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[Dinahmite]

I was diagnosed PMR just over 5 weeks ago and put on Pred 15mg. Now am 10 days tapered to 12.5. I can't work out whether the last couple of days or so of pain in my shoulders and arms is steroid induced or if it is my PMR symptoms flaring. Does anybody know how can you tell?

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

A return of symptoms 10 days after a reduction sounds very much like a flare … about long enough for your body to say ‘not sure I like the lower dose’…

Have a look at this explanation - and would suggest you go back to 15mg for 5-7 days and see if that’s better.. if so stay another week, and then reduce by only 1mg a time - you can request 1mg tabs or if you have plenty 2.5mg then cut them in half… works out at 1.25 so not too much above the 1mg. Although 15-12.5-10mg is a recognised taper, not everyone can achieve it…. But you do need to advise GP or whoever put you on taper, that it’s too fast for you… they may not like it. .. but it is what it is…

healthunlocked.com/pmrgcauk...

As you are new maybe have a look at this as well -

healthunlocked.com/pmrgcauk...

[Dinahmite in reply to DorsetLady]

Thank you.

[SnazzyD]

2.5mg might be a standard jump but for many it is way too much and you’ve been on 15mg for only 4 weeks, so your autoimmune activity is likely still high.

[PMRpro Ambassador]

Hi and welcome!

You have the basics already so I would just say much the same!

15mg is the bottom end of the starting dose range and while it works well for some - it did for me - it doesn't for everyone. At the start it is important to clear out any accumulated inflammation to allow a good buffer for reduction. Then the reduction of 2.5mg is more than the recommended 10% of the current dose. So I'd say go back, get comfortable and reduce in smaller steps.

If you are going to get steroid reduction pain it tends to be immediately after changing the dose and it then improves. If it is due to the dose now being even slightly too low to control the inflammation, it may take days or weeks to build up but it takes time and then increases. If you have been at 12.5 for 10 days it sounds much more like a flare and you need more pred at present.

You will get lower - but 5 weeks is very early days. They used to leave patients at the starting dose for a couple of months at least - if only they could get over their terror of pred and go back to that.

[Dinahmite in reply to PMRpro]

Thank you. The stiffness hasn't returned just the pain, though only in my shoulders, top of the back, and arms. Does a flare usually mean both pain and stiffness?

[PMRpro Ambassador in reply to Dinahmite]

Depends on how much and the stage it reaches. And in reality, it is difficult to separate which is which.

[Dinahmite in reply to PMRpro]

Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Dinahmite]

As PMRpro has said - it varies.. and if it's only just beginning -it may spread and be both. Best to catch it before that happens or you'll need a bigger dose of Pred..

[Gimme in reply to PMRpro]

Thanks, useful info for telling the difference. I reduced 5 to 4.5 mg at the weekend and my body wasn't liking it, but I do feel slightly better today.

[Wouldlovetorun]

Hello Dinahmite🙂Speaking from experience dropping pred too much too soon didn't help me.

Hope you feel very much better soon 💐

[Dinahmite in reply to Wouldlovetorun]

Thank you.

[Sungolfer]

Hi and welcome you will find this forum so valuable for all questions you may have along your journey!My story is similar - started on 15 mg on 6 October for 3 weeks - was fine apart from slight discomfort which started around 4 am but lasted until I got going and that was mostly in my left arm! Down to 12.5 which i seemed to tolerate well - again with the same level of discomfort. After 2 weeks down to 10. This taper turned out to be a tad too much and discomfort turned in to a bit of pain - again left arm and slightly in both thighs. Blood tests showed raised neutrophils and C-RP at 12 so GP said back to 12 for 3 weeks then to 11 before hopefully the slow taper down from there,

As has been said by many - we are all different and respond differently to Prednisolone. There’s a standard, there’s a recommendation and then there’s You!

Good luck!

[Dinahmite in reply to Sungolfer]

Thank you. It's very hard to navigate this illness.

[Ridge]

You have done the best you could by joining this forum. I wish I had had the experience and knowledge it affords when I started my PMRGCA journey. I reduced too quickly (under instruction) and that was 4 years ago. I often wonder how I would have faired had I had the knowledge and understanding right from the beginning.

[CMarie7]

It sounds like you are tapering way too fast.

[Body_bonkers]

It does take time to figure out how your body responds but if I have pain, fever and stiffness after 10 days the dose goes up. If it’s just a little stiffness then steroids are likely culprit so will leave it another week and if no change drop the dose

[Tiggy70]

Hi Dinahmite, welcome to the forum. You have come to the best place for expert advice from people who themselves have suffered/are still suffering from PMR/GCA.

Like you I was put on a fast taper regime at the beginning. It was far too quick and I have been yo-yoing up and down with Prednisolone ever since. As a result, after over three years, I am still struggling to get below 10mg. I wish I knew then what I know now. Good luck 🌸

[Dinahmite in reply to Tiggy70]

Thank you. That's so helpful.