Hold out or increase the dose after a flare up / taper reaction ?

[Sydney0503]

Hi I was diagnosed (at 52 fit and active ) in Late Oct 20 - started on 15mg ... 5 weeks ...magic , then 12.5 2 weeks , 11mg 2 weeks and a 1 day old 1 new etc to get to 10mg by end Jan .

Then I started to try to get to 9mg with 1 day old , 1 day new etc building up and started to get shoulder burn , hips flexor tenderness in the morning and tiredness so went back to 10 mg just over a week ago .... still had issues .

Spoke to GP this week who really didn’t know much ... just kept saying “ oh that’s a good idea “ to whatever I said and he said go back to 11mg for 2 weeks , then 10 for 4 weeks and then just go straight to 9 . As I was feeling better that day and reluctant to increase ( especially as he didn’t fill me with confidence ) , I thought I’d hold out at 10 and see if I can restabilise.

Got some shoulder burn 🔥 but wanted to get opinions here on what’s best . I want to do the best thing long term to get off steroids but don’t want to just be deferring if I do need to go it . I’m finding it hard to read my body yet and know what’s a flare and what’s a tapering reaction ...

Thanks for any advice😀

[SnazzyD]

Hello, I don’t know how you were ‘sold’ PMR but it isn’t something is zapped by Pred and you get off steroids pronto. The reduction is meant to be at a pace with your autoimmune activity and since we don’t come with an inflammation meter, it is down to guesswork experiences of others. Generally it takes some years for it to burn out, so it does sound like you’ve gone past the dose you need to control your current level of inflammation. If it was me, I’d go back to the dose where you were truly comfortable, give it a couple of week and then reduce by slowly adding on the new dose. Many people find alternate day dose changing is too much of a fluctuation for comfort. Also, under 10mg I reduced by 0.5mg drops, again introducing the new dose slowly over a few weeks and then slowing right down as I got to 5mg. Another reason you don’t want to be reducing fast under 10mg is to allow your adrenal function to return, but that’s another story to come after you’ve got this under control. Others who are more experienced will be along to give their penny’s worth with more detail.

[DorsetLady PMRGCAuk volunteer]

You’re only a few months in - so don’t try and push it too quickly.

In this instance your GP has given good advice.... so do as suggested ...but maybe rethink the drop from 10mg to 9mg. Official recommendation below 10mg is 1mg every 4-8 weeks depending on patient and illness. Some can manage 1mg every 4 weeks, but not everybody. ... so might be worth considering 0.5mg every 4 weeks.

Doing smaller reductions and a slower taper should make life easier and less likely to flare.

Steroid withdrawal comes on virtually straightaway on new lower dose, and lasts 3-4days - longer than that and you are probably into a flare situation.

You will get off steroids - but nobody can tell you when exactly - and it depends on your illness - not you nor your doctor.

Accept that scenario and life becomes easier.

You might like to have a look at this - healthunlocked.com/pmrgcauk...

[piglette]

From bitter experience I have discovered that once things start to go belly up it is a waste of time trying to live it out, PMR will always win. Check for a few days and see how it goes but if you need to increase, increase! Below 10mg reduction does get more difficult, I just reduce 0.5mg at a time but I am quite a tender flower when it comes to reducing!

[HeronNS]

In my initial months on pred I was able to drop as the doctor said after a few weeks at 15 mg by 1 mg per week until I hit 9. This resulted in gradually increasing PMR symptoms. I returned to 10 for about three weeks then started using the Dead Slow Nearly Stop method. This brought me smoothly and uneventfully to 3 by the end of the first year on pred. I was doing other things, too, mostly related to diet and exercise, and I have always felt that low level light therapy (google bioflex toronto) which is unfortunately not widely available outside North America helped as well. Turns out that 3 was not far off the mark from what turned out to be my "lowest best dose" of about 2, where I've been hanging around for several years. We are not heading relentlessly to zero but aiming to find the lowest dose which continues to control PMR symptoms. At some point nearly everyone is able to achieve zero pred, but patience is the key, and is not attainable until PMR goes into natural remission - we have no control over that.

[PMRpro Ambassador]

One approach - if 10mg really was enough - would be to add 5mg for a few days to get back to pain-free and then drop straight to 10mg. However, I doubt you are ready for9mg yet so don't push it.

The DSNS approach has been mentioned:

healthunlocked.com/pmrgcauk...

and this might also help:

rcpe.ac.uk/journal/issue/jo...

It is the tapering approach developed by the Bristol UK rheumatology group and published to help GPs manage their PMR patients better without having to ask a consultant all the time. They keep patients at 10mg for a year - and found it reduced the flare rate in that first 18 months from 3 in 5 to 1 in 5. Now whether everyone needs to stay at 10mg for that long is another matter - but it does show that in the first 18 months patients need more pred than a lot of doctors imagine. One of the worst things you can do is get into a yoyo pattern of dose - it just makes it harder in the long run.

[HeronNS in reply to PMRpro]

That being said I'm very very happy I never needed to stay at that high a dose for anywhere near that long. A lot depends, I think, on body size, efficiency at metabolising pred, and external influences, like stress, nutrition, exercise. Some of that's under our control, some not. We do what we can. Given that it took a pandemic, an injury and sheer stupidity on my part to have a true flare after nearly five years at or near my lowest best dose, it seems my first year tapering was not too fast. We are all different. (Other flares were always elicited by attempting to reduce too low, at least once at the behest of a doctor, very easily sorted, and the latest one not helped by medical advice either, although I think I must already have been flaring when he told me to try to get to 1.5 before having next set of blood tests. Hence the mess I've been for several months. Much better since physio and I changed our focus from treating knee back to PMR )

[PMRnewbie2017]

Hello and welcome. I can't add much more to the good advice others have already posted. I will however encourage you accept your new reality and lifestyle that comes with having PMR. That is, it is not a short term illness. The medical textbooks still describe PMR as "an autoimmune condition characterised by an overproduction of Interleukin-6. It most instances it goes into remission within 2 years". The reality is different. Currently the average length of time a patient will need steroid treatment and become free of the illness is 5.9years. Men seem to have an easier time of it than women, so you may be one of the fortunate ones. I don't say this to worry or upset you but one of the biggest mistakes I made was to reduce my steroid doses too quickly, thinking that I would beat it. I also allowed myself to be pressurised by my Drs. PMR always wins. Unfortunately, and paradoxically, going to war with it, may make it worse, because PMR loves stress and internal unrest!This really is a tortoise and hare situation. Go slow and steady and learn how PMR affects you. The sad reality is that a flare-up of PMR will require an increased of dose of Pred to get it under control. Future, subsequent flares often need even more to achieve the same result. On a positive note, there are worse illnesses than PMR and if you learn how to manage it, you can still do a lot.

Me: PMR and ?GCA Nov 2017 aged 59, continued to play tennis, golf, dog walk and gardening etc but at a more gentle pace!!!

[Caloo650]

I live in Sydney and was diagnosed with PMR and GCA a year ago. I have got a good rheumatologist Peter Youssef near Prince Alfred hospital and he has me on a slow taper.I am on 7.5mg atm. I hope to go to 7 soon. We are trying 1mg month but after a slight flare I have decided on 0.5 a month. I want to be able to continue my present lifestyle so don't mind easing into the pred dose this way.