Prednisolone Reduction

[Jomaur]

Sorry but I am unable to find the very useful advice about reducing Prednisolone. My lovely lady GP has asked me to have blood tests roughly every 6 weeks and if they come back with my ESR levels in the normal range to reduce my Pred by 1 mg. So far so good but a week ago I reduced from 4 mg to 3mg and since then have been feeling achey and more tired. Is 1 mg too much a drop at this stage please and if so how slowly should I be tapering. I have now been talking prednisone for about three and a half years. I am not being seen by a Rheumatologist but just by my GP.

[DorsetLady PMRGCAuk volunteer]

Do you mean the various slow tapering plans?

Here from FAQs - have a look through and see which takes your fancy -]

healthunlocked.com/pmrgcauk...

And suggest you try only 0.5mg a time from now on…

[Jomaur in reply to DorsetLady]

Thank you that is the info I was looking for. I must admit I did have my doubts about reducing so much at a low level but I know my GP is keen to get me off Prednisolone asap as it has been affecting my BP. In the last 6 weeks I have also had Radiofrequency treatment on my back for a Facet Joint condition but I am still in pain and two weeks ago I unexpectedly had to have a pacemaker implanted so wonder if my body has already taken enough without reducing my steroids as well.

[DorsetLady PMRGCAuk volunteer in reply to Jomaur]

Sorry to hear that… and yes slow down a bit. Your adrenals will also be needing some help following recent procedures…so maybe stay at current dose for a while and let them regroup.

All the best…

[Jomaur in reply to DorsetLady]

Thank you I was wondering about doing that as I was feeling OK until a few days after reducing down to 3mg . I’ll do that and email my GP to let her know what I’m doing as I’ll also need to adjust my next blood test date.Thank you for your advice.

[PMRpro Ambassador in reply to Jomaur]

A pacemaker is a pretty invasive procedure (I have one) and I think with all the rest - you possibly need more not less pred!!!

[Thelmarina in reply to PMRpro]

You are a miracle of modern science! You seem to have had everything thrown at you. But you are indomitable! 🥇xx

[Jomaur in reply to Thelmarina]

I wish I was!!!

[Jomaur in reply to PMRpro]

I have read something in the past about taking extra Pred when ill or having an operation but I’ve never been told that by a doctor.

[PMRpro Ambassador in reply to Jomaur]

Which is why the endocrinologists realised that too many patients with adrenal insufficiency were becoming unnecessarily unwell when their need for cortisol outstripped the supply their compromised adrenals could produce. And they compiled advice on Sick Day Rules and a second pred card for emergency situations and HCPs who were ignorant of the needs.

[piglette]

I dropped 0.5mg after I reached 10mg. On the other hand I am a tender little flower!! Your drop is a 25% decrease which is quite a lot.

[Jomaur in reply to piglette]

As you can tell from my reply to Dorset Lady I have rather been through the mill lately and feel a very fragile large flower!I am thinking of going back onto 4 mg for a week and then reducing down to 3.5 mg. I will either email my GP to keep her informed or if I don’t feel better make an appointment to see her. Thank you for replying.

[piglette in reply to Jomaur]

I would make certain you feel tickety boo before reducing, then as you suggest have a reduction of 0.5mg. I don’t understand these doctors who give us steroids then want us to stop them as quickly as possible, so people try and cut down quickly and it can end in tears and a lot of unnecessary pain.

[Jomaur in reply to piglette]

This wasn’t the doctor who started me on steroids as that was during Covid and apart from a few telephone consultations I was more or less left in my own to manage my dosage.The doctor I am now seeing at our practice is asking me to have regular blood tests to check my ESR levels as I also have pain from my back that confuses the amount of pain I am in from PMR.She is very approachable and I’ll let her know what I’m doing.I do agree with you about a lot of doctors who start people on steroids and then almost blame them for it!

[piglette in reply to Jomaur]

Do pain killers help? If so it probably is not PMR pain. If painkillers do not really help it probably is PMR.

[Jomaur in reply to piglette]

I don’t find painkillers help very much not even with my back although that has been diagnosed as facet joint pain and also the consultant reckoned I have some arthritis in my back. I did see a rheumatologist privately over a year ago who reckoned it was fibromyalgia and to take 2 Paracetomol 3 times a day and go swimming 3 times a week - this was in November! Obviously a very learned man!

[piglette in reply to Jomaur]

What did the rheumatologist base their diagnosis on?

[PMRpro Ambassador]

" Is 1 mg too much a drop at this stage please"

We think so - below 10mg the official recommended rate is 1mg at a time but many patients find that too much and 1/2mg is better. And the lower you go - the slower is our mantra. The 10% rule is a sort of general rule - and at 5mg, 1mg is 20%.

[Jomaur in reply to PMRpro]

In fact I’ve gone from 4 to 3 which is a 25% drop and obviously too much. Will go back to 4 and when I feel better go down to 3.5 which is a little more than 10% but the nearest it’s possible to get. Thanks for your reply.

[PMRpro Ambassador in reply to Jomaur]

Using one of the slowed tapers we talk about compensates for the high percentage change - slows the rate at which the body has to adjust. They are in the FAQs under Tapering.

[Jomaur in reply to PMRpro]

Thank you I have now read this.

