TAPERING - CAUGHT BETWEEN THE 'DEVIL' AND THE 'DE... - PMRGCAuk

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TAPERING - CAUGHT BETWEEN THE 'DEVIL' AND THE 'DEEP BLUE SEA'

Rimmy
Rimmy

Greetings Everyone

I realise I am raising again possibly 'THE' (most) perennial' question we tackle here on the forum - that of the speed at which to taper. My particular problem - which I have mentioned here recently is that i have developed a rather insidious side effect of pred which I was not really aware of until recently - that of corticosteroid induced myopathy - which is affecting mainly my lower legs and hands. This would not necessarily be such an issue given the fact I am now tapering down again (currently at 22.5) after having to up my dose to 30mg for a recent flare of GCA if I hadn't simultaneously injured my Achilles tendon. This convergence - of the injury and having to raise my dose just reinforced insult to injury as the weakening of my muscles/tendons was likely induced by moderate-high or cumulative doses of Pred in the first place. The consequence of all this is that I have horrid nocturnal pain/spasms/cramps in the injured leg and am just managing to control this with overnight doses of strong painkillers so that my sleep is not completely destroyed. During the day I try to rest my leg but also keep it moving so I do not stiffen up too much - which can happen if immobilisation takes precedence.

Basically i feel everything is a fine line or a contradiction. Too little exercise or too much can be an issue and so I need to taper perhaps more rapidly or end up with a more serious form of myopathy which is potentially longer lasting and more difficult to ever reverse. So just how quickly should I taper down i am wondering ? My doctor thinks - that about 1mg a week should be OK and I feel this is sensible. I have been as low as 12.5 a few months ago - but sat at 15mg or thereabouts for about 6 weeks before I got to that point. I have only had the one 'flare' or 'relapse' in the 18 months since diagnosis - so hoping this gradual reduction will do the trick as I need to abandon Pred as soon as I can - I am also getting fed up with this tendon pain which is very 'nasty' at times.

Sorry to 'grizzle' as I know so many of you are far more stoic than I could ever be - but I am happy to also be able to sing the praises of my regular GP who when returning from a holiday was surprised at the treatment (I did and didn't get) in his absence and was so empathic when I burst into tears in our last consultation - (I've never done THAT kind of public snivelling before) ... Having a 'kind' doctor is such an invaluable thing ...

Best wishes

Rimmy

45 Replies
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I don't have PMR so feel unable to answer any questions you may have but I can sympathize with the Achilles' tendon pain. Mine is presently awaiting surgery. The orthopaedic surgeon wants to wait until I am at lower doses of pred as previously when I had a cast on for it, I had it taken off after a couple of days as my pred head wouldn't accept it and my muscle weakness couldn't handle the crutches. I ended up at 40 mgs again in March due to some symptoms coming back but was able to decrease quickly after that. I am currently at 6mgs and doing ok so far! I love to walk and wish I could but ankle makes me not be able to go far. I too have have broken into tears at the most unusual places and times when usually being such a strong person. I blame it on the prednisone lol. My friend says what are you going to blame it on when you are off the prednisone lol! I wish the best for you on this journey and hope things turn around soon!

Rimmy
Rimmy in reply to Mikb

Thanks Mikb

X

Daisychain12
Daisychain12 in reply to Mikb

How brave you are xxx

Oh Rimmy what a situation to be in. I have no expertise or suggestions but I send you my love and support. Linda xxxxx

Rimmy
Rimmy in reply to Daisychain12

Thanks so much Linda - I am actually feeling a lot better today after de-doldrumming myself with lots of dusting !!!

Daisychain12
Daisychain12 in reply to Rimmy

De doldrumming. I love it!!!! Well done Rimmy xxxx

Daisychain12
Daisychain12 in reply to Rimmy

Oh Rimmy. That post is five months old. Good job I didn’t know what was coming. Or conversely if I had known I could have done something xxxx

So sorry to hear this, Rimmy. I've been following you as we have quite similar circumstances. I was diagnosed with PMR around the same time as you and although I was never diagnosed officially with GCA, my rheumi, who wasn't the one who diagnosed me with PMR, suspects GCA based on the type of symptoms I had.

I was on 20mgs of pred for almost a year and have also been diagnosed with streroid induced myopathy. The good news is that since getting down to single digits of Prednisone, my myopathy symptoms have completely disappeared. I hope the same happens to you and the pain subsides.

Rimmy
Rimmy in reply to Gaijin

Hooray for you Gaijin !! - and so encouraging to read I may also possibly make my way out of this 'jungle' as you have. It is also interesting that some of the literature refers to 30mg being a kind of threshold point when people are more likely to develop this kind of myopathy - but it is also clearly related to cumulative dose(s) or just time spent taking pred. I shall keep the positive objective of those single digits firmly planted in my brain ...

