beginnings of a flare vs reduction in Pred ?

[diplodocus]

I've had a good experience with Pred after being diagnosed with PMR Nov 17. Initial does of 20mg removed *all pain* within a day, even stiffness in the knee which predated PMR and I assumed was OA after multiple cartilage ops.

First setback was after the reduction to 4mg when I felt a soreness in the upper arm muscles upon waking. This is probably how I was feeling two years ago when I noticed this arm pain and assumed I had over exercised. So for me the upper arms are the canary in the coalmine for PMR

A nice new GP ( they rotate all the time ) blood tested me ( all good all low) and bumped me back up to 4.5mg .

Separately my optician spotted that I have map dot fingerprint dystrophy . This doesn't seem to be explicitly linked to PMR or Pred but now that I realise I've had a dry / sore / gritty eye problem for years.

At 4.5mg the soreness is still there, goes away after I take more Pred in the morning.

At this level it's absolutely tolerable and not deteriorating. The only other symptom I have is finger stiffness which I can just flex out in the morning.

Should I power through this small amount of discomfort to see if I can get by on less Pred or am I at a tipping point where it might come back stronger and require me to take more Pred ?

[Hidden]

Hi diplodocus

It sounds like you could well be at the tipping point. That is very very fast drop...very. Is that enough emphasis? 6 months??? I would be increasing by 5mg until I was sure inflammation totally controlled. It sounds like the inflammation tap isn't just dropping slowly but filling the bucket quite quickly. PMR seems to have minimum active period if 2 years plus. You may be a very lucky person and I hope so. Just keep a watch on that soreness etc.

[DorsetLady PMRGCAuk volunteer]

Hi

As Poopadoop says you’ve probably reached/gone below the level you actually need. The fact that your bloods were good doesn’t necessarily mean you are all okay - they are apt to lag behind symptoms.

No point in “powering” through - you will just end up with more pains- and require even more Pred! You aren’t very far into your journey so nip things in the bud now! You are way below the “natural” level of cortisol so no side effects from too much Pred.

[diplodocus in reply to DorsetLady]

so just stick at 4.5 for another month and monitor how it goes ?

[DorsetLady PMRGCAuk volunteer in reply to diplodocus]

Hi again,

You say ...At 4.5mg the soreness is still there, goes away after I take more Pred in the morning.

just to clarify, what amount do you take each day...and when?

Most people feel a little achy first thing in the morning, and that’s because the substances that are causing your pains etc (cytokines) are produced around 4am and then you have to wait until the Pred has got into your system to control them. If you are taking uncoated tablets that’s takes an hour or so, so you may have a period when you may feel sore. To counteract that, some people take their tablets before the 4am hit.

But in your case I think we need to ascertain whether it’s that, or whether it’s simply not enough Pred to last 24hours!

Not easy, this game 🤨

[diplodocus in reply to DorsetLady]

I've been taking 4x1 and a 5 on alternate days . I can't say I notice difference between the 4 days and the 5 days so would that indicate that I'm not just running short of cortisol during the night ? Your 4am alarm is interesting : I'm awake most mornings at 4 am these days . I used to sleep until 6:30 regularly.

[DorsetLady PMRGCAuk volunteer in reply to diplodocus]

You might not feel that there is much difference between your 4mg days and your 5mg days, but it might be just enough to unsettle things. Would be better for your body and your PMR to take 4.5mg every day. I know that sounds pedantic, but on such little things PMR hinges!

If you are awake at 4am then why try taking your Pred then, with a spoonful of yogurt is enough, just to see if it makes any difference. If it doesn't you can go back to normal time. There's a lot or trial and error when you get to lower doses!

So agree with piglette's comment as well!

[Hidden in reply to diplodocus]

People seem to process the pred differently. You might need extra to tide you over night and feel.ok in the morning. I have experimented taking pred at different times. Sometimes it depends on when you need the relief if you don't get the 24hrs relief. I seem to get better day long relief if I take on waking...which is usually 5am to 6am. I then roll over for an hour or so and start the day 8 to 9am. That seems to last until next morning. I tried taking it at 2 to 3am to beat the cykotine dump but found by 6pm my legs were very sore. I think the thing to remember is that if the PMR type pain is there every day and despite the pred then you aren't stopping the inflammation. It's a bit like the idea that if you wait to drink until you are thirsty then you are already too late....You are dehydrated. If you are experiencing soreness........

[PMRpro Ambassador in reply to diplodocus]

That suggests to me you are taking slightly too little pred to manage the inflammation. Waking at 4am like that is a sure sign for me I need a bit more pred. Just like sore spots in my wrists on the soft parts at the base of my thumbs.

[diplodocus in reply to PMRpro]

after a day of discussion on here and on the lower 4mg day , no pains at all this morning and I slept through until 6:30 ! Maybe because today isn't a workday or perhaps because I followed a rather Mediterranean diet yesterday ?. I'm going to have to keep a journal . Thanks everyone for the help and advice !

[piglette]

I find that hanging on at the current dose until you really feel comfortable is well worth the wait.

[PMRpro Ambassador]

If you have got from 20mg in November last year to under 5mg now I really really wouldn't complain!! Stick where you are, even add another 1/2mg if you feel better there. You are at a physiological dose - less than the amount of corticosteroid your body produces naturally in the form of cortisol and which is essential to life.

Don't try to force anything - if you have a flare you will just end up going back to a higher dose, wasting all the perceived benefit of reducing quickly and possibly struggling to manage it again.

[diplodocus in reply to PMRpro]

so I bumped down gradually through the summer and autumn with no significant setbacks . Saw my Rheumy Dr Mangat (very good !) at the Royal Free in September and tests were all good so now I'm off Pred and back in the "care" of my GP. I feel better for having been on the Pred ; pains all gone , stiff knee magically cured , ability to exercise restored. However I'm glad to be off steroids : i feel a bit sharper , more "normal" . I feel like I have to exercise daily or I'll stiffen up but it's not in any way the same as PMR stiffness more of a leadenness due to inactivity.

I'm alert to any relapse especially with Jan and Feb to come but overall a good experience with the NHS once I got in front of the right person (after 18 months!)