Levels : How to suss out when to reduce again after flares.

[Lickle]

Hi All,

After my recent hiccup from 4.5mg , I'm now settled again at 7mg Pred.

At first my frozen shoulder pain was affecting the other shoulder in the form of stiffness and odd pains down the right leg in the ankle.

The original frozen shoulder seems to have subsided gradually, and I still believe that was caused by they way I'd been using my smart phone in some way causing a sort of Repetitive Strain Injury. The PMR aggravated the RSI probably and that started a minor flare.

I am now nicely settled at 7mg for about 10 days with no other pains, apart from the slight RSI.

My question is when to start reducing again and how much by?

I was thinking of waiting another week at 7mg then interspersing at 6.5mg every few days, gradually getting down to 6mg then back to the monthly reductions, filtering them in with 0.5mg reductions.

I guess its just reducing when the rest of my body feels good?

All comments are welcome of course.

[PMRpro Ambassador]

"I guess its just reducing when the rest of my body feels good?"

I think that is about right! Though I am not convinced by your RSI theory - I think a PMR flare caused it although once side was ahead of the other! You could drop quicker since you haven't been at the new high dose for more than 2 weeks but do you want to? But be a bit tentative as approaching doses under 6mg.

[Lickle in reply to PMRpro]

Thanks PMRpro, I'll wait until all shoulder stiffness has completely gone, probably in a couple of days. Then start doing 6.5mg and see how that goes.

[TandemTime in reply to Lickle]

I find your post interesting as have started on 6g 2 days ago. I have had 2 shoulder operations and suffer with neck issues etc. Following a car accident 30 years ago. Getting this low on Pred I notice a few 'war injuries' creeping back and have tried to put them in the "mechanical camp' with the help of the physio. We have named the pains "mechanical' and 'weird' ( PMR neurological) .

I presume the steriods are great pain killers and help with mechanical pain too but due to my terrible Dexa scan ( -4 for spine) I feel need to try to get to the lowest dose of Prednisolone without getting the weird pains back. However I think I know I must just put up and try and resist taking Prednisolone just for the mechanical pain.

[DorsetLady PMRGCAuk volunteer in reply to TandemTime]

Just looked at your last post which was 2 months ago in which you said you were at 10mg. I would suggest that to be down to 6mg now that your issues may be too low a dose for your PMR, and maybe not so much ‘old war injuries’.

Whilst it is true that some existing conditions [like arthritis] do raise their heads again on lower doses, Pred is not a general painkiller. And yes I know you are worried about your bone health, but being on too low a dose for your PMR will let that build up again if you aren’t careful.

Just a note on Physio, just be a bit careful with that as well, if your aches and pains are due to PMR as well as or rather than existing injuries it needs a gentle approach.

As you get lower on Pred it can sometimes be more difficult to reduce the dose - so maybe ease up on that as well. If you are still reducing 0.5mg every 10 days or so, then extend the time.

[PMRpro Ambassador in reply to TandemTime]

Pred is only a pain killer when the pain is due to inflammation. And if your dexa score for your spine is that bad - I doubt it was due only to being on pred and you require appropriate medical intervention there too which counters any effect of pred.

If you are doing physio - I hope they are fully conversant with both osteoprosis and PMR in the context of physio. Many aren't as well-informed as they might be as tangocharlie can attest.

At this stage, very slow tapering and also being aware that what you think MIGHT be mechanical pain but is relieved by pred is inflammation is important, There is no point being off pred but immobile due to the pain - that is also a risk factor for osteoporosis.

[TandemTime in reply to PMRpro]

Yes agreed I think it was multiple things that's why a Dexa before all of this could have helped me postpone osteoporosis.. I wish had one when I was 53 /55yrs but I never thought about it. Never crossed my mind, not easy when my parents did not live long enough to make me aware. Horse probably bolted a while back but Prednisolone will have aggravated the situation , ( but what life saving pills they are !)

I currently take Bonesto but it took 6 weeks to find something I could use. I am booked in for an infusion and will just have to cope with side effects as the stats don't look great for me with minus 4 ..

I am lucky it was the physio who suggested Rheumatologist intervention as the pain was always on both sides of my body equally plus as the day wore on I felt better. Whereas my mechanical things over the years I noticed get worse, as I get tired and are the same of things I have had for so many years. These do include tendinitis of my right foot which is inflamatory so I think the Prednisolone as a bonus helps there.