Thanks

Rimmy

Daisychain12
Daisychain12 in reply to Rimmy

Rimmy I have it hovering in my mind. It’s scary as hell and to hear it can be reversed makes me sooo happy xxx

Daisychain12
Daisychain12 in reply to Gaijin

Oh!!! What wonderful news!

Daisychain12
Daisychain12 in reply to Gaijin

Gaijin I am thrilled for you. Even more so now that I know the hell of which you speak. Xxxx. How are you? I tried messaging you. I hope you are ok. Xxxx

PMRpro
PMRproAmbassador

I think you just have to try - you can taper faster if you are well above the dose you need to manage the inflammation but when it is GCA it is a more difficult balancing act. Has no-one considered seeing if you would qualify for Actemra if the steroids are causing severe myopathy?

I lost a lot of leg muscle bulk in just a couple of months on methylprednisolone - and I was never above 20mg. It has never been a problem with prednisolone or prednisone. However, it did return very quickly once I stopped the Medrol and switched to prednisone and then started to walk - slowly and a couple of hundred yards was the limit at the start and that on crutches (also Achilles problems) but it was enough.

Rimmy
Rimmy in reply to PMRpro

Thanks PMRpro - yes tapering with GCA is trickier I think and as far as I know Actemra is not available here as yet for GCA - and I am even unsure I'd want it without more 'evidence' of its efficacy and maybe other possible 'side effects'. So I am going to push the taper a bit faster than I otherwise would have - it's a real balancing act andIi know I may crash - but needs must and I may get 'lucky'.

PMRpro
PMRproAmbassador in reply to Rimmy

I think its efficacy as a steroid sparer is fairly well established by the GiACTA clinical trial. Its been used for RA for about 10 years now. And I think this says it has gained approval in Aus:

[DOC]Australian public assessment for Tocilizumab [Actemra] - TGA

tga.gov.au/sites/default/fi...

Jun 4, 2018 - Actemra is indicated for the treatment of giant cell arteritis (GCA) in adult .... Actemra was first approved in Australia in 2009 for the treatment of ..

It is a long read to find the various details...

Rimmy
Rimmy in reply to PMRpro

Many thanks for this substantial doc PMRpro which I will read carefully to weigh up possible pros and cons.

PMRpro
PMRproAmbassador in reply to Rimmy

It is definitely comprehensive!!! Happy reading.

Rimmy
Rimmy in reply to PMRpro

This is interesting about types of corticosteroid and associations with myalgia - I realise you are referring to the fluorinated and non-fluorinated varieties. As I have only ever taken Prednisolone 'in theory' my outcome should have been less likely - clearly there are other factors in play- such as cumulative dose level and goodness know what else .... Fortunately at least I can walk around OK most of the time but have to be VERY careful not to overdo it - you know/remember what I mean all too well I am sure ....

Thanks again

Rimmy

PMRpro
PMRproAmbassador in reply to Rimmy

I assume you mean myopathy? Myalgia is the pain.

For me I think it was the difference between fluorinated and not as it was only Medrol that caused problems. The methyl bit is supposed to improve the antiinflammatory effect - for me it just increased the side effects and even at 20mg didn't do a lot for the pain! But pred of either sort can cause muscle problems.

Rimmy
Rimmy in reply to PMRpro

Yes I meant 'myopathy' - I think I am also developing dyslexia - or maybe my brain is also a 'flaccid' muscle at present (LOL) ... side effect # 80 or something ???

X

PMRpro
PMRproAmbassador in reply to Rimmy

I think several years ago we'd decided we'd found another 2 side effects on top of the 82 that were claimed then - so yours must be No. 85 at least

30048
30048 in reply to PMRpro

You had mentioned once that decadron was hard to taper. I have found a new endrocronologist and she has dedided that my absorption rate was very fast and split my dose into three parts. I take .5 in the morning. .025 at lunch and .025 at dinner . That gives me a total of one mg spread thruout the day. So far it has worked. I feel good about getting down to at least an equivalent of 7. They want me to taper to 5 .i have so many other issues I fear doing it.

Hi Rimmy you should be able to do 2.5mg reductions until you reach 10mg, IF you have no withdrawal symptoms. then it will be by 1mg and .5mg as you get lower if you suffer, which you would do initially but never keep reducing if your symptoms linger for longer than a week. You'll have to wait until they have really settled, so you can't rush it I'm afraid. Listen to your body - it knows best. ATB.

PS: Dont' worry about the Grizzling it comes with the territory. You're in a lovely part of the world.

