Need advice after decreasing prednisone...
Posted , 16 users are following.
After 7 years of PMR and long time at 5 mg, I have with slow method I learned from your forum, dropped to 2 mg. Am working on decrease to 1 1/2. I am loaded with arthritis so hard to differentiate fro PMR. I have been waking up at 4 am with pretty severe aching in both hips and back, no upper extremities. But after a shower it all works out and am in no pain. It’s been so long since I experienced PMR pain but I don’t remember it going away in the day, plus it was in all extremities. I don’t want to up the dosage if not necessary so I ask for your advice which has in the past been very helpful. Many thanks for any input!
0 likes, 36 replies
EileenH roda19095
Posted
Honestly don't know - but why not try upping the dose to the last place you were good for a few days and see if that sorts the hip pain in the morning? If it doesn't you can drop straight back to where you are. Certinly, hip pain at that time is a failsafe sigh of a flare for me.
This is a very low dose - under 5mg has next to no adverse effect. There is not a lot to worry about slowing your reduction to zero.
roda19095 EileenH
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Also want to thank everyone else who responded to my query. Ascalwaysvthis forum goes above and beyond!
Michdonn roda19095
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BettyE roda19095
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Glad the 5 did the trick but from 5 to 4 is a 20% drop and four to 3 is even higher. I found that at the low doses I got a better outcome reducing by tiny, tiny steps. I used a pill cutter and, at the very end,a say, 0.5 and 0.25 by alternating the dose over two days. I know that might sound ridiculous but, as I've said often before on here ( sorry! ) the hospital pharmacist whom I saw as part of my hip op surgery, told me I absolutely must not stop taking the 1 mg. I was on by then as my body did not need the double shock of the op and stopping the pred.
Hope you find a regime that works for you.
EileenH roda19095
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Can you manage 1/2mg reductions (I mean in terms of cutting the tablets)?
Really - I can't emphasise the importance of SLOW enough... No rush - more haste, less speed.
Roda_4445 EileenH
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EileenH Roda_4445
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OK - but 5mg is a very low dose, a lot less corticosteroid than your body makes normally anyway and so it is being topped up however much you are taking as pred. I know you are frustrated - everyone feels that way.
No reason why you can't start a taper again. Just bear in mind that it is possible you flared because the activity of the disease has increased - and that means you might need a bit more pred than you were on before. It isn't worth being in denial - that's all I meant.
BettyE roda19095
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"I have been waking up at 4 am with pretty severe aching in both hips and back, no upper extremities. But after a shower it all works out and am in no pain. "
That could be me writing about me!
I have taken no pred. for more than four and a half years and have several times asked for ESR and CRP bloods which have always come back normal ( not that that necessarily proves anything, I know. ) My pain is one knee and both feet which doesn't sound very PMR typical so, although I have occasionally though longingly of my pain free days on Pred., I have not asked for a new prescription. Like you, I find my hot morning shower does get me moving and the more I move the better I feel. The problem is that when I sit still for more than half an hour I have to stretch and massage myself back to comfort.
I heard recently of someone in France on a business trip who was suddenly severely incapacitated by his long standing arthritis and was given steroids by the French doctor he saw. When he related this to his GP in England and asked could he have some more as he felt better than for some time he was disapprovingly refused. I do not know the dose but, as Eileen says, something around five or lower would probably have no deleterious effects so why are they regarded with such disapproval for OA patients, I wonder? It was on of the few upsides to having PMR.
What does your GP say?
EileenH BettyE
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It is the inbuilt terror of steroids at any dose that most English-speaking doctors seem to have developed! Don't ask me why - non-English-speakers seem less hung up on it. Even when their English is good enough to read all the international work.
amkoffee roda19095
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Is it possible that it is some type of inflammatory arthritis? I've been told by someone who has rheumatoid arthritis that after she gets moving around the pain fades. I understand where Eileen is coming from but instead of increasing you pred you could instead ask your rheumy to treat your arthritis. If that helps then its not PMR. Or yet another way would be to take some pain meds and if the pain reduces it probably isn't PMR. You now have three options to try.
pauline36422 roda19095
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Twopies pauline36422
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Michdonn Twopies
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BillyP Michdonn
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I am with Eileen about the 5 Mg bit..........
