Not again!

[Janann25]

I’ve been on 5mg Pred for a couple of months and felt well so decided a month ago to try a slow taper to four and a half. Unfortunately that didn’t work but, with help of this forum, managed to get back on track. So, for the last few weeks I’ve been feeling well on 5mg again. Unfortunately, last week I experienced quite a traumatic event and became extremely emotional and distressed. I’m very pleased to say I’m starting to cope better but my PMR isn’t happy! My concern is that having so many changes my dose, am I causing even even more problems with managing this illness. So, I’m wondering whether I should just stay on 5mg and hope I settle down again or should I go through the routine of increasing for a while.

Thanks so much for all your help.

[Hidden]

Hello Janann, just to say I am sorry to hear of your experience last week, and the impact it has had upon on your emotional and psychological, and physical health and well-being. I do hope with time and rest, and support that you continue to recover and feel better. As to your dose, I am sure the others are far more suitably placed to advice you and no doubt will be along soon. Take care, look after yourself 💐💐 C.

[PMRpro Ambassador]

You could try just a few days of more - usually doctors suggest adding 5mg to the dose where the flare occured for up to a week and then dropping straight back to the last dose where you were well. Like that you don't need to taper again. Trauma, of any sort, is quite able to upset the apple cart - even a slight trip!

[Janann25 in reply to PMRpro]

Yes, and this was definitely more than a slight trip 🙁. I’m just so disappointed that I need to increase my Pred again - I’ve had a very rocky road over the four years since my diagnosis and I really hoped I wouldn’t have to do this again.

[PMRpro Ambassador in reply to Janann25]

That's just the way it is - for some of us the PMR journey lasts a while. And life has a habit of chucking a spanner in the works, usually just as you think you are doing pretty well. And then there is 2020 - which, as I said to someone the other day, has been a bit of a cow all things considered,

[Janann25 in reply to PMRpro]

Oh so true 😢

[Hollyseden in reply to PMRpro]

When lockdown started, I had to phone surgery to ask for pred, they won't put it on repeat. Anyway doctor called me back to check how much I was taking etc and told me to stay at that for the foreseeable future. Don't try to taper during these crazy times. I'm down to 3 so it's a low dose but I haven't been able to get any lower anyway so I was happy to take his advice.

[PMRpro Ambassador in reply to Hollyseden]

Sense prevails - at last!!!

[Hollyseden in reply to PMRpro]

That's exactly what I thought too!

[Thelmarina in reply to Janann25]

I thought I was doing fine but extra pressure vroom - extra pain. Sorted now but it reminded me of how big a part stress undoubtedly plays in this bonkers illness. Don’t be too down hearted - my daughter had this comforting phrase ‘Ma think of it as going sideways rather than backwards’ . Good one! (Specially now Strictly is back 😀).🌺

[Hollyseden in reply to Thelmarina]

Ah Strictly the answer to all ills. 💃 Actually having something to look forward to does cheer us up =less stress 💃

[HeronNS]

The traumatic event, whatever kind of trauma, at your dose level is likely to cause some issues. It could be the need for more cortisol, as 5 mg is the dose where adrenals really have to be stepping up to some degree and trauma means you need more but the adrenals may not be up to an adequate response just yet. If I were you I'd increase the dose. You might not need as much as 5 mg but do it anyway, and drop down again quite quickly after things are stabilised again. If the trauma has resulted in an ongoing issue you may need a little bit more (1 mg?) for a bit longer until you feel more settled. Trust your body's signals.

[SheffieldJane]

So sorry to hear of your trauma Janann. The others have given the advice I would have ( temporary increase, then pause for a while). This has been a rotten year for so many of us. X

[Janann25 in reply to SheffieldJane]

Thank you - yes it’s definitely been a year to remember 😢

[Louisa1840]

Yep - I am up there with you. Can only say you need to do what you need to do and if that means increasing your pred to a high enough dose that makes you comfortable - then DO it. At the end of the day we are the ones who know how our body is feeling - this impacts on our mental wellbeing as well.

I have gone from 6 (not enough) to 15 to cope with trauma and now coming down to 12.

Know that we are all with you...!

[Doraflora]

Hope you’re doing ok now, Janann25. I was late reading this and you’ve obviously been replied by more experienced PMR sufferers on here.

What a journey, eh?

[Janann25 in reply to Doraflora]

Thank you so much for replying. Yes, it’s definitely a journey, one which seems never ending. I still don’t know whether what I’m experiencing is arthritis or PMR. An increase in Pred hasn’t helped, neither does paracetamol. I think I’ll just stay on the 5mg dose for a few more weeks and hope it settles down 🤞