Withdrawal or flare

[arvine]

would it make sense for all over body joints pain to ramp up after being on new lower dose prednisone for only 5 days, some pain prior but today 5 th day at 3 1/2 taperin dead slow method from 4 mgs, all if these symptons not the same as original symptons back in Oct 2016, arthritic attack or pmr withdrawal?

[DorsetLady PMRGCAuk volunteer]

This explains steroid withdrawal versus flares -

healthunlocked.com/pmrgcauk...

[arvine in reply to DorsetLady]

Ok thank you

[Suet3942]

From my own experience I seem to have pain for about 2 weeks after completing a taper and then I feel a bit better. I think i misinterpreted the withdrawal over the 13 years I’ve been on pred and if I’d stuck it out instead of increasing the dose I may have got to a low dose a lot quicker than I did.

[PMRpro Ambassador in reply to Suet3942]

It is a mistake doctors make too - they panic and go back to a high dose instead of using a flare protocol.

[NellieDoodles in reply to PMRpro]

What is a flare protocol? My mum has been reducing her pred by 1mg every 4 weeks which has been working well but when she reduced from 5mg to 4mg 3 weeks ago she now has a flare. In a lot of pain in shoulders and neck. She went back up to 5 mg of pred a couple of days ago but still in a lot of pain. She is taking paracetamol aswell but not helping. She is going to up the pred to 6mg tomorrow.

We have no idea of how much we need to increase the pred. She doesn't want to increase it more than needed but need to get out of pain.

Thanks for any help/advise.

[DorsetLady PMRGCAuk volunteer in reply to NellieDoodles]

See this -and it’s only increasing the dose for a short while-

healthunlocked.com/pmrgcauk...

Did send it previously when you first posted about your mum’s PMR.

The odd one or two mg rarely works for a flare. Plus at such low doses your mum really needs to slow down her tapering -preferably 0.5mg a time and/or every 8 weeks rather than every 4 weeks.

As you reduce the Pred the percentage drop gets bigger so the body notices it more. A 1mg drop at 10mg is a 10% reduction -at 5mg it’s 20% and gets progressively bigger as you get lower. Once below 10mg, the recommendation is no more than 10% of current dose (to help adrenals as well) -and that gets more difficult to achieve as overall dose gets smaller.

[NellieDoodles in reply to DorsetLady]

Thank you for your advice. She's not had a flare since December, so uts been a while & I'd forgotten this what you told me previously.Thank you very much. I will tell Mum to increase 5mg.

[DorsetLady PMRGCAuk volunteer in reply to NellieDoodles]

No probs - hope it’s sorts things out for her. She’s done well so far, the last few mgs is very often the most difficult-less”spare” Pred to play with. Anything else just contact us.

[NellieDoodles in reply to DorsetLady]

Hi again,Following on from my last message when you advised mum to use the flare protocol.

She is now on day 13 of the flare protocol and wanted some advice on what amount of pred should she reduce back down to & when?

Just to recap - She had been reducing by 1mg every 4 weeks since May, which had been going well, but when she went from 5mg to 4 mg she flared. But she didn't respond for about 10 days, so I'm guessing that allowed the inflammation to really build up, before doing the flare protocol that you advised me she should do.

So 13 days ago she increased the pred from 4mg up to 9mg. It took about 8 days before she was completely pain free.

Tomorrow will be day 14 on the flare protocol dose of 9mg.

What dose should she reduce to and when? Any advice gratefully received

Thank you!

[DorsetLady PMRGCAuk volunteer in reply to NellieDoodles]

We usually suggest no longer than 14days on the increased dose otherwise a slower drop down is required.

If she is okay now [although a few extra days probably wouldn’t be a problem] she can drop back down to 5mg… and stay there for 3-4 weeks just to make sure all okay.

If she has plain uncoated tablets would suggest she [or you] halve them.. pill-cutters only cost a couple of pounds and any pharmacy or good old A**m*n sell them.

Much better as you get lower in Pred… and maybe add in a slower tapering plan as well. There really is no rush… and it’s easier to make sure a flare doesn’t occur as well as nudging adrenals into life - couple here to view - both work equally well,but whatever takes her fancy.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Good luck to her.

[NellieDoodles in reply to DorsetLady]

Thank you for your advice. Today was 14 days on the flare protocol so tomorrow she will reduce.

Thinking maybe if she drops down from 9mg to 6mg so she a bit higher than the dose she was last ok on (5mg)? And instead of reducing by 1mg every 4 weeks as she had been doing, perhaps a bit slower like 0.5 mg every 6 weeks?

She does have a pill cutter because we wasn't aware we could get tablets in 1mg size up until a few months ago, she prior to that she was trying the cut the 5mg size into 4! Now she has 5mg & 1mg size pills so much easier doing accurate dosage.

