I’ve been coming down slowly on Pred. (Gastro- resistant). Have reached 7mg where I’ve been for last 3 -4 weeks. For last week or so I’ve been feeling increasingly creaky and experiencing aches all over body - back, shoulders, neck, legs etc. (Also put my back out about 3 weeks ago after wearing different shoes with slightly higher heel . It’s not recovered yet🙄). I’ve taken up Pilates lately and am wondering if some of this cd be due to that ( unfamiliar exercises although v gentle ones), OR tiredness ( I don’t sleep that well), OR weather (colder), OR aging (69) OR the lower dose of Pred?! And if it’s the latter could I/should I just ride it out until my body gets used to the lower dose ( that’s sort of what I’ve done previously although the symptoms weren’t as strong as now), or is there no option other than raising dose back up to 7.5mg? If so will I ever be able to come down again or is my body just saying you can’t get lower than that ? I havnt had blood tests for CRP and ESR lately so shd probably book in for them asap to see how levels are.
Discomfort and feeling creaky - is it lowered dos... - PMRGCAuk
Discomfort and feeling creaky - is it lowered dose or tiredness or what?
Probably a combination of all the things you mentioned….and adrenals stuttering.
I’d return to 7.5mg initially and see if that helps.. if so, stay there for another month or so.
If it doesn’t work the following flare protocol- see link and then back to 7.5mg and advice as before -
healthunlocked.com/pmrgcauk...
But have you already tried ordinary painkillers for Pilates and back issues?
Thank you DL. Yes I’ve taken paracetamol on a couple of occasions at night to help sleep. It does help and gives some pain relief but then achiness starts up again during the day…
Well perhaps you need to take paracetamol more regularly for a few days - just a dose at nighttime probably isn’t enough to give you a more definitive answer.
Up to you of course, but think you may well be heading for a flare… so don’t leave it too long before you take action.
Ok. Thank you . Will try that…but with caution and vigilance!
As ever!
Good morning, thank you both DL and Jbobby for the discussion, I too am feeling very similar Jbobby coming off Pred ...doing very slowly dropping 1.5mg every 5 weeks and still went through the very painful shoulders in fact like you Jbobby justvsore everywhere, took paracetamols every 4 hours for a few days, still a bit achey but not as bad ...i am down to 15mg ...the plan is to carry on till ....hopefully....this time reach my 5mg....and stay there for a good while. Such a trial and error thing and we all so diffetent. Really appreciate the advice on this forum xx and in a weird way every encouraging to know we are not alone in our struggles, thank you all xxx
I’m with you Den73…. It’s a struggle. But this forum is wonderful and I often find my symptoms are somewhat alleviated just by posting and receiving the great feedback, informed opinion and support - before I’ve even tried some of the suggested solutions! Anyway, I wish you well. We’re in it together!
I note you don't really include "is this a flare" as an option, you just say lower dose of pred! Which would be my assumption to be honest!
However - Pilates may FEEL gentle but believe me, it isn't!! I had been doing it for years when PMR started and I sometimes had to drop from level 3 back to level 1 to avoid sore muscles - as if I was an absolute beginner, occasionally just not do an exercise or just a couple of reps. The weather won't help. And I find I get very achy after a bad night's sleep.
If regular paracetamol and warmth doesn't help or it gets worse - you may need to treat it as a flare. There are rheumies who say not to try too hard to taper in the winter, winter plus Christmas planning are not good for PMR. And you do also have the left-overs of those shoes! Even a slightly different heel height can really upset back muscles that aren't quite right and have found a fairly comfortable place for themselves. Our back muscles work very hard to keep us upright and don't take kindly to change.
Thank you PMR pro. Brilliant and helpful as always. And understanding! Yes, I must say I think Pilates is putting a bit of strain on it - difficult to know if it helps or hinders. I’m not doing the machines, just exercises and weight lifts for arms which - I think - might be exacerbating the upper back ache. Anyway, I hear what you say. And if paracetamol and rest don’t help I’ll consider returning to 7.5mg where things were pretty fine. Interesting what you say about winter too. I feel that’s playing a part. Anyway, many thanks again for your help.
I found Pilates very helpful - and that was PMR without pred!! But I had to be very careful and actually struggled unless I had done an aquafit class in a warm pool first before going on to do the Pilates class. I could also do an Iyengha yoga class the same way providing both were heavily adapted for me - both instructors were amazing, I was very lucky at that gym. And if there wasn't a pool class I would go into the steam room first, do some stretches there and then go to the Pilates.
Sounds like you have collected the full house there. If you dip into the dose range that isn’t quite what your body needs on a daily basis to function (PMR aside) the adrenals need to make some of their own cortisol. The dose at 7mg can still be too high for the message to get through to the brain to wake them up. This can leave you feeling washed out with little stamina to do much, even a little trip out or light chores. I had to reinstate a 2 hour afternoon sleep after feeling like I was getting my life back on 10mg.
I assumed that as the dose got below 10mg I would segue back into more exercise and strengthening but I was so wrong. Due to deconditioning and poor posture I had to start from a feeble baseline in order to train to make it into a class or gym. Just taking up Pilates like the old days was a no no because my muscles and ligaments were weak. It was physio and then prescribed exercises first. As for wearing heels, if I did the next day would feel like I had been riding a rodeo.
For sleep i have to watch for a kind of habit establishing whereby my body builds the sleepless in to its routine. This can occur from pain at night (another unrelated story), not having lights out by 10:30-11, or brain ticking over. If I have a run of bad nights it is hard to get back even if I’m exhausted. If I take pain relief it is always at night, and I re-set with a few days or a week of Chlorphenamine (a strong antihistamine) used for motion sickness and short term sleep issues. I use the liquid as the capsules are too strong for me as I’m a sensitive flower. Might be worth a try.
Thank you very much Snazzy D. Really appreciate this. Youre right about sleep - not having lights out by 10.30-11. Really important. And I should make room for an afternoon nap. thank you also for Chlorephenamine rec. Or an antihistamine. Should probably top up Paracetemol with that. went to physio earlier this week but think I need to follow that up with more alongside Pilates. Thank you so much
Sorry! I meant Promethazine! The normal daily antihistamines and even Chlorphenamine aren’t sleepy enough usually.
I could have written what you wrote. My rheumatologist told me it was going to be a bumpy ride. Guess he is correct. All my best to you.
I hear ya! I am down to 5 mgs and feeling exactly the same way. I was feeling quite good yesterday and tried to do some gentle yoga yesterday. I am soooo sore and stiff today. The fatigue is really oppressive.
We are in this together my Poly pal.
We are indeed! Onward and upward!
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