Newly diagnosed PMR, tapering regime

[ChrissieHW]

Hello, aside from Atrial Fibrillation (I’m also on the Afib Health Unlocked forum) I’m an active 73 old who endeavours to lead a healthy lifestyle, exercise, eating and so on . PMR came out of the blue late Jan ‘23 and I was promptly diagnosed in February. I was started on 3x5 mg Prednisolone which worked wonders , all pain and discomfort went and masses of energy !! But, after 4 weeks on 15mg my doctor has reduced me down to 10 mg ….. this is my 6th day on this dose, I’m taking 5mg a.m and 5 mg pm , I’m ok in the morning but fatigue sets in in the afternoon with a very slight ache at the top of my head, not sufficient to warrant paracetamol and nothing like before. I’m fast learning about this condition via this wonderful forum and I’m worried that I’ve been reduced too much too soon and what effect this might have going forward. Many many thanks in advance, Chrissie

[DorsetLady PMRGCAuk volunteer]

Hi and welcome.

Think most will say - too fast a taper - most guidelines say 15-12.5-10mg and not everyone can manage that…15-10mg is too big a reduction, and the return of some symptoms confirms that.

It may get better if it us just a reaction from reduction [known as steroid withdrawal]. but after 6 days that should have receded, the fact it hadn’t hasn’t would lead me to think it may be the beginning of a flare, and it that’s the case it’s likely to get worse… so you need to speak to GP.

But you do need to look at your level of activity [as explained in link below] - you do have a serious illness and need to adjust your lifestyle.

Maybe have a look at this link - and then, in the fullness of time, through the FAQs

healthunlocked.com/pmrgcauk...

[ChrissieHW in reply to DorsetLady]

Thank you so much for your prompt reply! Yes, I will be contacting my GP. The info on this site is amazing and a big thanks to you and other contributors 👏

[PMRpro Ambassador]

If it is enough to keep the inflammation at bay, try to stick with it. That is a biggish change in dose even after only a month so you are likely to notice it, But whatever you do, resist any attempt to get you to reduce more than 1mg at a time in future. You aren't reducing the dose to get to zero and stop, you are looking for the lowest effective dose that gives the same result as the starting dose did so you shouldn't feel worse after a taper step than you did before.

But if the feelings you have now get worse, even only slightly, rather than better, ask to go back to 12.5mg and don't delay it if you feel less good.

[ChrissieHW in reply to PMRpro]

Many thanks to you for your prompt and informative response. Absolutely, next taper discussion I will be better prepared!

[piglette]

I am incredibly impressed you can reduce 5mg in four weeks. That would have laid me out cold! I would suggest reducing below 10mg to go 1mg max every four weeks. I hope your GP will suggest that.

[ChrissieHW in reply to piglette]

Thank you for your advice , most certainly I will not entertain any reduction greater than 1 mg at the next review. I’m going to give it another day(7th day) on this reduced 10 mg dose and if the afternoon fatigue hasn’t abated somewhat , yep, phone call to the GP ! Thanks again

[Croft9232]

I see you are splitting your dose? Is there any reason for that? It may help if you take it as one dose. Others along will say the best time to take it and always with a little something like thick yogurt.

Take Care.

[ChrissieHW in reply to Croft9232]

Hello , that’s a very good point you make about splitting the dose - the latest prescription says x2 a day and I think I’ve just been assuming I was to split the dose ( if a bit of brain fog goes with PMR I’ll blame it on that !). I’m off to collect my repeat anyway and I can double check with the pharmacy - lots to learn but thank goodness for this site . I do take kefir or yoghurt with the tablets and no adverse stomach effects . Many thanks again !

[PMRpro Ambassador in reply to ChrissieHW]

Normally in GCA and PMR the entire dose is taken all at once in the early morning, For some people the antiinflammatory effect doesn't last the full 24 hours to the next daily dose and then they do better with a split dose to extend the effect. If you do go to single dosing and find that happens, splitting is fine if it works better for you

[ChrissieHW]

oh thank you, So far, I seem to have been fine with splitting but I’ll try taking all at once and see what happens. Thanks again!

[Freya32]

Christie,As one in a similar situation to you I sympathise.

As others very experienced have advised... taper very slowly... and not yet.

It is too soon.... get well And feel well first.

I started on pred ina bout Oct. as was all crippled by pmr.

Dr has reduced my pred to 10 mg from 15.

I tried .it was useless... then ran out of pred one w / end and had a horrendous time.

Back on three and will tell Dr when next I speak too him that I will need to drop by only I mg per two days until I get to a comfy level.

So mustget 28 I g tabsfrom him somehow ? Someone please tell me how.

Christie, listen to your body. It knows what it needs.

If 15mgs a day suitsyou then good. STAY THERE. If youneed more ask for more.

Give things time to adjust...and when you feel the time is right only then then drop by only 1 mg at a time, then if comfy drop by two mg.

My face is all swollen, got a triple chin and a red face but as long as the pain stays away I don,t care.

Remember the body can heal itself given the right tools.

At this time prednisolone is a tool along with healthy diet and whatever exercise you can do and whatever vits and minerals taken and sleep.

I don't know what causes pmr and I don,t think that even the experts know but the body just gets sick of inflammation and the adrenals say they have had enough stress and need a rest,

.

All I say is thank God and whoever else for pred as I would be ashes by now if not for it and if I take it til I am ashes then so be it.

(Got a lot of de cluttering to do do before then...and pred allows me to do it. Well actually I can't throw things away... but like to think I may one day.)

We don't get chance to see Rheumatologists here so no advice...except from the kind folk on this amazing site.

Thank you all who have helped and advised me.

Still hoping my hands will recover fully.

Walked in the rain by the sea today...had lunch out,

Couldn't do that six months ago. Heart is a bit dodgy too but as long as I can hear it thudding and stopping but starting up again

then...good.

Be

Positive.

You will soon be able to prune the roses .

X Freya

[ChrissieHW]

Thank you so much Freya for your advice- and for sharing your own experiences. As you say this site is amazing. I think the worse thing about this condition is the sneaky way it just happened out of the blue despite my eating healthily and exercising etc etc . The doctor who is treating me is very approachable and I shan’t hesitate to insist on a much slower tapering regime . I wish you all the very best in your own journey on the way to better health, take care X