However that tendinitis does not seem to be the crazy horrible 3am pain that makes you unable to think how to even move out of bed. Which was my version of PMR waking up in terrible pain at 3am and being able to count 8 or 10 areas all over my body was the worst. My hips are reasonable and yet people asked if I was due for a hip operation if I saw them in the morning. Can't feel that stiffness at all now in my hips in the day and I no longer wake in any pain...

Amazing Prednisolone pills ! 😀

[PMRpro Ambassador in reply to TandemTime]

I had very few adverse effects with the infusion - the first time I did get a slightly fluey feeling for about 3 weeks, not the 3 days he warned me about, but it woke up the arrythmia I had just had an ablation to sort out!! That all faded after about 6 months though and this year I had absolutely nothing to complain about. One more to go and then I get a 3 year holiday from them. My husband with dreadful osteoporosis (never had pred except in oncology) was given the denosumab injections - never complained of side effects which was a wonder as, like his mother, if there were side effects on offer, he'd pick them up. Don't know if they worked a miracle though as he didn't live long enough.

[TandemTime in reply to PMRpro]

Sorry to hear you lost your husband early... that's very tough for you.

However I am glad you are making it through your 3 course okay.

I have been thinking hard since this am and will make sure I am really very good before any further drops of Prednisolone as sounds like I need to be on good form for this infusion whenever that might be!

[PMRpro Ambassador in reply to TandemTime]

He was 71, we'd been married 48 years, together over 50.

Really, the infusion is no big deal - takes about half an hour and you get up and go haome.

[TandemTime in reply to PMRpro]

That's a life time together, by anyone's standards ..🙂 Seems like you moved to Italy so I hope you are enjoying lots of the lovely food there and warm weather. Sunny here in the west country. Thanks for your help.

[PMRpro Ambassador in reply to TandemTime]

Not warm where I live - up a mountain in a ski resort. We moved here when he retired early from the NHS and worked freelance with a company in Innsbruck. I've been here fulltime over 16 years.

[TandemTime in reply to PMRpro]

Amazing. Bet you have seen some changes... husband just came back. I skied for 40 years when funds allowed. Lovely mountain air..

[PMRpro Ambassador in reply to TandemTime]

Not as many as you might think - but there have been more in the last 2-3 years than in all the time before, I've known the region for over 40 years.

[Lickle in reply to TandemTime]

Yes, the old war wounds do tend to show up again, rather like in cold weather. I was a rugby prop forward and also a car accident where my head was in collision with the rear window and frame of a VW Beetle, so do find some neck crepitus and those big shoulders getting the stiffness.Fingers were stamped on a few times also, so I expected some arthritis there, especially as an Author I'm always on a keyboard.

[DorsetLady PMRGCAuk volunteer in reply to Lickle]

Rugby prop and a collusion with a VW - talk about a glutton for punishment… my son was a prop.. and also a couple of grandson [not his, but nephews] - his son has taken a slightly easier route and plays No13.. As you can see a rugby family..great sport , but bruising for those who partake - respect to them..

[PMRpro Ambassador in reply to DorsetLady]

Glad I had girls!!! But the younger one eventually got the bug for watching rugby at least ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Don’t rule out girls.. although a bit late for yours.. my granddaughter played from about 7 to 11 years of age .. and probably would have continued after that, but school didn’t have a girls team - so she shifted to football. Now she’s older and wiser [😳] she’s ‘retired’ at the grand old age of 19…

[PMRpro Ambassador in reply to DorsetLady]

Oh I don't but I suspect her knees and other medical evils would rule her out!!

[Lickle in reply to DorsetLady]

That's why we're suffering now for the old misspent youth!

[DorsetLady PMRGCAuk volunteer in reply to Lickle]

Ah well, we all suffer from that… mine was hockey [amongst other things which perhaps shouldn’t be discussed on a Sunday morning…🤣😂].

Keep well.. and that’s all relative!

[PMRpro Ambassador in reply to Lickle]

My skiing knees are waving at me these days. But not the osteoarthritis the UK insisted I would develop.

[TandemTime]

Ooo you are kind keeping an eye on me 😍 haha . Appreciate I am have not followed the norm but have been writing my PMR diary every day to monitor everything... ( found that suggestion here invaluable which I did it at the start of this last year)

Yes I appreciate it's fast, I have been reducing 0.25 a tablet at a time more recently. I plan to go even more carefully from 6g down as that or 5g seems a big shelf for people on this site?

I do feel good about the PMR side, as a hot shower or a bit of physio does settle my symptoms or dancing round the kitchen after too much computer work really helps.