[Flivoless in reply to PMRpro]

I reduced by 1 down as far as 5mg then 1/2mg thereafter. No down to 0 (2 weeks) and, I'm pleased to say, with no dramas - so far. ✊ I would take this opportunity to thank all at Health Unlocked for all the help I have received and the wisdom imparted to me. It certainly has made my PMR journey so much easier and I will continue to view the site to see how everyone else is getting on.

[PMRpro Ambassador in reply to Flivoless]

Thank you!

[Bcol]

I work on 0.5mg on a DL five week plan, but don't start the next taper if I don't feel it's right.

[Jomaur in reply to Bcol]

Sounds like what I should be doing.

[cmToddy]

I would suggest you reduce by 0.5mg rather than 1 every 6 weeks.

[Jomaur in reply to cmToddy]

Yes I was going to query this with my GP but because of my hospital stay it went out of my mind.

[EFCB]

I would get your ESR levels checked soonest and base on your leave copied to your previous result in the context of your symptoms consider going back to the previous dose your were fine on. After being of this dose for a further 4-6 weeks consider attempting to reduce again by no more than 1mg every 4-6 weeks

[Alazarin]

hello there, I was in a similar situation last month, the good people on here recommended the .5 drop and it’s made such a difference, in discussion with my gp, we agreed only .5 drops from now on, but staying put for at least two months, in between. I stayed on 3 for 4 months before reducing.

Good luck

[Gardenbay]

I would say have three one day then two and a half next day then back to three. Or just drop half a mg instead of three each day. I have been on pred about the same time never see GP or anyone else I’m now on 1 mg one day and half the next.

[Ruins67]

I was in the situation trying to reduce from 3MG downwards and never able to make it completely to 2MG. Always ended up in pain doubling the dose for awhile and then back on 3MG. I then did the Dead Slow Nearly Stop method which is one of those recommended. It actually worked. A few days I was achy I took two paracetamol only during the whole day and I was fine. I haven’t taken any paracetamol for over a week now. I intend to stay on 2mg for a good month before looking at reducing to 1MG. If that doesn’t work for any reason, I’ll look at reducing it by 0.5mg instead. .

[DorsetLady PMRGCAuk volunteer in reply to Ruins67]

Probably sensible to introduce the 0.5mg reduction anyway at such low doses… and many will testify it really does make a difference.

Why sound so surprised a slower taper actually works - something we’ve also been advocating for years…😊

[Polygolfer]

hello there, good luck with your tapering! It’s very individual and will depend on what other ailments you have, how much exercise you do, your age, loads of factors. I reduced by 1 mg every 6 weeks from 5mg (Rheumatologist advice) and it worked perfectly well. But then I wasn’t on steroids for that long (6 or 7 months) so that’s also very individual. Important to know that tiredness, achy muscles and joints can occur. Withdrawal symptoms also and these are very similar to a flare or the original PMR symptoms so easily confused…. Very misleading, careful! Listen to your body and I’d say err on the side of going slower and taking your time. It’s best to take a bit longer than yo-yo back and forth with steroids. But getting rid of steroids, IF YOU CAN, is the best thing you can do for yourself!!

[Italybound62 in reply to Polygolfer]

The question I have is if the withdrawal symptoms are similar to PMR and we can’t tell the difference, how will we ever get off steroids? Is there such a thing as 100% pain free reduction to 0?

[Polygolfer in reply to Italybound62]

So when I was transitioning down and away from Steroids that was the input I received from my clinical Rheumatologist and also from another Rheumatologist who is a member of my club (and who originally diagnosed me). Their input was that I would feel a number of things such as long standing aches and pains that perhaps had been masked by the Steroids, possible withdrawal symptoms, possible adrenal glands re-start symptoms all of which can be misleading. However, they said if those kind of symptoms manifested themselves or returned, to scale down on exercises and stretching etc to try over the counter painkillers and in any case to TRY and be patient and wait for at least two weeks. If things did not get better then to contact the rheumatologist office BEFORE reaching back for tge steroids. I just think it can be a tricky transition, will be different for everyone but deserves a bit of patience and tolerance in case it’s not PMR or a flare… tricky…

[DorsetLady PMRGCAuk volunteer in reply to Italybound62]

The aren’t always the same as the original PMR or GCA -it does vary from person to person.

For example on higher doses I just felt tired, bit short-tempered and apt to be a bit clumsy and dropping things -much like PMT -but knew it definitely couldn’t be that! Plus they usually only last 3 or 4 days maybe a little longer and then go as your body gets used to lower dose.

And yes for many there can be a pain free reduction -would say my GCA was. What I described above were niggles not pain. Having undiagnosed GCA for 18 months I can assure you I know what pain is.

[Gimme]

Loads of good advice already. Be careful, especially as you have a lot else going on. The drop from 3.5 mg to 3 mg is what zapped me at the beginning of the year, having been absolutely fine on 4 mg, and I am back on 6 mg again. And I was tapering very slowly. We are both different people, but it shows that a 0.5 mg drop really can be just enough to tip you over the edge. I think that you need to be sure that you are recovered from all the other health stuff and that you feel ready to make another drop.

[Jomaur in reply to Gimme]

Yes I think I was so keen to try and reduce that I just followed my GP’s advice without taking into account what I’ve been going through. At the time of her saying to reduce to 3 I was unaware that I would be having a pacemaker. In fact I didn’t know myself until the day before I had it done following a visit to A&E.I think I’ll email her and let her know what I’m doing so she can update my records.