long-term

steroids.

We incorporated DSNS as an option on the basis that we know that DSNS, or something

like it, is already used by many patients in the community and because we didn’t

necessarily want to taper steroids over-fast in people who were experiencing fatigue. The study is still ongoing.

So far it seems that some patients find that DSNS suits them well, especially those whose

symptoms tend to flare up when they step down their steroid dose.

However, DSNS will not suit everyone. DSNS is just one of various different approaches to tapering the steroid dose, and it has to be stressed that there’s no one-size-fits-all. So you should always talk to your own doctor about what might be best for you.”

Dr Sarah Mackie, rheumatologist, Leeds.

So if one does not suit you, you can always try another.

The Tortoise won the race. 🤔

[TLW1 in reply to jinasc]

Thank you that’s really helpful. My mission next week is to read everything I can on tapering. X

[Liby57]

I was first told I had probable PMR in May last yeast. I work in HR/payroll, fortunately since last March I have been working from hone. Fortunately I had great flexibility with my job manage my hours. There were days especially at the start when I couldn’t work due to the pain. Like you I am very keen to get my life back but you have to listen to your body and not overdo it. I thought I was getting there and doing really well then had to up the meds again.

[TLW1 in reply to Liby57]

Thanks. Glad you were able to manage your work. Certainly at the start before meds I wouldn’t have been able to work at all, even at a desk. The Pred has at least allowed me that. I think I’m being optimistic about doing massage. Sorting my own health out is a priority rather than helping others with their aches and pains I guess. I hope you’re managing with your meds now. That’s certainly helpful feedback so thanks so much for replying x

[Liby57 in reply to TLW1]

I have just arrived at 2mg Prednisolone and am really hoping I won’t have to increase the dose which is what had to do last time I arrived at 2 mg. I do have some pain in my right arm but am currently being assessed for carpel tunnel, having physio and scans. It is hard to distinguish whether the pain is PMR or carpel tunnel.

[suzy1959]

I got PMR at 52. I was a self-employed counsellor working from home, loving my work. Because my diagnosis coincided with my husband being made redundant ( the stress probably triggering the PMR) I actually increased my work initially. I started to get frequent viruses, needing more and more time off, to the point where I realised I had to cut down, especially as the PMR was not getting any better. I fought this reality as long as I could and one benefit of being self-employed was that I could choose how many hours I worked and when.Eventually I developed Osteo Arthritis in both knees and hips as well and at that point I had to accept that I could no longer work and I had stopped enjoying it anyway. So I retired 2.5 years ago, when I was 59. This was not the plan I had for myself at all.

This has been a long process - I have had PMR since 2012- my point is that none of us knows how this will go, but tuning into your body and acceptance of what it is saying is key. I hope you have an easy time of it. I wouldn’t say that I am glad this has happened to me, but that I have learnt some very valuable lessons and, hopefully become a better person because of the challenges!

[TLW1 in reply to suzy1959]

Thank you for sharing your story and I’m glad that you have managed to take positives out of the experience. I now realise this is not going to be quick but like you I hope I can become a better person for it x

[SpaghettiWestern99]

@TLW1 - might be a long shot to ask but I’m in the same situation as you now.

How have you go on?