?I am 80 and have been on Pred for about 16 years...
With a few flares occasionally that require higher doses....some times 25Mg or more , depending...
?My main aim is to get down to 5Mg each time and it may take a year or two to achieve that after a big flare......... i cut down one quarter Mg per month on a modified DSNS pattern......
( ie, one half Mg over 60 days ,)
?Once i get to 5 Mg i am happy to stay there for the rest of my life...barring more flares of corse...
?Maybe i am lucky .. i have few side effects...although i only have to brush against some thing to lose a whole heap of skin, also am covered in bruises etc.. but i have just come to expect that......
Anyone can let that worry them to death........But i just accept that and carry on..........
?All the worrying in the world is not going to change things......In the end you do what works out ok for you....easy to say i know ...i went through the same stages till i settled on what suited me, now i mostly just self medicate unless things get out of hand..........
I tried MTX and a heap of other things all to no avail.......these days its pred only, taken of a morning.
I have been taking Foxamax once weekly ..depending on bone density results......
?As i said i may have been lucky side effect wise..... but it is super easy to go off on a tangent if you get the idea you other problems.....like sore hands... you might think you have sore joints when in reality it is the muscles or Vicky Verca....
?Sad part about it all, is that most people react differently, so , till you find what suits you, it can definitely be a worrying time So just roll with the punches (easy to say isn't it).........
.
BillyP
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What i didn't mention was ......i can get from 25mg or more down to 10 in a matter of a month or so,
?Then the long hall from 10Mg to 5 Mg is what i drop at one quarter Mg per month.......
pauline36422 Twopies
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EileenH pauline36422
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I've had PMR for 14 years. And no - confirmation today, it has not gone! Yet another flare...
ptolemy EileenH
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Twopies EileenH
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Michdonn EileenH
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Sorry EileenH, God knows you know the routine. Hope it is not a bad flare.
😟
BettyE EileenH
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You deserve better but unfortunately it doesn't work like that. Hope it eases soon.
EileenH ptolemy
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Managing fine on 8/9mg - the flares are changing, at least this one and the one just over 2 years ago (or is it 3????). It is most peculiar. Think it might mean there is an element of large vessel vasculitis going on - which I have always suspected and a couple of rheumies have agreed it is likely. I had got to 7mg - and suddenly the atrial fibrillation went mad. At 8mg it was better, at 9mg no sign of anything. Will be an interesting discussion in a couple of weeks.
No need to feel sorry/worried/concerned for me - it isn't bothering me particularly. Bit tired but nothing too bad. I have a sore right thumb, a few niggles, but even in a flare I'm probably a lot better than a lot of people are normally. I'm used to it after all!!
margot34956 EileenH
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I do hope and wish you back to normal soon.
ptolemy EileenH
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EileenH ptolemy
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Humph!!!! As long as he doesn't suggest stopping the pills...
Elijo BillyP
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Hi Billy...I'm like you, I bruise so easily and don't even know most of the time what caused it. So I just accept it, but do try to be careful. I was on 5 for quite a while, but have been able to tolerate 2mg. and will soon decrease bya half mg. I have a feeling my PMR might be gone! (Yes, I'm being very careful to not reduce too quickly). Good luck with your bruises! Elinor
Michdonn ptolemy
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ptolemy Michdonn
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ptolemy EileenH
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Michdonn ptolemy
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EileenH ptolemy
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He's quite right - your eGFR falls as you age, it's quite normal. The experts were furious when it was decided the eGFR results would be stuck onto the reports - they knew that GP practices wouldn't realise that it was a normal part of aging and would tell patients they had kidney disease when they didn't. I have come acrossit quite a lot. The good GPs ignore it - until it is meaningful.
ptolemy EileenH
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EileenH ptolemy
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Nah - not in 2020. We'll be dead before it all works online...
ptolemy EileenH
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EileenH ptolemy
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I wouldn't believe him (or most of his colleagues) saying it was say to cross the road!
EileenH
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