Thank you so much your advice, we really appreciate it.

[DorsetLady PMRGCAuk volunteer in reply to NellieDoodles]

That sounds good… 😊

[PMRpro Ambassador in reply to NellieDoodles]

I've nothing to add to DL's advice - hope it works.

[arvine in reply to PMRpro]

Is it possible prednisone can mask other disease ie osteoarthritis?as Ive posted chronic pain, joints, muscles all over body pain, tylenol even extra strength or tylenol for arthritis diesnt relieve pain, hurting all over, getting nerve blocks in spine for other issues , spinal stenosis, dd, buldging disks, and now ortho says severe arthritis in right hip, could benefit from hip replacement, have so much going on, overwhelmed

[PMRpro Ambassador in reply to arvine]

"Is it possible prednisone can mask other disease ie osteoarthritis?" - I think it has been said several times to you in the past. Usuall y though osteoarthritis pain responds to painkillers, pred is an incidental to apin relief in that. And if the ortho says you need a hip replacement - I imagine you need one. It can contribute to feeling pain all over.

[arvine in reply to PMRpro]

Thank you, well the omly painkillers I can take is tylenol, which does not give much pain relief , sorry if I have asked this before , maybe this condtion is affecting my memory as well, and was not aware my hip condition could cause pain through out body, I am going for my 2 nd session of guided ultrasound nerve blocks today, in spine, hoping this will help some of the nerve pain in groin and thigh

[Barbaracole in reply to NellieDoodles]

I am in exactly same position, after 6 years on pred.Now have access to Rheumatology dept.can t do anything till about 3 pm. They are sorting blood results and x rays to rule out arthritis as pain in neck shoulders arms hands bad .I am on 5 had gone down to 4 in agony so back up to 5, 8 paracetamol a day recommended by a doctor in surgery .they said after 4 years pmr will have burned out .Best of luck interested in your replies.

[MiniSpec in reply to Barbaracole]

I've had PMR for 15 years, so I think that whoever told you it burns out in 4 years is talking out of their a**e.

As for taking paracetamol, it's useless for any PMR pain. Only Pred will reduce the agony and the stiffness.

Last year I tried to reduce from 4mg to 3mg and then to 2mg as asked for by my GP. At 3mg I didn't feel too bad, but when I dropped (via 1/4 mg increments over a period of 2 months) to 2mg my neck and shoulders seized up on the 5th day of the 2mg.

So I went back up to 3mg and stayed there for the best part of a year. However, during that time I gradually became more and more achey and stiff. In the end I went back up to 4mg and now I can lift my arms above my shoulders, and do just about all the things I was previously able to do on 4mg.

So if you need 5mg you need 5mg, and reducing below that amount will just cause problems. It's a case of knowing what your lowest limit is, and it sounds like you've reached yours on 5mg. I seem to have found my lowest limit on 4mg.

Everyone is different, so our lowest limit doses will not be the same anyway, but I think you've found yours, so just tell the drs to leave you at your present dose for now, and you'll try to reduce when you feel up to it.

[Barbaracole in reply to MiniSpec]

OKay all very h elpful ! THankyou for going to all this rouble to tell me and other !

[PMRpro Ambassador in reply to Barbaracole]

"they said after 4 years pmr will have burned out"

I do wish they'd get up to date - the limited duration myth lives and breathes and it is just that. A myth. Increasing numbers of PMR cases lasting beyond 10 years and half last more than about 6 years. Like MiniSpec and me with 20 years.

There is a lady on the forum who was told to take maximum paracetamol for her hand pain as it couldn't be PMR, it was OA. A few weeks later she had a routine blood test and her liver enzymes were sky high - so high she was sent for an emergency liver ultrasound. It was normal - and the operator said she'd had loads of similar cases and all were actually due to older patients being told to take paracetamol, that oh so safe OTC medication.

[Barbaracole in reply to PMRpro]

THankyou so much for h warning will go down to 4 tommorow, still on 5 m,g . Pred till have x rays . I don't think it oesteo , the pain is the same P M R Pain.

[DorsetLady PMRGCAuk volunteer in reply to Barbaracole]

If you have plain uncoated tablets you can cut a 1mg to get 0.5mg, which is a much better way to reduce when you are on low dose. Many find 1mg is too difficult … and it’s above the ‘not more than 10% reduction of current dose’ often quoted .. Suggest you also use one of the slower tapering regimes.

Couple here-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Even it’s osteoarthritis, I’d try and cut back on the amount of paracetamol if you can. Maybe use Flexiseq or another form of topical pain relief.

[Barbaracole]

Thankyou Dorset Lady for all of that . When I see rheumatology after shoulder x r ays will tell her that . Today I will drop to 4 paracetmol a day .