flare concern: I am continuing to deal with my... - PMRGCAuk

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flare concern

Skier321 profile image
25 Replies

I am continuing to deal with my latest flare. You good folks gave me some advice a week or two ago. When trying to reduce from 2.5 mg of prednisone to 2 it created more stiffness. However for the month of January at 2.5 mg I was probably all along more sore than I should have been. Two weeks ago I went to 8 mg for 10 days then seven days ago went down to 3 mg. I feel fine after 5 hours once the prednisone is processed by my body. Unfortunately I am stiff in the mornings with soreness in my lower back, shoulders and wrist. When I went back to check on my daily pmr log I see that I was fine for the month of December at 3 mg, no stiffness at all. Should I stay at 3 mg now and wait to see if things settle down and improve or do I need to up the dosage again? I don’t want to yo-yo and mess up the flare protocol. Thank you for your assistance

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Skier321
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25 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Try giving the 3mg another week and see if it settles.

If not then an extra mg might do the trick .. hopefully you won’t need to repeat the flare protocol

Skier321 profile image
Skier321 in reply toDorsetLady

Thank you for this suggestion. I will do that. I don’t know if you can do more than one flare protocol at a time. I have an angiogram slated for 4 to 6 weeks from now and stents if needed I don’t know how upping my prednisone may affect this. I hope the heart team won’t cancel it because my dose maybe too high

agingfeminist profile image
agingfeminist in reply toSkier321

I had an angiogram on 3mg. The head of cardiology who saw me said he would make sure that the surgeon doing the procedure would be aware that I could suffer adrenal insufficiency. All went well...it was fascinating...you can watch it on the screen that the surgeon sees.

perceptual63 profile image
perceptual63 in reply toSkier321

I had a heart catherization at 15 mg of prednisone so I think you'll be okay at your current dose and don't believe they'll cancel your angiogram.

PMRpro profile image
PMRproAmbassador

Sounds to me as if the 3mg just wasn't quite enough and the inflammation slowly started to build up back then but you only registered it when you went to 2,5mg.

I had the same procedure as for an angiogram in early January for an ablation - on 7mg pred. No-one in the cath lab complained about the dose.

Skier321 profile image
Skier321 in reply toPMRpro

Thank you for your reply as DL said should I wait at 3mg to see if it clears up.? If not what would be my next step given that a week ago I was on 8 mg for 10 days

PMRpro profile image
PMRproAmbassador in reply toSkier321

I suppose it MIGHT clear at 3mg - in which case you could wait and see if it stays the same or worsens at all. But if it were me, I'd go to 4mg - but I'm a wimp!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSkier321

It’s up to you… but you didn’t say anything about angiogram. If you had, I might have suggested you go to 4mg and get it sorted before then

Skier321 profile image
Skier321 in reply toDorsetLady

Thank you again. I will follow both your advice. I will tip toe around at 3 for a week longer then if not improved go to 4. At 3 I am fine once the prednisone kicks in about 4 to 5 hrs later. It is in the morning that it’s an issue. In Canada we used the delayed action prednisone

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSkier321

How about taking delayed action Pred just before bed? Or does that affect your sleep?

Hope all goes well with your angiogram.

Skier321 profile image
Skier321 in reply toDorsetLady

Never tried that I was told by doctors to take in the morning. When I am on the right dose I have no issues in the morning. When the dose gets lower I am stiff in the morning then ok in the afternoon once the prednisone kicks in. In January I was fine I the morning at 3 but that changed at 2.5 but I soldiered on as I thought that as I got lower the age related aches and pains maybe kicking in

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSkier321

Sometimes at low doses it’s a bit difficult to know what pains are PMR and what are just life.. and whatever you plump for, it’s sod laws it’s the other! 😂🤣

PMRpro profile image
PMRproAmbassador in reply toSkier321

I nearly said in my reply - if you were on the right dose I don't think it would take so long to clear the symptoms.