I do wonder if ( as I am a reactive person and relatively small ) whether a 10 mg dose initially would have been enough for me. I also think the bumps in the road I had at the beginning were from a fast reduction 15, 12.5 , 10 every 3 weeks.... I would in retrospect have gone down in half tablets I think at a time. My poor body had too many shocks!

That minus 4 on my Dexa has been a horrible stress, but is making me balance work and activity. The steriods I love for saving me must unfortunately have contributed. However with no base line Dexa who knows...

I have written to my MP to ask if she's had one. Her reply makes me think she's empathetic to getting everyone tested by 50 /55. As I think it would save the NHS a fortune.

I am now walking a lot more and family stress has thankfully calmed a lot which I think caused my last year PMR to rocket. I think its also shocked for me to having no more than 14 units a week of alcohol! I have always liked wine as hate most soft fizzy drinks but was drinking wine with supper every day to relax.

I saw a vet friend last night who has just retired. She was saying she has never managed to work out why Animals are given a high dose of steriods but once under control go every other day ( to kick start adrenaline) where as us humans keep reducing but take it every day. ..any thoughts on that ?

Thank you once again. I gain so much from your and others help here. I will be extra careful after your thoughts...😀

[PMRpro Ambassador in reply to TandemTime]

It is the adrenal side of things that benefits most from the slowly slowly approach at this stage!! You can reduce as fast as works for you - it isn't the speed that causes the flare but the overshoot. Trouble is, you don't know where that point is until you reach it andwhen you are going down were quickly it might be several doses later that you notice, long after the critical point.

They do use the alternate day dosing approach in other things but it doesn't work well in PMR/GCA and is specifically warned again for GCA. The half life of pred is about 2-3 hours, all the pred is out of your body in under 24 hours. The antiinflammatory effect of pred lasts longer than the half life and pred in the body but it still only 12-36 hours depending on the person so almost everyone will have symptoms returning in well under 48 hours. There are even loads of people for whom the symptom-relief doesn't last the full 24 hours and splitting the dose is needed. So there is the risk of inflammation building up before the next dose is due and that is not desirable, especially in GCA. I used ADD when I first started pred and it worked well for me but I had some double vision later and was instructed I must take pred daily, I never went back. I suppose I could try it again now I'm on Actemra. Hmmm.

Size plays some role - but not that much. A study on how effective a starting dose of 12.5mg would be found that 75% of patients obtained good relief from symptoms by 4 weeks on a dose of 12.5mg. The result was better in smaller women and less good in larger men. So yes, size can play a part but how many patients want to wait weeks to feel better? And for 25% it hadn't done a good job in that time.

[TandemTime in reply to PMRpro]

Thank you. Interesting to be reminded on these points. I will let myself catch up at 6g. 😀 with fingers crossed. Re the 12.5g. I new within 48 hours the Prednisolone was helping me and within 5 days I felt amazing. So I think in my case I could have been happy with a 12.5 start.

I will let my vet friend know... your reply.

Thank you.

[proactive in reply to TandemTime]

Just thinking, that animals can't communicate their symptoms........

[TandemTime]

Rugby Prop ! Woo not sure how you did that watching them !! Constant car crash 🤣 but appreciate the skill involved. Hope you are still managing to get to the gym.

[Lickle]

I was doing the gym at 15mg pred down to 10mg then even that caused a flare.

[PMRpro Ambassador in reply to Lickle]

It is possible to find things at a level that doesn't cause signs that might be a flare - though it is more likely DOMS because you overdid it. And it can take a lot longer to resolve than you are used to.

[tangocharlie]

My problems started with a frozen shoulder that spread to the other shoulder and the neck muscles in between. They were definately frozen as I had ultrasound scans that showed it. Somehow that morphed in to PMR and there have been many research papers written on how for many women frozen shoulders are a precurser and diagnostic of PMR. As to when and how to reduce all I can say is if you don't take enough Pred to manage symptoms the inflammation will probably just snowball, so you need to listen to your body. In the early years I knew nothing so did as told by my GP (who also sadly knew nothing as he'd never come across PMR before) and reduced too soon and too quickly, which left me in awful unnecessary pain. If I had my time again I'd have stayed on 10mg Pred for a lot longer time. You need to find a dose level that stabilises everything and then use one of the methods often mentioned in the forum such as Dead Slow to 'test the waters' and see if your body is ready for a lower dose. If it isn't there is absolutely no point reducing. Getting the right dose at any particular time is tricky and rarely if ever the straight line the medical textbooks would have doctors believe.

[TandemTime in reply to tangocharlie]

Thank you. I am listening hard !