PMRpro
PMRproAmbassador in reply to Telian

I know lots of people who can't do 2.5mg at a time even at 20mg - it all depends...

Rimmy
Rimmy in reply to Telian

Thanks Telian for your suggestions and kind wishes !

I had difficulty...

Feel great sympathy for you having been in similar situation as you when on high pred for GCA. I started on 60mg two years ago and had extreme difficulty in tapering, but the side effects of muscle wastage in my legs and thighs was really frightening and of course you don't feel strong enough to do any exercises. But the good news is that by the time I got to about the 15mg to 12mg level the muscles came back again even though the only exercise I did was at max 30 minutes walking a day, although I did have a few sessions with a physio to try and strengthen my leg muscles, they miraculously appeared on their own!

As for the crying, like you I have been blessed with the most caring doctor who has held my hand all the way through, and at most appointments in the first year, I who never cries, couldn't help having a little weep!! Don't forget steroids do this to you - love them and hate them simultaneously!

I know very little about Actemra but although it is now approved by NICE for GCA in certain instances, having a flare is one of them, and it might be worth asking about it- what the side effects are I'm not sure.

I am now at 8mg and really struggling with tapering and also still very limited in my lifestyle so I think going on to Actemra is too late for me but I am going to ask about it at my next Rheumatologist appointment.

So very good luck to you and having a moan every now and again is very necessary - we are all here to help and understand it.

Sho Sho

Rimmy
Rimmy in reply to Sho-Sho

Thankyou so much Sho-Sho - hearing you eventually recovered so well is inspiring and gives me much more hope that I will not always be this way. I can see you well understand how tricky this all is and how surprising in a way as i was congratulating myself on a year and a half without any really explicit side effects. I now realise I was counting my chickens a bit too soon - but also that I am still more fortunate than many - including my own mother who lost eyesight in an era when they understood much less about GCA than they do now - and so I am grateful I can SEE - if in a rather 'blurry fashion.

Thanks so much again - I have taken 'heart' ... !!!

Rimmy

XX

Hidden
Hidden

Ohhhhhh Rimmy... Shall I buy a BOX of candles????

You do seem to be caught between a "rock and a hard place." To reduce, or not reduce? To exercise, or not to exercise? And then by how much? How often, At what degree of intensity????? Grrrrrrrrrr. I feel your angst. I wish I had something clever or intelligent to say or suggest, but alas I do not. Please know I keep you in my thoughts and prayers and hope God and the Universe find someone their own size to pick on!!!! ; )

xxxxx

Rimmy
Rimmy in reply to Hidden

Thanks Melissa - you are always SO warm, generous and kind - even when you are in a rotten place yourself - and it is truly really appreciated !! I WILL get over, round or through all this - just as YOU will - it'll take more than a miserable 'inconsequential' (well in the bigger scheme anyway) 'little' AI illness to put the likes of 'US' down Melissa - WON'T IT !!!?? Just a hump in the road of life and as always an opportunity to reflect on how much we usually have that is 'good' and of value and how fortunate we have been to have generally been healthy critters until now. So I have decided NO MORE snivelling for a while - onward and maybe upward or at least some - where --- I must admit I am feeling grateful to be as well as I am today with all my grandies and their Mum really sick at present with nasty flu - on water and icy-pole 'diets'. So what have I to complain about .... (just where did I put that glass of lovely South Island NZ Sauvignon Blanc/plonk) !!?? I say looking around ...

Love

Rimmy

XX

Hi. I had a painful Achilles’ tendon, and ignored it. I continued walking daily, but then I managed to rupture the tendon and was in plaster for 3 weeks non weight bearing, then a boot-type immobiliser for 7 weeks. I had weekly physio, and it has healed but I have to be careful. My other Achilles been painful too. I was on 10mg of prednisone when this happened. I have read that Prednisone weakens tendons and that care is needed in looking after them. I am tapering from 8 to 7.5 mg at the moment, so basicallly saying that even at this dosage, my Achilles still needs careful exercise. I hope you get on okay with yours. Sue

PMRpro
PMRproAmbassador in reply to Suedeshayes

Had you at any point been on a quinolone antibiotic? (Their names tend to end in -oxacin)

Suedeshayes
Suedeshayes in reply to PMRpro

Hi. No I hadn’t. I was also on strengthing excs from Physio. My orthopaedic consultant said that steroids do weaken tendons, especially the Achilles. More really needs to be written in the contre-indications of prednisone.

