Balancing symptoms and pred dosage?

[MrsPMR]

Hi - MrPMR started on 20mg of Pred last Tuesday, had the typical 'spectacular' response, and went from barely walking/not able to turn over in bed, to being able to move with good fluidity and no pain. In the mornings he wakes up with stiffness, but can get out of bed, and move around, some pain (especially in the shoulders). This wears off once he's up and moving and the steroids have kicked in. My question is, given that prolonged inflammation causes damage, and that unnecessarily high steroid use worsens side effects, is there a rule of thumb about symptoms versus dosage? Should he expect to be free of all symptoms 24 hours a day, or should he expect to experience some limitations?

[Charlie1boy]

Hi,

Your husband’s response to 20mg pred is similar to my own. Bear in mind, firstly, though, that we all react differently.

In my case, it transpired that the relief from the pred didn’t last a full 24 hours ( I seem to recollect a post from PMRpro a few years back that the effect can be anything from 12 to 36 hours. She will correct me if that’s wrong).

My GP realised I was still in some discomfort after three days at 20mg, and decided to up my dose to 30mg to clear out all the built up inflammation; this may have been a bit over the top, but it worked. I stayed at 30mg for three weeks before coming down to 25, after which I was able to taper slowly down. I never sought to reduce if I was aware of any pmr symptoms.

Hope this helps a bit.

Good luck.

Paddy

[MrsPMR in reply to Charlie1boy]

Thank you Paddy - really helpful - especially the idea of clearing out as much of the inflammation as possible - which fits with so much as I've read. We should be checking in with the GP tomorrow so we'll take it from there.

[Charlie1boy in reply to MrsPMR]

Good luck. 👍

[paulus65 in reply to MrsPMR]

I had exactly the same experience as Paddy. Now on 1mgs after about 5 years.

[Jadaboo4 in reply to Charlie1boy]

Does your husband take it as one dose or split it between morning and night?

[Charlie1boy in reply to Jadaboo4]

In the early days of pmr, I took the pred as one dose. Latterly, after a year or so, I did experiment with split doses, but, to be honest, I didn’t feel it made much difference.

Paddy

[Jadaboo4 in reply to Charlie1boy]

Oh okay. That was suggested to me by my doctor and it did help. The only thing that irritates me is driving. It makes me so sore. Do you have that issue?

[DorsetLady PMRGCAuk volunteer in reply to Jadaboo4]

It makes me so sore.

That indicates you aren’t on enough Pred… and where does it make you sore… hips? shoulders? all over?

[Jadaboo4 in reply to DorsetLady]

Hips, legs, arms, thighs and wrist and hand starts to swell. I’m currently taking 30mg a day

[DorsetLady PMRGCAuk volunteer in reply to Jadaboo4]

If they swell -then would questions it is all down to PMR! Especially if you are on 30mg.

[Charlie1boy in reply to Jadaboo4]

Only prior to diagnosis, when the back of my thighs were extremely uncomfortable.

[MrsPMR in reply to Jadaboo4]

At the moment he's taking it as one dose, but we will experiment with splitting and see how that pans out...

[DorsetLady PMRGCAuk volunteer in reply to MrsPMR]

In my opinion, and it is only that -at the beginning you need to stick to one single dose in morning to ascertain if that dose is enough.. otherwise it can muddy the waters for the doctor. The initial dose is still part of the diagnostic process.

If your husband doesn’t get a satisfactory result in the first few weeks, then there are options to be considered.

Does he require a higher dose?

Is he trying to be too active and therefore not give the dose of steroids a reasonable chance of controlling the symptoms?

Does he actually have PMR?

[PMRpro Ambassador]

If the effect at 20mg isn't pretty much 100% in terms of PMR symptoms after a week or two, it would be sensible to try 25mg as C1boy described - it is so much better to clear out any accumulated inflammation at the start to give a good basis for the tapering that follows to find the correct dose for him and his PMR. There is no general correct dose - you titrate the dose to find YOUR dose. Not everyone gets 100% relief and what they look for at the start is 70% global improvement quickly. But some inflammation pain takes longer to clear out than other. Then once you have got the best result you can, you take that as your guide and aim to maintain that as you taper - never feel worse at the end of a taper step than at the start.

It is also important at the start to adjust lifestyle - being on pred isn't a free pass to go back to previous levels of exercise and activity. The muscles are being attacked by the underlying autoimmune disorder and the pred doesn't do them many favours either despite removing the inflammation. They may not tolerate the activity level you had before and you need to start from scratch with exercise, building up slowly to identify what you are capable of now. It is possible to build up quite far for many but everyone is different and some previously very fit individuals who have tried to exercise their way out have ended up in a mess.

Each day's new batch of inflammatory substances is shed in the body about 4-4.30am. From then until the new daily dose in in the system, these cytokines are working at creating inflammation. If the antiinflammatory effect of the pred doesn't last a full 24 hours for you, then some inflammation will have got hold until the next dose arrives and you will feel symptoms. One approach is to take pred at 2 or 3am - ready and waiting in the system at 4am and the cytokines are taken out at source. Another approach is to split the dose, taking about 2/3 in the morning and the rest later enough to extend the duration of the effect without affecting sleep - often lunchtime is late enough.

And there are some pains that remain, not managed by the pred - and they may not be due directly to PMR, Everyone has to get used to "their" PMR and how they react to pred - because that is a skill that is very useful to identify flares in the future.

[MrsPMR in reply to PMRpro]

Thanks PMRpro - such a wealth of info, you're providing a great resource and support system to people. We've switched back to eating an anti-inflammatory diet, which was our way, until we returned to living in the UK. He's been on some gentle, his pace, walks, and he's doing a good job of setting himself up for the long haul. We'll check in with GP tomorrow - thank you.

[Charlie1boy]

And just as a brief follow on from PMRpro’s reply.

I got the same advice about the best time to take pred, and, for a while, until matters were under better control, I took my pred at 2.30am It was a bit of a faff, but it did work well,

Paddy

[PMRCanada]

I tried both splitting my dose (which alleviated morning stiffness), and getting up at 2am (which was somewhat problematic). So I purchased enteric coated empty capsules and stuffed the uncoated pred in them (we have no coated pred here in Canada). This way I can take my dose at 11pm instead of trying to wake at 2am each night. This has worked well for me for years now.

[Omakaat in reply to PMRCanada]

What a good idea! Holland: no coated prednisone either, going to look into this.

[PMRCanada]

I purchase them from Capsuline, size “0”.

capsuline.com/collections/a...

[JoanCook]

You can join the PMR support group pmrgca.org.uk/information-a...

[AtopicGuy]

Hopefully, the excellent response within 7 days means the symptoms will continue to improve over the next few weeks. The cause of PMR is believed to be cells of the immune system mistakenly attacking healthy tissues. Steroids reduce the production of these cells but, you are right, the damage then takes time to repair. As we all know from a bad case of flu or covid, we can feel better after a few days, once the infection is conquered, but it can take much longer to feel properly well.