Hello yet again. Sorry for the barrage of questions, but my (possibly prednisone stimulated?) brain just keeps cranking them out. I had a virtual appointment with my doctor today and because I had had a slight increase in hip symptoms last week, she thought I should stay on the initial 15mg dose of prednisone for another 2 weeks. That would make a total of 6 weeks. My symptoms subsided but she said it is best to wait until 2 weeks after my temporarily increased symptoms (which occurred after a three mile walk on a hot day). She wants me back to baseline for two weeks before commencing the taper. I did have some intermittent bursitis-like pain in my lymphedema hip years prior to my developing PMR, as well as aches and pains from ms, so it gets difficult to sort out exactly what my baseline was and how to interpret what’s happening now with PMR. Is six weeks a usual and expected time to stay on an initial dose? I understand that there is much individual variation, just trying to see if I should lobby for less time. The sleep deprivation is a real problem for my ms. I also want to approach the taper with the best chance of having it work.
Thanks in advance to everyone who replies. I feel extremely well supported by this amazing group.
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Donna5658
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Your doctor sounds like she knows what she’s doing. I needed 6 weeks on my start dose of 20 mgs for PMR. You may have done better on 20 mgs though. A slow gradual taper has the best chance of working. Have you looked in FAQs for tapering regimes? Everybody likes DorsetLady’s.There have been loads of threads about insomnia with posters’ solutions. It is a big drawback for Prednisalone. The consensus seems to be Magnesium supplements and audiobooks ( comforting ones). It is hard to work out where your pains are coming from sometimes and which ones are caused by PMR, especially as Pred helps arthritic pains and similar. I found that my PMR pains and stiffness had a character of their own though, always in my shoulders and groin. Very disabling.
Never be sorry for your questions. Lots of people are happy to share their experiences and useful links. You have already learned the hard way that you must pace your activities and have plenty of rest. You may feel better but Pred is just dealing with the pain and inflammation, it is not touching the underlying disease. You have a significant illness even if you feel quite well. Patience is hard to achieve but it is key to managing PMR effectively. Good luck and ask away.
You've probably been advised to take a calcium supplement. You might be able to improve your ability to get to sleep by taking it a little while before bedtime, preferably with something like a small helping of yoghurt or similar. I accidentally found that taking a bedtime dose of calcium has virtually (for several years now) eliminated my lifetime intermittent insomnia! And be glad your doctor is not trying to hurry you along with a taper. Getting things properly under control is very important and you'll do better later.
Morning Donna, sounds like you have a clued in doctor, which is good. I don't think six weeks is an overkill for your starting dose and as SJ says, for you 20mg may have been better, but certainly whatever dose you started with won't have been helped by a three mile walk, hot or not, at this stage.
You have a long term systemic disease which is controlled/managed (hopefully) by Pred but not cured. A slow build up to exercise will be neccessary and don't be tempted to rush it.
Lots of relevant information in the FAQ's as well as tapering plans for the next stage in this journey.
With time you will get used to sorting out what pains are likely to be PMR and what are likely to be something else.
I discovered many years ago, with my OA, that tossing and turning in bed and worrying about not sleeping did nothing but cause more stress and even less sleep, far better to get up, change position , have a drink, read a book, relax/doze in a chair, listen to the radio and maybe get back to bed, but importantly don't worry about it. That worked for me even when I was working full time.
If it's a real problem the doctor may be able to help with the lack of sleep.
No problem with questions and there is usually someone here at any time of day or night.
Hi, Donna. Just want to chip in with my sympathy for all you are having to deal with. I agree with the others that you should stay on 20mg for two weeks: it's a very short time in the great scheme of things and will do no harm.Sleep deprivation is awful and many of us have experienced this. Things will settle down in time but that is no consolation when you are suffering, I know.
The most important thing for now is to get the inflammation in your body under control.
Personally, I'm not in favour of prescribed sleep aids but your supportive GP will discuss with you.
I agree, too, with the views on exercise. It's important to move but not to the detriment of your already stressed muscles. The time will come when a three-mile walk will literally be a walk in the park but for the time being attempt much shorter distances.
Gentle stretching exercises will be of benefit. Look here:
Listen to your doctor, another 2 weeks is a good plan…..and more likely to make following tapers easier - which is what you want. We see too many people rushed to taper too quickly following initial dose, it’s refreshing to hear the opposite.
Have a look at this link re sleep (and read replies for others tips) -
It is the sort of time that was usual not so long ago - fashions come and go. But we feel that the speed some doctors try to get patients off pred now does no-one any favours in the long run. I'd accept it - and build up to the next walk slowly!! I can walk a mile - if I do significantly more the hip bursitis gets woken up!
Just wanted to check back with you about the trochanteric bursitis. Do you feel that it is separate from your initial PMR? My doctor wants me to stay at 15mg until I am back to baseline, but occasionally if I overdo, I seem to aggravate the bursitis in my hips. I’m pretty sure I was experiencing this especially in my lymphedema hip prior to the PMR, so not sure if these episodes of increased hip bursitis mean that I am not well enough controlled at 15mg or if it’s just my baseline bursitis. They don’t seem to last very long. I am supposed to start the slow taper next week after 6 weeks on 15mg, but want to avoid doing it too soon.
I think it is sometimes exacerbated by the PMR. I finally got to start physio this week and the physiotherapist agrees with me the trochanteric bursitis is not something isolated - it is part of greater trochanteric pain syndrome which affects the whole lower back and sometimes further up if left untreated. And PMR affecting the muscles and fascia in myofascial pain syndrome adds to it all. It is quite a complex problem - but the physio says that leg problems almost always stem from somewhere further up - she found signs of something going on about the L5 vertebra.
Sometimes more pred helps - but like everything to do with MPS and GTPS, there are better ways of managing it if you can access it - physio and manual mobilisation in particular although neural therapy seems to achieve a lot for me.
Well I think your GP sounds very sensible. Well done for that! I struggled with the sleep deprivation at those doses but it DOES pass. In the night I laid there and closed my eyes and thought of nice things and took some deep breaths. At least I was physically resting which is key. No rush to decrease. Good luck. Sounds like you’ve made a good start xx
My solution is - get a comfortable set of headphones, a radio or appliance that allows you to select a programme and then listen. I can guarantee you will never find out “who dunnit” as you will drop off during the story.
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