Rimmy
Rimmy in reply to Suedeshayes

Thanks for that information about your experiences with your Achilles. Quite a lot of the literature of have read so far suggests you need to be at higher doses for longer before this kind of thing happens - but clearly this is not so in all cases. I am trying to strike a balance and do some gentle exercise but recognise it is risky to do too much. I am sorry you have also had this nasty experience - I wouldn't wish it on anyone !! I hope you make a full recovery from 'everything' soon.

Best wishes

Rimmy

Suedeshayes
Suedeshayes in reply to Rimmy

Thank you. It seems a long road. X

You describe so well the dilemma in all of this disease. One goes along for weeks thinking this is going so well, what is the problem? Then change one thing (or don't change anything) and we are off and running with some new pain or weakness and try to figure out what just happened. Thankfully, you have a doctor who commiserates and treats you as needed. The muscle thing makes it so difficult to figure out the real culprit. My S1 difficulties were causing muscle problems on left side while, at the same time, PMR flare was causing problems overall. Finally tumbled and had to increase from 6 mg back to 8 mg. Then injection in S1 flooded my system with corticosteroid and every morsel of me reacted to that. (Don't tell me it only affects local area.) Anyway, trial and error and try to only do one thing at a time. Such a temptation to make multiple changes to get things under control, but then no idea what accomplished what.

You have already received such helpful advice above and I appreciate the question so much as I learn something with every read. Love the term "grizzle." Best to you and let's hope you are soon into a period of pain-free reduction.

PMRpro
PMRproAmbassador in reply to clieder

It isn't unusual for a patient to be diagnosed with PMR after having a steroid shot for a shoulder problem and then realising a lot of other aches and pains have disappeared - of course it gets into the system. Heaven knows what it is makes them think it doesn't. It may be a relatively low dose but it is enough.

clieder
clieder in reply to PMRpro

Let's call them professional myths!

I saw a very sympathetic doctor (locum) last week and she characterised it as the Catch-22 of PMR/GCA and steroid reduction and you now, of course have this painful additional problem.

I'm reducing very slowly using the DSNS method and have been on 9mg for a week and -fingers crossed - after my grandson's visit this coming week, will start slow descent to 8.5 - then the concern about adrenal insufficiency may arise as I've been on steroids for 18 years but will have to cross that bridge when I come to it. Who knew at first diagnosis all the problems and dilemmas this illness would bring?

Thank heaven for this forum and people who understand and the luck of finding a GP who does also. I do hope you feel better soon.

Dear Rimmy,

In answer to your Actual Question, I can't really say, other than...The Lower the Dose that, you are on, the Slower you need to reduce it. Once you start Approaching Ten Milligrams, slow the rate RIGHT Down....Maybe 1 mg, per month.

I'm sorry to hear, about your poor Tendon, Rimmy- rather 'rotten luck', I would say. Yes, the prednisolone, might have 'Weakened' it slightly but still......Ouch!

Sorry that I can't be more help Rimmy- interesting 'Name' that. Sending you Best Wishes anyway.

AndrewT

Rimmy
Rimmy in reply to AndrewT

Thanks AndrewT I do appreciate your helpful comments and 'sympathy' for my tendon (ha ha !!). 'Rimmy' is my forum name only - I borrowed it from our canary 'Rimsky-Korsakov' - who is aka 'Rimmy'.

Best wishes

from a 'non-feathered' friend !

I just read this. My poor dear Rimmy!!! I have been so consumed with my own myopathy I have not been supportive enough to you. I wonder how your pred reduction is going. Xxxxx

Rimmy
Rimmy in reply to Daisychain12

Oh Linda - this was a wee while ago and fortunately I have managed taper down to 12.5mg by now. the 'myopathy' is not any worse and not even really definitive - it could even be a minor form of neuropathy - anyway no worse. My 10 year old granddaughter who is very nature oriented and active - is staying with us at present and we had to take a very long drive (5 hours) to pick her up. This resulted in bad sciatic pain from all the sitting so I added 3mg for a day and that fixed that !! After she s gone I will be trying to taper again to 12 then 11.5mg - slowly does it. Overall though I am OK at present just with the usual fatigue when i overdo it - and that is too often with our orchard harvest also happening. I can't complain though MOST days pretty 'good' - touch wood !! Thanks for your concern - I know you have been having a rough road but I have just been too busy to reply to many of the posts I would like to have done lately .

Love to you

XXXX

PMRpro
PMRproAmbassador in reply to Daisychain12

Linda - before beating yourself up about finding posts you feel you should have supported, do look at the top of the post, just under the name of the poster, where it says how old the post is! This one is 5 months old. There seem to have been a lot of old posts resurrecting for no apparent reason - some have been years old!!

Rimmy I just saw again about you bursting into tears 😱😨😭😭😭😭

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