Flare or relapse after coming off prednisolone

[Roastcauli]

I am new here am 59 and fairly fit. I was put on prednisolone by GP for PMR 2 years ago and it really helped my symptoms. I reduced gradually and came off around May this year. Ì had a fall when I fainted in September and since then have felt pain in shoulders and neck and knees and felt quite fatigued. Can a fall cause a flare up and if so what's the process if you have come off prednisolone ? Will the GP restart it at the original 15mg dose? Currently waiting for blood results for next step. Appreciate any advice.

[DorsetLady PMRGCAuk volunteer]

One possibility is that PMR was still “lingering” and although not enough to cause issues (it can take months for the inflammation to build up again) the fall was the catalyst for it to become a problem.

Although 2 year period is quoted in most information, PMR can and does last a lot longer for some.

Assuming you have tried normal painkillers without relief.

If it is PMR and provided it hasn’t got too much of a hold, a smaller dose than 15mg may well suffice……perhaps as low as 5mg. But you won’t know until you try….and worth negotiating with GP when you discuss.

[Roastcauli in reply to DorsetLady]

Thanks very much for this I will see what the bloods reveal.

[PMRpro Ambassador]

A fall can cause a flare - there is even an article in the medical literature on it. But as DL says, a return of pain in about 4 or 5 months after stopping pred is very typical for someone with very low level disease activity but where zero pred is a step too far. It can take a few months for the dripping tap of inflammation to fill the bucket until it overflows.

Usually it means that what you need is 1mg or 2mg at most and often a week of 5mg followed by a drop to 2mg will work well. But you have to try to find out where you are now.

[Roastcauli in reply to PMRpro]

That sounds not too bad thanks for your advice. Will see what blood tests say.

[Louisnhoe]

5mg was enough for me. I restarted prednisolone at he end of January this year after 7 months off. I stayed at 5 for about 4 months and am now symptom free at 4mg.My plan now is to reduce by .25mg using DSNS method.I don't care how long it takes.It's just so lovely to be feeling well again ( thanks to all the great advice from this forum ). Good luck and keep us posted.

[Roastcauli in reply to Louisnhoe]

oh that is good to hear it's so disappointing having gone back to feeling fine when it returns.

[Louisnhoe]

Yes. I was very disappointed when I had to go back on the steroids. However, I had only been on them 16 or 17 months and since joining this group have more knowledge and confidence moving forward. My GP is also supportive of my slow approach as always advised here especially at these lower doses and it just makes sense to me and I reduced from 5 to 4.5 and then 4 with no problem at all.So as PMR is probably going to be around for me for a while I feel better about the future smaller tapering amount as and when I feel ready. Hopefully if you need to go back on them it might only be 1 or 2mg,but not the end of the world if 5mg. It's still low. Let us know how you progress.

[Roastcauli in reply to Louisnhoe]

FIngers crossed I'll let you know how it goes.

[PMRrunner]

I agree with Dorset lady in the fact it had had probably never gone away. I tapered to zero prednisolone with a few 'niggles' and gradually over the next few the stiffness and discomfort returned. I was put back on 5mg and this was enough to take the stiffness away. I do take methotrexate so that has possibly helped with the low dose.

[Roastcauli in reply to PMRrunner]

Thanks for that info yes I realise it probably had not gone away but wasn't prepared for the return of pain! Do you think the damper weather also affects it? I will see how I get on with results of blood tests.

[DorsetLady PMRGCAuk volunteer in reply to Roastcauli]

Quite likely, see this -

healthunlocked.com/pmrgcauk...

[PMRrunner in reply to Roastcauli]

I don't think the weather affects my PMR.

I've been back on prednisolone for a year now, I had tapered to 4.5 mg but had shingles quickly followed by covid so went back up to 5mg. I've now started a slow taper back to 4.5mg. Let us know how you get on.

[HeatherZim]

I have had polymyalgia for eight years. I am 75 now and only recently managed to reduce my long-term Prednisolone doseage of 10mg to five. Three days ago I was hit by an awful flare that left my upper body almost crippled. I went back to 10mg, but with no change yesterday took 15mg. This morning still crippling pain so I reluctantly went up to 20mg. It is so depressing doing this because coming down is such a long, drawn out exercise. But the pain was too bad. Hopefully tomorrow I will have responded to the pred. Previously that is what my GP has prescribed for a flare. Coincidentally I also fell about three weeks ago and cracked a rib. I wonder if that stress hasn’t partly caused the flare.

[PMRpro Ambassador in reply to HeatherZim]

A fall can be enough to cause a flare - but it is also possible you will be able to drop back quite quickly once it settles down,

[HeatherZim in reply to PMRpro]

today is fractionally better than yesterday. Wondering if after just one day on the 20mg I can reduce to 15. Unfortunately I live in a country where pred is not available in smaller amounts than 5mg pills. Cutting them is hit and miss.

[DorsetLady PMRGCAuk volunteer in reply to HeatherZim]

“Fractionally better” is not really enough, personally I would give it another few days…just to make sure

[PMRpro Ambassador in reply to HeatherZim]

I wouldn't, give it a few days at least. Hit and miss doesn't matter too much - it is less than the higher dose but not such a big drop and when you cut one tablet it will balance over 2 days. What we don't think works well is alternating (say) 20 and 15 to average 17.5 - far better to cut a tablet and have (say)17.4 and 17.6. Do you pharmacies not have access to pill cutters? They do a reasonable job usually. There are people who have bought fine scales to split their tablets - but only supplying 5mg tablets does make it difficult for us.

Practice helps with cutting - and then using the slowed tapers you can find in the FAQs makes it not too bad.