increase in pain and stiffness on reducing pred

I had to increase pred up to 15mg after recurrence of symptoms on reducing too quickly from 20 to 10 mg. Reduced now to 12.5 mg after 3 weeks on 15. Have been on new dose for 8 days but don’t seem to be adapting. Have increased pain and stiffness which lasts all day and a frozen left shoulder. Also getting joint pain in hands, wrists, hips and knees. Appreciate advice

[DorsetLady PMRGCAuk volunteer]

Think you probably need to go back to 15mg -stay there until you get relief.

As you’ve had issues previously I would stay there for 4 weeks before considering a taper -and then 1mg a time.

2.5mg might be suggested in guidelines, but not everyone can manage it -especially if they have had previous hiccups.

However you do need to discuss with your doctor-they may not be happy, but they do need to know you are struggling.

[Hidden in reply to DorsetLady]

thank you will see if I can get a phone appointment tmr with doc

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Hope so, and you do need to impress that their way is not working. That’s not your fault -you’ve tried it, so suggest perhaps you could try it your way and see if that’s more successful.

[Hidden in reply to DorsetLady]

Doc is very reasonable got an appointment tmr but I think I will just increase back to 15 tmr and hope it kicks in for work on Thursday otherwise going to struggle but colleagues and boss very supportive Thank goodness for this forum lifesaver 🤗🤗

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

..agree with PMRpro - if 15mg doesn’t cut the mustard, you may need slightly more, so just bear that in mind. Maybe also discuss with GP….

[PMRpro Ambassador]

You've overshot, the dose isn't enough to manage the inflammation and it is building up. Sort yourself out at 15mg and then try a 1mg taper. You have had your warning - at the present "your" dose is less than 15 (hopefully) but still more than 12.5mg. If you try to force it, you may end up finding the amount you need gets higher and higher - don't get into a yoyo pattern where every fail sends the dose you need higher and higher. It took me over 4 years to get below 10mg and I'm by no means alone.

[Hidden in reply to PMRpro]

thank you for the advice. My body seems to agree with what you are saying will speak to doc tmr see if he’ll let me go back to 15 and taper more slowly. Certainly felt better at 15 but not symptom free particularly after my two days work weekend usually nonexistent due to pain and stiffness

[PMRpro Ambassador in reply to Hidden]

Have you been higher? If 15mg is not quite enough ... If the inflammation isn't entirely cleared out it makes subsequent tapering harder.

[Hidden in reply to PMRpro]

Started in 15mg atypical response so went up to 20 was on that for 3 weeks I think then tapered by 2.5mg a week to 10 mg when I felt awful slipping back down the rabbit hole. So up to 15 for3 weeks on rheumy advice via GP

[PMRpro Ambassador in reply to Hidden]

What was atypical? Our experience is that what doctors call atypical is probably the experience well in excess of 50% of patients. Which begs the question - isn't that pretty typical?

[Hidden in reply to PMRpro]

I didn’t respond as quickly to pred as expected and dose needed to be increased but after reading experiences on this site I don’t think I’m unusual and that there is huge lack of understanding of the condition by the medical profession even the well informed which my doc is. Needs more research but as it’s an ‘old persons ‘ condition probably not going to get high priority despite its high incidence

[PMRpro Ambassador in reply to Hidden]

Oh we have a few well-trained friends in the field!

Suppose it all depends what you expect - there are people who respond to 15mg in hours but we are the exception. Doesn't mean the journey is any easier mind - I could move 6 hours after taking 15mg but 18 years after it first appeared and 13 1/2 years after that pred dose, I'm still here. The 2015 Recommendations are far more realistic - starting dose the lowest effective dose in the range 12-5 to 25mg, exceptionally 30mg, is far more likely to get you off to a good start. This isn't a one-size-fits-all homogenous condition. If only it were!

[Hidden in reply to PMRpro]

thanks I really appreciate all the support and information. My doc said it burns itself out in a few months just as well I have sense of humour 😆😆 you take care you are doing an amazing job

[PMRpro Ambassador in reply to Hidden]

Anyone who claims a few months is in cloud cuckoo land and hasn't even googled a disease about which they obviously know NOTHING!!!

[herdysheep]

I am another who reduced too quickly in the early stages and had to deal with flares. Not just physical - but also affects how you feel - being set back. Since I started crawling in tapering it has been much more successful. I am fairly sure the early rush has led to this joyous disease staying around longer than necessary.

[Hidden in reply to herdysheep]

thanks I do feel I’m getting worse each day and quality of life not good so slowly it it 🤗

[autumnlass in reply to herdysheep]

So true herdysheep!

[HeronNS]

How long were you on 20 mg? And by how much did you taper to get to 15? There are many who find it difficult to taper by more than 1 mg at a time, even from 20 mg. Our rule of thumb is not to taper by more than 10% and 2.5 is actually more than 10% of 20. Have a look at the slow taper plans developed by patients (you'll find the link in the pinned FAQ post). A slow taper will still allow you to reduce on a monthly basis, but much more slowly. And as PMRpro said years ago, and I endlessly repeat: "It isn't slow if it works".

My experience: started at 15 mg (miraculous "cure" by third morning) and I stayed at that dose for 5 weeks. I was able to reduce by 1 mg a week to 10 mg (lucky I guess) but at 9 I felt returning symptoms, so back to 10 for about three weeks, then started the Dead Slow Nearly Stop taper plan. I did ask my doctor what she thought and she approved, but I was going to follow it anyway .