Skier321 profile image
Skier321 in reply toPMRpro

In Canada we use the slow acting prednisone that has to be processed through the liver I think before you feel the benefit. I Europe I think you use prednisolone that is fast acting. I judge my reacting to the prednisone based on the morning pain. If mostly pain and stiff free then I am on the right dose if stiff in various spots then dose is too low. That is how I judge plus reduce only .5mg a month. I don’t have any arthritis

PMRpro profile image
PMRproAmbassador in reply toSkier321

There is actually only about an hour difference. I am on prednisone in Italy, it is the UK that tends to use prednisolone.

But however slowly you taper, you are not going to get past what you are looking for: the lowest effective dose, the lowest dose that clears out all the new inflammation created each day. If you are on even slightly too low a dose, the left-over inflammation will build up over time, in the same way a dripping tap will eventaully fill a bucket and overflow.

Skier321 profile image
Skier321 in reply toPMRpro

Yes that is why I look to be pain free in the mornings for a month before reducing by .5 mg to the next dose.

How long do I need to wait to do another flare process with out yo-yo ing and messing things up

PMRpro profile image
PMRproAmbassador in reply toSkier321

You could just try 4mg and see if that improves things

Skier321 profile image
Skier321 in reply toPMRpro

Thank you

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSkier321

Re LemonZest11 comments about taking Pred around 2 am- this is rationale behind that -

Your body produces proteins (cytokines) every morning, and the primary function of them to regulate inflammation, and as such, play a vital role in regulating the immune response in health and disease. There are pro-inflammatory and anti-inflammatory cytokines.

When your immune systems is not working correctly as in PMR or other diseases then the anti-inflammatory cytokines do not work correctly and allow the pro-inflammatory ones to dominate. When this happens within the blood vessels it restricts blood and oxygen circulating around body particularly in PMR to muscles around major joints and causes pain and fatigue.

Pred is used to dampened down your overactive immune system including the cytokines, and as the normal time for them to be released in the body is around 4am.

If you take your medication a couple of hours before that (or last thing at night) it is in the system ready to act….however it you don’t take it until after that time, your body may already be stiff and painful , until the Pred has worked (1-2hrs roughly).

Missus835 profile image
Missus835 in reply toSkier321

Off subject, "in Canada we used the delayed action Prednisone". I'm in Nova Scotia and have used the regular, uncoated tablets for 2 years. Just in case you thought you might be unable to get them. Best of luck with the angiogram.

readingbooks profile image
readingbooks in reply toMissus835

Skier is referring to the difference between Prednisone and Prednisolone ( which is used in the Uk) . Not, coated versus uncoated ( gastric resistent ). It's not usually referred to as delayed action which is where the confusion lies, I think.

PMRpro profile image
PMRproAmbassador in reply toreadingbooks

Yes, the term "slower onset of action" would be better maybe since there is a delayed release version in the form of Lodotra/Rayos as well as enteric pred which just happens to take longer to release.

LemonZest11 profile image
LemonZest11

These two women, DL and Pro, advised me some time ago to try taking my pred at 2am. They can explain the reasoning behind this much better than I can, but it stopped me awakening with the sort of stiffness that you describe. It’s not difficult to do, doesn’t have to be 2am on the dot, just when you awaken for a pee, taken with a small tub of yoghurt, changed my life!! If you are taking the pred that takes longer to work, perhaps the timing needs adjustment, they’ll know.

Bridge31 profile image
Bridge31

I had my angiogram on 8mg. No problems at all. Like agingfeminist’s experience I found it fascinating . Very cold though if I remember correctly !

Polygolfer profile image
Polygolfer

tapering speed varies by person… you might be fast tracking yours? Also, did you continue exercising your joints? Within reasonable limits, which only you will know, light exercise, stretching or just simple rhythmical movements, increase blood flow to all painful joints and can be very useful in easing discomfort. Is there arthritis in your wrists or any damage to your disks? If so, those kind of ‘perennial’ pains do resurface when the steroids stops masking the natural pain. I have arthritic wrists and partially dried disks in my lower back and I never even remembered thos issues were there during the period I was on steroids… so if you’ve always had some of those pains it is just natural that they will resurface at some point during your steroid reduction plan. Also, because only you and your doctors have the full picture and history of your fitness and overall health condition I would suggest you only take or adjust your intake of such powerful drugs under medical guidance.

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