I'm new here and just had my first week into Pred 7.5 mgs daily. 1tab times 3. I'm a night owl and so 1-3/4 am is all the sleep I get. I then read, listen to music until 8.30am when I feed the cat and have my own b/fast. I rest during the day but can't seem to sleep. During wakeful hours in the night I have pain in my head, neck and arms as well as my temporal spots. I always have back pain separate from Pm/GCA and have been waiting on an MRI since the first lockdown last March. Query spinal stenosis? Part of that problem is that I have a pacemaker and need a radiologist there to make any adjustment needed. I see my rheumy for the second time on the 27th.
I know I will be 90 in April, but I am determined to get back on my feet, and now use a pedal exercise because of loss of muscle mass in arms and legs. I have all the help I need at home. and know I am very fortunate but I think if I can get more sleep at night I could walk down the drive under my own steam and get some fresh air, having been self isolating since last March. Thank you all who responded to me with such expertise and advice. Bless you all.
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merril
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You were right , that is the correct dose. probably because of my age and the GP's reluctance to my having Pred. I know she is looking after my best interests, but that is why I asked for a referral to a rheumy. So I am on a two week test by which time I will have seen the rheumy again. Thanks for the advice.👍
Have you considered your internal clock may need resetting? I saw a program a couple of years ago, either Trust Me I'm a Doctor or another program with Michael Mosley, describing how some elderly people with sleep problems were given different ideas about how to reset their circadian rhythm. One of the key things for all of them was exposure to natural light early in the day, but there were other things they did, which varied from person to person as part of the experiment to see what was most effective. Also the usual things, like avoiding screen time for at least an hour before bedtime. I can't put my hands on the program right now but I'm sure it was BBC and because of delays in seeing BBC shows on this side of the Pond it is going to be several years old now.
The other issue at the moment of course is your feeling uncomfortable which will disturb your sleep and I think we've already had the conversation here about the strange way your pred for PMR dose has been prescribed. Your dosage should be effective in making you much more comfortable physically and that alone would help with sleep. It certainly helped me. But then in early days I was taking 15 mg with my breakfast and enjoying an excellent response. Later, when I discovered you aren't supposed to take a calcium dose at the same time as pred (they interfere with each other), I switched my morning dose (calcium) to bedtime with a small snack, like a big tablespoon of plain yoghurt, and discovered that my lifelong intermittent insomnia was miraculously cured, and has remained so for the last five years!
That's given me another avenue to explore, and I could google it later. However I didn't have a sleep problem before and decided it must be because of the Pred. So many tangles to unravel and try out and I would like my last few days to be as painless as possible. Wishful thinking perhaps, but I still have the motivation to try, and with all the advice on here I might still manage a few more xmas's in the states.😀
At least wo hours away from your pred, whatever time that is. And preferably with some food - with fat to improve absorption. Doesn't need to be much, a cup of tea with milk is enough
I'm not on Adcal, don't live in UK. I take calcium citrate which happens to have D3, magnesium in it as well. The dose I take is two capsules = 250 mg calcium. As I'm an early morning pred person I take one dose at lunchtime and the other at bedtime. Sometimes I take a different supplement with more micronutrients for bone health which has 300 mg per two capsule dose; it has calcium hydroxyapatite.
You are really admirable in your approach to these challenges. There are no contraindications with Codeine. It always makes me horribly constipated though and as you know it is an addictive drug. It can be very comforting though. Is there some reason that you can’t have enough Prednisalone to control your pain? Please discuss this with your doctor, on the phone or email, another tablet could make all the difference to the pain that is keeping you awake. Good luck!
Thank you SJ I am looking forward to tonight! To answer your question, I think the low dose and the two week test may be something to do with my GP's reluctance to my having steroids and as I said before, I know she has my best interests at heart. The rheumy knows this too! I see him again on the 27th.
I wonder whether taking the co-codamol at bedtime would help you sleep longer. I take it you're on the 500/30 tablets. One other thought is that prednisolone can make you quite "high" and given your age, maybe even a low dose could be stopping you from completely relaxing. (Sorry for lack of proper punctuation - my shift key is not working :D)
I don;t have any advice for you, wish I did. Just wanted to let you know that I will be 93 on Sunday and am getting along quite fine after 25 months of PMR. I started on 20 mg of prednisone and am now down to 2mg. Last month I had an aortic valve repair (stenosis) and am doing well. Your sleeping pattern seems strange to me. I go to bed early, if I don't have company and get up about 5a.m. Then rest and read after lunch. I bought a peddle machine to use for the cold days that I have to stay inside. I prefer walking and do so when possible. Good Luck to you. I hope you are able to get some night sleep.