[Hidden in reply to HeronNS]

3 /4 weeks on 20mg I think but no miracle cure had one day 3 weeks ago after 2 weeks back on 15mg when I felt elasticity come back into joints and muscles first time in 5 months but it had gone by next day Going to speak to doc today about tapering more slowly. Have discussed methotrexate with him but neither of us too keen

[HeronNS in reply to Hidden]

If your diagnosis of PMR is correct, you cannot taper at all unless your symptoms are at least 70% better than before your diagnosis and starting pred (that is the low end of what you should expect from pred, most will do better than that, but not everyone). When you taper it is very important to maintain at least that level. You may indeed feel a few days of "pred withdrawal", especially if you are not using a slow taper but dropping the dose from one level to another overnight, but that should ease within a short time - three or four days at most. If you find matters getting worse, then time to stop the taper and return to to the last dose. That's why a very slow taper in small steps is helpful because one is much less likely to overshoot the level which is needed, and easier to recover equilibrium and not have a flare.

When I started pred I was not told it wasn't a cure. Because I had such a miraculous response and my first few tapers were so seamless I thought I'd be done and dusted in three months! I learned We use pred to manage the symptoms and enable a decent quality of life. Eventually PMR should go into remission and only then can we taper off completely,

[Hidden in reply to HeronNS]

thanks useful info. Chatted with doc and back up to 15mg with possibility of higher if needed. Also going to increase to 17.5 in days I am working to see if that reduces symptoms on Saturday still struggling to get blood sugars down and increase in pred not going to help. But doc happy to go with what I feel as my CRP creeps up in line with my symptoms and also agreed slow taper as per forum over 5/7 weeks doable. Getting a balance and still having a life difficult but learning. Can’t believe how little I can do now. Was pretty much superwoman before🦸‍♀️ Perhaps it hits harder if you’ve been very active🐌🤗

[HeronNS in reply to Hidden]

You have no idea how common your reaction to the sudden limitation of ability is amongst us! I feel it comes with the territory, how we were for the most part active, pretty healthy for our age, individuals. Learning patience and acceptance was a big part of my journey and I suspect for many if not all of us. One good thing - PMR isn't fatal, and there is a treatment which works, albeit we have to use it with respect! As other have said, if one has to have an autoimmune condition of chronic pain, PMR is the one to get!

It sounds like you have a very sensible and kind physician. That will help immensely, especially as he understands the extra stress work can place on one.

[Hidden in reply to HeronNS]

thank you for your support I have found this forum hugely helpful and have been able to go to docs armed with knowledgeable confidence gleaned from everyone’s input. 🤗

[Meggsy]

Hello Angry Birds - I needed 25mg at the start as 15 mg didn’t cut the mustard. Stayed there for 4 weeks then 2.5mg each time to 15. From 15mg to 10 I tapered 1mg per 4 weeks. From there I could only do 0.5mg drops. Presently slowly doing the slow taper from .75 to .5mg. It’s been a slow haul (almost 5 years) with only some minor glitches along the way. QOL is important.

I hope it all works out for you. 🌻

[Sew_And_Sew]

I'm in the UK.

I'm also 69, started on 15, then after six weeks reduced to 12.1/2. Another six weeks 10.

I haven't been perfect on 10 but only twinges. Seeing my GP this month to discuss if I should reduce again yet or not.

This illness needs time to let us go!! So slowly slowly is the way forward with the prednisolone.

Please discuss with your GP though.

[HeronNS in reply to Sew_And_Sew]

If those twinges are not going away, it might be wise to pause for a while. Your taper has been fast. From 10 mg it's a good idea to taper by only 1 mg at a time and, as one progresses down, half a mg is better, provided you are able to cut your tablets (coated pred must not be cut). The aim is to find the lowest dose which manages the symptoms at least as well as the initial doses did, when you felt at your best. As I got into really low doses I was tapering every six weeks. I wasn't able to get to zero (tried, didn't work) but have been at or near 2 mg for several years, with the exception of one rather serious flare. Haven't given up hope of zero pred yet, but at 2 mg, or thereabouts, there are really no pred side effects of note.

[Pawscat11]

When I was diagnosed I started on 3 days at 30mg 3.5 years ago and still cant get below 10mg. atm on 13.75 on slow taper. 2.5 drop after 15mg is far too much for me so I cut a 2.5 in half to enable me to make up to get 13.75. after any flare ( covid twice) I need two weeks at 20mg to be able to reduce again. We are all very different and I have learnt not just to accept pain and suffer but take the pills. I too have to work so its not so easy to do the rest slow down thing.

[Hidden in reply to Pawscat11]

thank you for sharing 🤗

[Hidden in reply to Pawscat11]

sounds like you’ve had a struggle but it’s good to hear how others deal with this take care

[Colleen1974]

Angrybirds, this is a really timely post. Started at 20mg in Sept and easily dropped to 10mg but now I'm in pain there especially the mornings. I have split dosed and nothing works. I finally feel human at 4pm. I did have Covid in December which didn't help. Think I will move back up to 11 where I was pre-Covid and happy and stay there for a while.

[Hidden in reply to Colleen1974]

hope that works for you 🤗

[Pawscat11 in reply to Colleen1974]

You might need to go a bit higher to go back down to clear residual inflammation first. Say 15 for a week then to 11mg.