Prednisone taper

[Bro-]

How do you differentiate a prednisone taper symptoms from your poly myalgia symptoms I tapered on Tuesday and my hips and shoulders are killing me and I feel flulike I want to get off prednisone but I just don’t know if it’s because of the taper or the poly myalgia coming back

[SheffieldJane]

That does sound quite extreme. How much have you dropped by and from what dose? How long have you had PMR or GCA? This information will enable more helpful replies maybe. I found that Pred withdrawal responded to painkillers and only lasted a few days. A flare just carried on getting worse and only responded to more Pred.

[LemonZest11]

I just experienced this recently. I tried pain-killers which were ineffective so I upped the pred for a few days and bingo, relief! I am back to just 1 above where I was, which was 4mgs, now on 5 and feeling fine. Pretty much what SheffieldJane said.

[Hidden]

I suspect you have reduced your dose rather than tapered. I only have my own experience to go on and tried reduction IE lowering the dose and the PMR gradually gets worse I have successfully tapered and have reached 6mg from 15 by going really slowly this week I am just starting to taper again alternating 5 and 6 mg's I will so this for a month and in January go to 5ngs a day anything quicker has caused me pain I excercise a lot but because I am tapering as described I will reduce my excercise at the same time I found reducing PRED requires a reduction in excercise to allow the muscke time to recover in summary I reduce half an mg a month so if I remain stable on 5.5 mg for the month I will go to 5 mgs in Jan at this planned rate I will be off PRED by Xmas 2021 Watch this space.

[DorsetLady PMRGCAuk volunteer]

General advice -

Steroid withdrawal v flare

Steroid withdrawal (or body getting used to new lower dose) usually shows immediately new dose is taken - and lasts between 2-5 days. It varies from a general feeling of being off colour to a return of symptoms pre diagnosis. For some it can be eased by paracetamol.

A flare happens when you’ve gone below the level of Pred your illness requires, and take anything from a couple of days up to 2 weeks to materialise- and (usually)the symptoms are similar to those pre diagnosis. Paracetamol will not help. The only thing that does is an increase in dose. Sometimes a return to previous dose is enough, but if it’s got too bad then it’s recommended to add 5mg to the dose you last felt alright - stay there for 5-10 days and then drop back down to just above the dose you flared. Stay there for 2-4 weeks to make sure all okay before you try and taper again.

[sailboatstewart in reply to DorsetLady]

Sailboat StewartHaving taken your expert advice back in March this year having had flare up of PMR. I started on 10 mg then split the dose to morning and night which gave me great relief. Then in October I started to reduce the dose of pred by 1mg per month. Now taking 7mg 2 in the morning and 5 at night. Daytime is ok but at night the pains in my shoulders and thighs are returning thus interrupting sleep to 5 hours a night. I take a sleeping pill zopicone 3.75 mg tried to come off them but to no avail been on them for 3 years.

Obviously I am keen to reduce taking pred having tried it before . Should I increase the dose back to 8mg per day and the reduce say by half a mg per month

Three weeks ago my right knee stiffened up and is giving me a lot of pain I have had to cut out my daily walk. Painkillers are not helping . I expect this is arthritis and nothing to do with PMR . Have a telephone app with GP this week and I will ask for an exray.

Your advice once again would be appreciated .

[DorsetLady PMRGCAuk volunteer in reply to sailboatstewart]

Hi,

Yes to 8mg, yes to 0.5mg per month providing no return of symptoms, and yes to X-ray.

Just make sure 8mg works though- if not, you might need a few days at 10mg to “mop up” increased inflammation- then you should be able to drop back down to 8mg.

You might be keen to reduce, who isn’t, but if your illness needs 8mg, it’s needs 8mg! Plus you are getting into the “adrenal glands need to awaken” syndrome, and that sometimes makes life a bit more tricky.

Might find a slow taper like this - helps as well - healthunlocked.com/pmrgcauk...

I find this helps my arthritis - not cheap, but worth it - cheaper on well known site beginning with A -

sensiwellness.co.uk/cbd/

[sailboatstewart in reply to DorsetLady]

Many thanks once again for your reply much appreciated

[PMRpro Ambassador]

Going from every day one dose to every day the lower dose often upsets the body, especially if it is a relatively large drop - slowing the reduction step down is an important part of tapering and reduces the effects for most people.

A summary of all the options we talk about:

healthunlocked.com/pmrgcauk...

and

healthunlocked.com/pmrgcauk...

explains the thought behind the concept too.

[Hidden]

What was your original dose and how fast have you reduced ? Everyone on the Forum, especially those that are really experienced know it's only safe to go slowly, slowly....even if it's by 0.5 mg like I'm currently doing. 10 mg one day and the next 9.5 mg the next for the whole month. Then following month 9.5 mg one day and 8.5 mg the next.

Good luck

[Lafontainepam1]

After having PMR for 9 years, my best advice is taper only 1/2 milligram a month. Be patient, it’s the Best way! Anything below, 7 milligrams is more difficult.