Help! First flare on my reduction plan, guidance needed please

[Jo1947]

Diagnosed September last year, got down to 10mg of Pred no problem. Have been successfully on 9mg for about 6 weeks, all ok. Started about 2 weeks ago on 9mg one day and 8 the next alternating each day. Three days ago started with shoulder pains. I returned to volunteering two weeks ago for 4 hours on a Tuesday at the National Memorial Arboretum after an absence of 3-4 months. Have to admit I have felt tired after my 4 hours there. Have taken 10mg of pred yesterday and today, no reduction in the pain as yet! Help needed on dosage please and am thinking has the voluntary work upset the balance ? Thank you in advance

[SheffieldJane]

Doing both together was probably not a good idea. ( vw and taper). If it won’t settle try 2 mgs more for a couple of days then go back to 10. Get a pill cutter and try 0.5 each month next time. Perhaps the dead slow nearly stop. Reduce 1 day new dose, 6 days old dose, then next week 2 days new and 5 days old, until it is all new and rest there until all is settled. After 10 mgs is harder. No more than 10% at any one time. Can you taper the return to work too? A couple of hours initially? Good luck!

[Rugger]

As Jane says, a much gentler taper might help, once you've got the pains under control. There's no point tapering further if you're not stable. Have a look at 'Tapering steroids' under Topics at the right of this page. Scroll down to 'Steroid Taper Web App' and you'll see three versions of the DSNS taper that Jane has descibed, as well as many other ways of slowly reducing your dose. (The Web App was developed by Sandra, who has PMR and was studying computer science! It has the blessing of the pmrgcauk.org charity.)

Me: PMR 23 months. 1 flare at 12 months and another recent flare - both probably due to reducing below the level needed to control the inflammation (!) Now on 8mg for 2 months and soon to try DSNS again in 0.5mg steps.

[Jo1947 in reply to Rugger]

Thank you Rugger for your response, sorry to hear of your flares, I don’t think many people get away with having none through their journey. What this flare has taught me is that when we are feeling well it is easy to forget others difficult situation. Poor Melissa is going through such a trying time, as others are also. I have been lucky since diagnosis last September and have realised over the last month I have taken things for granted, have eaten the wrong things, drank too much wine and not looked after my self, no wonder my body is reminding me. I feel guilty for taking things for granted when so many of you out there are suffering so much more. Thank you all on this forum, you are all selflessly there when needed.

[Rugger]

Jo, there's no room for guilt! You're suffering too, feeling tired after 4 hours' volunteering that previously you would have taken in your stride. We're all different in the way that these conditions affect us and we all have to find our own way of managing them - maybe through learning from our 'mistakes' or maybe just by learning to accept that it's just the way it is, for however long it takes. Below is a reply I sent to Elizcarroll, with a bit more detail on how I've dealt with my flares:

"I've had PMR for nearly 2 years and have had 2 flares - each time, I'm sure I went below the dose of pred that controlled my symptoms. I was at 4mg last year and went up to 10mg for several weeks. (Then tapered at 0.5mg / month) By this Easter I had got down to 5.5mg, but flared again and increased to 8mg for what will be 6 weeks by the time I have a blood test (my CRP and ESR seem to reflect the situation) and if all is well, I'll start the DSNS taper in a fortnight, at 0.5mg / month."

You are also helping others by posting, as someone else will relate to what you say and benefit from the replies.

[Jo1947 in reply to Rugger]

Thank you so much Rugger, I really appreciate your words of kindness and help, there are so many wonderful people here on this forum. It was useful to see your detail of getting back on course. I was on a 9 to 8mg reduction have taken 10mg over last few days but not a lot of improvement so have upped to 12.5 today, will see how that goes! I am due for a blood test next week and docs week after, will see how results come out, have a good day,

[PMRpro Ambassador]

Do one thing at a time! And if you are returning to something you haven't done for a while - try to do a staged return, just as you would hope to if it were work.