I've managed so far after a rollercoaster of preds to get down to 5mg from a starting dose of 20mg which began in Dec 2019 (14 months)
The latest taper was 2 months ago from 6 - 5
Over the past 2 months I have had to bounce up and down on the preds a few times. (Up to 10 for 5 days then back to 5 ) It's so difficult to know if the return in pains have been Doms or pmr or a mixture of both. I know preds do nothing for Doms but the increase does help each time.
I'm not sure if each rise in dose was necessary as the symptoms aren't pleasant but they are manageable.
The cycle seems to repeat itself, I get woken at around 4am with pains behind my knees and in my upper arms, after being up and about for an hour or so the pains eased off by around 50% but I still feel slightly unwell (with mild pmr ill feeling that you get) no where near as bad as the full blown flares that I have had due to tapering to fast.
I'm not sure if I have reached a point where I am just slightly under the managing dose or if it has got something to do with Doms as I am working everyday.
Do most people reach a stage where the pred dose stabilises which is then the dose you have to stay on? Or should I continue with the slow taper in the hope that at the symptoms that I am experiencing now would at the very least remain manageable
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Leepeelee
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Hello there, things can get quite complicated when trying to decipher the meaning of symptoms when various factors are at play. From what I can see you have got the PMR, OA, a physically demanding job and you’re at a point when your adrenal function can be sluggish as it returns. Popping up to 10mg when you feel iffy could ease any of these issues and I’d be wary of saying that if it works, it must have been the PMR. If it was me I would be wary of doing this when twinges occur, especially if it is in order to be able to work or on the basis of a bad night. I apologise if I perceive this wrongly. It isn’t surprising that pains occur in the night because things tend to stiffen up with lack of activity, pressure on certain points for long periods plus the influx of normal inflammatory substances. Generally with musculoskeletal problems it’s the night when they start to sing. If I wake at 4am I feel vile then and the next day as do many people.
You are at a dose level when the Pred isn’t enough to support your body’s stress and your adrenal glands need to start chipping in to make up the shortage. The more stress on the body, the more they need to work. Adrenally speaking each time you go up to 10mg you switch the system off again and really anything above 5mg can have this effect depending on the person. When you go back to 5mg, you are likely to be at square one with sluggish adrenal function which can make one feel achey, fluey and tired. I found that at this level DOM was particularly bad and I didn’t even have PMR. The only way through it is to keep at the low levels (if no PMR) to make sure the adrenals get a constant message they need to work and this can take months.
My concern is that you’ll be stuck in a loop that doesn’t move you forward but accumulates the Pred you take that in the long run which will have long term effects, a jam today or jam tomorrow situation.
Did you get a break from work over Christmas? If so how was your body?
I did get a break over Christmas but I found that to much rest can bring on aches and pains. Sitting down for to long can cause aching buttocks, neck , upper arm aches etc.
Over the Christmas period I ended up doing things in the garden to keep myself moving around although not doing as much as I do when working.
I did have quite a stressful Christmas though because my entire family had contracted Covid! The stress of that caused some return of symptoms!
I think I am going to stick with the 5mg to see how it goes for a few months
I found the reducing phases very confusing I never knew if I was having withdrawal symptoms or another flare up ,and what was worse is there is no one to answer that. I don’t know what others done, but I would try and ride it out , often taking 5 wks to settle on new dose. After my 10 attempt I asked my GP if I could stay on 6 mgs as I just couldn’t get past it and my quality of life was so effected with the relentless flare ups.
As you are only 20 months into treatment, then would suggest that your issues are due to trying to go below the dose you actually need.
PMR can last a lot longer than most doctors tell you...and the fact you are working probably doesn’t help with resting/pacing yourself.
You may find that increasing by just a mg or two may resolve the problem. As SnazzyD says you have got yourself on a bit of a rollercoaster ride....and that is likely to continue until you get yourself stabilised.
I would try 7mg or 7.5mg for a week or so and see if that helps....if it does stay there for at least a month...then reduce in 0.5mg steps.
Smaller reductions give you more chance to know what is YOUR dose, and not dive below it.
Plus as also mentioned, adrenal glands may be causing more issues.....and a smaller taper will also help with that.
The pain at 4am is very likely to be the morning shedding of the inflammatory substances that cause the symptoms of PMR by creating inflammation - and which the pred deal with. To have got to 5mg pred from 20mg in 14 months is ahead of the curve - the median is just under 18 months.
Whether you could get a bit lower or not, I would be inclined to stick at 5mg for a few months as Rod Hughes in Chertsey, a particularly good PMR/GCA rheumy, likes to do for up to 9 months. He then finds the next stages are easier. Let your body settle down for a bit and take away the stress of reducing.
I just had my window cleaner here. He’s just told me that he’s had PMR for years and has been on his lowest dose of 2mg pred a day for the past 2 years. He’s 76 years old, still cleaning windows! Fair play !
He recommended a supplement called Q10 . He said that it helps him with muscle pain. Have any of you heard of it?
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GCA OR TRIGEMINAL NEURALGIA!!
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