Thank you Noosat, that was very encouraging. I, too, have a pedal machine because of loss of muscle mass, but I am unable to go out alone because of balance and sight problems. Perhaps that will all change when I next talk to my rheumy on the 27th. and he agrees to increase my Pred. Because of lockdown this has added to an already difficult situation. I do admire you👍
Noosat, I am not using my pedal machine today. I had a very bad night last night with my back and think that I may have increased the time on the machine beyond MY limit. Did you find this happening?
I think so. I only started a few days ago. I had read that having small periodic bursts/4 seconds of speed on a stationary bicycle greatly increased muscle strength, so 2 days ago tried it. Since then I have had muscle aches, which are now going away. I think I will just peddle at my usual rate until I get used to doing it before I do the "bursts" again. Had a good hour at the park with Lily to-day, I sat down twice for a few minutes and to make 'phone calls, but otherwise moved along steadily.
No actual replacement. It was done by TAVR method, going in to heart through the 2 large arteries in my groins. The new valve is placed inside the old one forcing it to function in opening and closing. Before operation the valve only opened at the size of a pencil instead of at size of a nickel. Hope this helps. I was in hospital for 2 nights, check ups a week and a month later, now do not have to see that particular doctor until November
Thanks for info, that really cleaver stuff. Excellent what they can do these days. My existing valve is really furred up, not nice and smooth so while it works it makes the heart work harder. The specialist said it requires replacing because the heart is working too hard and can eventually cause further problems, I think I have gone of the radar since the Covid outbreak. I will chase them up when pressure is off the NHS. Whenever that might be.
The procedure I had is called TAVR. It was started about 10 yeas ago in the U.S. I don't know about elsewhere. My breathing is better/easier when walking uphill. Now I have to strengthen the muscles in my legs injured by PMR. I am trying to walk as much as the weather will allow.
I understand you should not take opioids and anti inflammatories while taking Preds.as they have an adverse effect on stomach lining . Are you taking a stomach protector ?
Opiods are probably OK with pred but they don't usually help with PMR - it is NSAIDs that are discouraged because of potential gastric irritation. Enteric coated pred does help avoid that.
Thanks PMR pro. Only wanted to take Co-codamol to help me sleep. Nsaids are out for me, and I am just recovering from withdrawal of Morphine sulphate and ora- morph, prescribed for shingles after first lockdown. Don't want sleeping pills even if I could have them. I need to wait until I see Rheumy on the 27th. So many questions to have answered and to have prioritised, because my head can't seem to grasp them all or even remember them!!!
Yes it does help me dose off. Spoke to the manager at Boots and he suggested one, OTC, it had no effect. He had also suggested a new designer drug which I refused at the time. CBD oil I think. So I used Co-codamol, but that didn't work last night. So had only three hours sleep. I'll speak to my own pharmacy tomorrow and ask about the calcium /magnesium tomorrow. Again, my thanks.
All the very best Merril. I feel, like others, that your doctor is prescribing your steroids in a very peculiar way and the dose seems too low to begin with. I understand her reluctance to over prescribe but this way of prescribing could just end up protracting your condition, without sufficient to affect the symptoms. Let us know how you get on. Love your attitude that you want to do all your can to help yourself, regardless of age. 💐
I have been on Predisolone for 3 years. Got down to 5mgs a day and was in so much pain I’m back up to 15mgs. I take 2 Co codamol every night so that I can have a relatively pain free night. I hope this helps xx
Often if a flare is due to overshooting the dose you need while reducing, adding 5mg to the dose where you flared is enough rather than going back to the beginning. At 7-10 days you can then drop straight back to just above where the flare happened. Saves a lot of reducing again.
Hi Merril. I am 67 and was diagnosed with PMR three years ago. Am presently on a low dose of Pred., 2.5mg a day but did start off high. I broke my arm badly in the Summer - first time ever in hospital.
To answer the question in the heading of your message, It was safe at the time I broke my arm for the Doctor to prescribe me Cocodamol with my Pred, for the relief of additional pain I was having. In fact excruciating pain NOT caused by PMR.
However, I cannot say whether it is wise to take Cocodamol long term, along with Pred. My arm improved so I came off Cocodamol gradually. It is my understanding that if you have pain as a result of PMR, that particular pain is mainly relieved by the Pred, reducing inflammation of the blood cells, and not by other pain relief medication like Paracetamol or Cocodamol.
Hope things improve for you. I see an NHS Rheumatologist for the first time this week - only after I asked my Doctor, nicely, to refer me to more of an expert after three years!
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