Hello! I’ve been on prednisone for almost 2 years for an indefinite diagnosis: the symptoms are very like Polymyalgia rheumatica, which I had several years ago, but nothing is showing up in my blood tests. I have fibromyalgia and my doctor thinks it could be a flareup of that. It’s definitely stress-related.
Being on steroids has definitely helped, but when I got down to 3 mg the pain flared up really badly, along with terrible exhaustion. I’m on 2 mg at the moment and some days I seem to get by (I have to push myself), but other days are really difficult.
I decided to have a swim yesterday as I haven’t been exercising, and today the pain has been absolutely awful, along with terrible muscle weakness and exhaustion. It’s not the usual muscle pain and tiredness after exercise.
Could I be reducing the prednisone too quickly?
Why would I be feeling so bad after the exercise?
Even though I’ve reduced the prednisone, I’ve actually put on weight.
My doctor said I could go up to 10mg if I want to, but I’m reluctant to do it.
I’d appreciate any thoughts you may have
Many thanks!
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Harpgirl
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There will be others much more knowledgeable along soon. However, if the pred helps then it sounds more like the pmr and also sounds as if you are below the dose you need. Could be worth going up as dr suggested and see what happens. Less pain and more mobility is always worth the downside of pred in my book. Lots on here about dealing with the weight issues, too. Hope it eases soon.
Hello there. Diagnosis of PMR can be tricky because there is no specific blood test so most of the time it is based on symptom history and response to Pred. One feature of fibromyalgia is that it doesn’t respond to Pred. Blood inflammatory markers are not always a good guide because some don’t get raised markers. Also bear in mind that Pred suppresses these markers so having normal readings while ON Pred doesn’t mean you’re done and dusted with PMR. Two years feels like a long time but in PMR land it isn’t for most.
Fatigue at low doses can mean autoimmune activity, poor adrenal function or plain over doing it.
Adrenal function can be sluggish due to the adrenal glands not needing to work while the Pred dose has provided more steroid than needed. When the dose drops somewhere below 8mg the adrenal glands don’t always wake up at the same time to make up the short fall. It can take many months of feeling exhausted and vaguely ill because having the right level of steroid in the body is critical to function.
Exercise needs to be built up too, not diving in to fix a lack of fitness. There will be affects on muscles, ligaments and tendons due to Pred, effects on from PMR and general reconditioning. Injury is easier so build up from a low point that doesn’t hurt.
So if your Pred dose hasn’t really been sufficient to keep PMR inflammation controlled, a bit of stress might just kick over the bucket. So, yes you can indeed reduce too fast if you are over stepping what you currently need to keep inflammation under control and/or help your adrenal glands to come on line.
Weight can be controlled with a very low carb diet, even on high doses. It also helps to stop Pred induced diabetes.
Really you shouldn’t be having to push it to get through the day. Something needs to be addressed.
Before I started prednisone almost 2 yrs ago, there were no inflammatory markers in my blood. But the steroids (I think I started at 30mg) really worked well, except for very uncomfortable excessive sweating, which has continued even after reducing😟
My doctor really doesn’t seem to have any idea of what’s going on, and I was definitely taken down far too quickly - to 1mg in about 9 months. I was put back on to 10mg, but again taken down really quickly. I honestly can’ remember what dose I felt ok at. I’ve been hovering between 5 an 2 for a few months.
When I was on a higher dose I actually wanted to exercise, but I did take it easier than the other day. I love swimming and thought I’d be ok, but hardly had the strength to breath between strokes.
I’m back on 5 mg, and may go back to 10. I had a cortisol saliva test done, and am waiting for the results.
As for the weight - I’m on a sugar-free lowish carb diet - I need some carbs - and have still put on weight.....
I agree with Snazzy particularly how you’re trying to deal with it.
Your pred dose might be too low for you plus too quick a drop in one go - more than the 10% recommended reduction of your current dose. I’ve suffered like you and quickly learnt I had to really slow my taper. Go back to 3 mg and when/if you feel better only reduce by .5mg. Your bloods won’t necessarily show raised markers while you’re on pred but it doesn’t mean you haven’t got PMR. Pushing yourself will not work either - listen to your body.
It difficult to know what’s causing what but with your history it needs looking into further.
Try another increase - if it’s easing your discomfort it probably means you have PMR. It’s a good tester to take to another doctor. You can come back down but find the right dose that’s right for you first and stay there until you’re symptom free before trying a very slow taper. Good luck.
With PMR you are never reducing the pred dose relentlessly to zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did. It sounds as if you have arrived and overshot: if you were good at 4mg that is where you need to be for now.
In some people the blood markers lag behind symptoms - but as long as you are on enough pred they should remain low. If the pain goes with pred - it is PMR not fibro. Fibro is NOT an inflammatory condition, doesn't raise markers and doesn't respond to pred.
If I were you, I would go back to 10mg and see if that works - rules out fibro problems. If the pain has resolved in 7-10 days you could then drop straight back to 5mg and work from there if that is enough again.
If you are pushing yourself through pain you are doing yourself no favours. Your muscles are still being attacked by the underlying autoimmune disorder - and are intolerant of acute exercise. You can't just suddenly start off exercising - you have to start small and build up slowly.
Thank you for explaining to me about PMR and prednisone. The goal, with my doctor, has always been to get off the steroids as quickly as possible, and I’ve had several attempts and haven’t succeeded. I honestly can’t remember the best dose for me, as it’s been so up and down. I started at 30mg (I think) less than 2 yrs ago, and was brought down to 1 mg in 9 months. I had to quickly go back to 10. And it’s been up and down since then. So I’ve become used to pushing myself and coping with intense pain.
If I went back to 10mg, could I then drop straight back to 5?
Well yes, get off pred as quickly as possible - but it has cured nothing and PMR is in charge until it burns out. And that will be for a lot longer than a lot of doctors think - almost NEVER 9 months. So their insistence on reducing too far too soon just causes problems in the long run.
You could in theory if you were only on10mg for 10-14 days - but it depends how much you NEED. 5mg may not be enough and the yoyoing just makes it worse.
Your current pain will probably be a mixture of PMR and DOMS - delayed onset muscle soreness due to the exercise you didn't build up to to slowly. It is caused by the muscle fibres developing tiny tears which then heal - that is what training is about because after healing the muscle is stronger for the same exercise. And it is why rest days are so important in the earlier stages of training or recovery.
Pred is unlikely to sort out DOMS pain - the cause is different although PMR makes it more likely you will develop DOMS that is worse than you are used to and takes longer to resolve.
Having no been on pred since 2011 I know what not too well if you drop too much too quickly.even 0.5mg drop can be difficult. I find that 1mg more every other day helps. But this Covid situation is stressing us all. I have an ill son, grandson & grandaughter in law. Some are recovering better than others, but it all causes stress. As is this lockdown, like being in an open prison. Try to find what is fine for you. Also if you feel good, do not too much that day because you will pay for it the next. Very difficult to pace oneself, I constantly fail. Good luck
Are your family ill with covid? That’s awful, and I’m so sorry - it would be causing you terrible stress. I hope they recover quickly.
I’m in Australia, (originally from England). I have family in UK, and have been following the COVID crisis there. It’s horrible. And the lockdown is terrible. Especially for people who live alone, or in bad family situations.
I’m an all or nothing person, and find it very easy to overdo it, even on bad days. I have a lot of relearning to do, it seems!
Thank you for your good wishes. We have a son with 'long-covid' who is taking ages to recover, grandson & his wife, who are recovering faster. I was an all or nothing person, still am to some extent, but learning. Do have and LLD (=long lie down) in the afternoons if possible, makes a lot of difference.
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