I would like to hear from somebody who also split their Pred dose --one in the morning one in the evening. ( right now 12mg all together, down from 20)
I sleep better than ever, I urinate a lot more for some reason, I have at least one episode of night sweats, but only around my chest and neck area. After doing my exercises for 20 minutes or a walk for an hour in the afternoon, I take my 6mg and in one hour I am freezing and shivering and have to wrap up and rest for half hour and then I am better again. Is this unusual?
I was down to 10mg a day, but my arms still hurt all morning.
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km5yx7
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I also get the sweats in the same area - somewhere I read that this is typical in certain illnesses and it is because there is a whole load of nerves supplying that particular area. Sorry - can't remember the exact comment/reason. My night sweats tend to happen when the dose is just teetering on not quite enough - I wonder if making your split slightly different might help? I have heard a few people say they experience a variety of such symptoms about an hour after taking their tablets - as the pred reaches the peak in the blood. Mine was the other way round - take the tablets and go our and do something more active and I had a fit of the wobbles!! No activity, no wobbles!
They recommend 2/3 of dose in morning and 1/3 in evening if splitting. I seem to have to split so as not to be so sore in the mornings. I am presently at 9mg but still am sore in mornings. Told this to Rheumy yesterday but he suggested I take a couple of Tylenol in the mornings. My sed rates had gone from 2 to 8 and he said it was nothing. I told him I have never really been pain free since diagnosed with PMR and he said this was not unusual. I am to continue reducing by 1mg monthly viper think I will do the slow reduction. Good Luck on your journey
He may think it is nothing and, in the great scheme of things, it may not be. However - he needs to check the trend of the sed rate - it has risen, will if continue to rise? If it does - that is evidence of a flare to go with that soreness being persistent.
I take 1/3 in the morning and 2/3 in the evening along with a Ibuprofen. The other way around and without the Ibuprofen I wake up stiff. I added the Ibuprofen around 5 mg. I'm down to 4 mg now so it will be 50/50 for a while. PMRpro is right about keeping track of esr and crp. I have a chart and keep notes when I have a cold, etc. I noticed my numbers went up when I had a cold so I didn't panic because I didn't feel any more pain than the usual. I guess any type of infection your body is fighting will increase the numbers. I also found that full spectrum CBD oil and acupuncture has helped a lot in reducing the Pred.
I am down at 6mg and split 5mg coated in the evening and 1mg uncoated in the late morning. I take a dmard too so get the most out of that 6mg so it last the bigger part of the day. If I wasn't on the dmard I would probably try 1/3 dose at night and 2/3 in the morning to spread the load across the day.
I’m currently on 12mg also and for the last two weeks have taken this at 5am. This has helped greatly with the morning stiffness I had. However now sleeping is a challenge. I’m thinking I should split the dose but unsure as to what the split should be and if I should continue with 5am routine?🤔🤔🤔 Oh and I’m never pain free😩
On taking the first dose of 15mg. Trying to remember back that long I can’t recall what happened but think when I got to 12mg it kicked off. Since then I’ve not been pain free which seems like a long time. I’m waiting an appointment for an mri scan to rule out Avascular Necrosis.
How did you reduce? Often simply trying to reduce in too big a step is enough to kick off pain - going back and reducing in smaller steps is enough to avoid that. Who knows why - but if it works why argue? And if 15mg is taking out all the inflammation and keeping it just under the boderline for 24 hours you will feel better than if the effect of 12mg isn't lasting the full 24 hours - and it does sound as if that may be the case.
The thing is I’ve been up to as high as 40mg at one point. I’m all at sea with it really. I’ve tried reducing from 15mg several times going 1mg down for at least 6 weeks before a further reduction. I’ve also tried the dead slow method. Never completely free of pain and when I get to around 12mg it’s a lot worse. My head says I’m not taking enough but I just don’t want to give in and up it again, which is probably stupid. Don’t get me wrong I’m doing better than some on here. Walking every day for the last two weeks about 7 miles a day. I’m able to do a bit of work in my garage workshop but tire easily, so stop and rest. Driving for over an hour sees me get very stiff in the hips and I have to stop after two hours to move which relieves the pain. I hope you and your other half are doing better now after all you’ve been through?
Then the most likely reason is that you are absorbing far less of the pred than others do - the actual bioavailability of pred (the percentage you absorb) varies from 50% to 90% depending on the patient. If you are at the 50% end, while you take 12mg you are only getting the benefit of 6mg, your neighbour towards the 90% end of the scale takes 12mg and gets the benefit of over 10mg - or, alternatively, only has to take 7mg to get the benefit of 6mg. If you took 7mg to get the same effect no-one would be complaining/worrying would they?
Has your doctor ever considered using depot methyl prednisolone injections? Injections and infusion provide 100% bioavailability.
Well that all makes sense. My old rheumy had suggested I might be steroid resistant which is pretty much what you’re saying. Not been offered depot methyl prednisone injections. Now with a new rheumy on NHS, not private any longer.
I wonder if taking the 2015 Recommendations to your new rheumy and asking the question about Rec 5 might be worth it. There have been a few people on the forums managed entirely with depot injections because of doctor preference and gastric problems - one was a GCA patient.
Is your current rheumy concerned about the dose? I've been back at 15mg since last September after a flare that stirred up cardiac problems - I don't have the slightest concern about it and my rheumy is pretty laid back too. But now I have a pacemaker I'm about to try the downward path again - it is bound to have sorted out the nasty effect reducing was producing!
Steroid resistance has also been mentioned to me but no one has ever suggested depot injections. Is it worth pursuing in NHS or is it just depends on your consultant? Like Griggser I’ve never been pain free. Ive read the 2015 recommendations but it doesn’t sound very conclusive about the injections. It is another option at least so I’ll ask about it at next appointment on 3rd June.
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