PMRGCAuk

2am steroids

Hi everyone,

I took my Pred at 2am last night, was grumpy and cross preparing a cup of tea and steroids at that time, however, I got back to sleep quite quickly and slept through 'till 6 am. Woke up feeling more like myself pre polymyalgia, with little pain!! Going to keep this routine going as long as it works. Thank you to all for very sound advice. Thank you DorsetLady.

Sue 😀

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Suedeshayes I do agree with you that this works. One of the tips I picked up from our guardian angels on this site. Because I am a poor sleeper it is easy for me to get up at 4am and have my breakfast and take my steroids. I then can go back to sleep for another hour or so and am far less stiff when I get up properly. I usually have porridge so I assume the milk helps with the sleep. Might not work for everyone but certainly can be helpful.

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I am also a bad sleeper. Oatmeal calms me down during the night when I get up at random hours. However, once I get up to take 5:00 am Pred dose I am up for the day. After lunch I rest, may take a 10 minute nap and go to sleep early. My night life is basically shot since PMR. Schedule is good if I were a baby nurse!

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Sandy1947 I agree, with this sort of early start a night life is out of the question. I think there is a theory that grannys' evolution is hard wired that we sleep the same as babies so that we can take the strain off working parents. Luckily my grandchildren are all too old to need me!! Never was a party person anyway. Give me a country walk any time.

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When people say, "Have a good evening" I laugh to myself. I do enjoy the quiet of early morning. PMR has simplified life...no longer getting ready for work, long drive, etc. Just figure out which exercise class to take! Then I only last for about 30-40 minutes!

Life changes especially with PMR.

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Hi Sandy, I'm actually quite good in the evenings and have managed theatre and cinema. I do have to have a lie down in the afternoon to prepare for that.

Sue

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Lucky you! I took a Nia dance class and a stretch class. Went in with shoulder and arm pain, came out with none. Resting now because I'm going to a dinner at 6:00 pm. The topic is taking care of the elderly. My mom is 94. Her mental capacity just started to decline. She went from the gym to the walker. She has a boyfriend. My sister and I just got her live in help. When I go to see her (an hour and a half away) I get sad because she is losing her vitality and so am I with PMR. Life changes take adjustment. I'm a bit slow in that department!

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Oh sandy, please don't lose your vitality, your photo looks like someone full of vitality and adventure. I too, looked after my father, but he was quite inspirational, loving life and fought leaving it right to the end. Your mum is surely losing her vitality, that's normal, but you don't need to follow that path. You look gorgeous, and you are your priority. I wish I could be inspirational for you, but, girl, go for it.

Sue x

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Thanks! You are an inspiration! I just had an interesting date! He does nature (landscape) projects all over the world. I am in Manhattan and do find the men more exciting than NJ! We will go to a museum and out for dinner in 2 weeks.

I think I will probably sell my house in NJ and move to NY. Just not making any decisions for a while. Hopefully, my business will be sold by November. With retirement being so new and only 3 months into PMR I think going slow is best.

I am going to Charleston, SC, Boston and Dallas between now and December. Celebrating my "big" birthday with friends and family.

Thanks to you, my vitality came back!

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I have a huge smile on my face. You are a huge inspiration for me too hearing that. Well done, life is just too short and we need to grab it by the you know what's!! As a newly single woman, I have needed my friends. What I said to you, they said to me. I hope to be in New York next year. Let's keep in touch. I'm from Scotland. Kindest regards, Sue

Hi everyone friends,and what I said to you

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Can't wait for you to come to NY! Yes, we'll stay in touch! I love being single! It's not as much fun with PMR since I can't go as fast as I used to!

Keep smiling! I'll let you know if I stay up during the dinner and discussion tonight!

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Great news about your pain relief, but I can relate to the grumpy at 2am feeling! I did it for a while. If you're on the plain, white pred tablets, they should be taken with food to protect your stomach, so maybe have a bit more than just a cup of tea. Some people take yoghurt, if not their breakfast like Brixhamhampster.

I take the gastro-coated pred at bedtime with yoghurt and it works just as well for me. I believe the pred is released 5 or 6 hours later, so at the right time for the inflammatory cytokines and I'm pain-free in the mornings. These tablets are available on the NHS and my GP is happy to prescribe them, even though they cost about 6p each instead of 3p for the plain ones - we're so cheap!! They are available in 5, 2.5 and 1mg.

You may have read here that there's a modified-release form of pred that PMRpro and others are on, but it's not available on the NHS. It's prescribed in Europe and USA. We could get it prescribed privately in the UK, but it's £1+ per tablet! What I'm doing is trying to mimic that with the gastro-coated pred and it seems to be working for me.

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When you say bedtime, what time are we talking? I'm in bed usually by 11 so have to set alarm for 2am. Are most people later than that?

Sue

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My bedtime is 10pm, so that's when I take the pred and yoghurt. I don't think the timing is too critical. I wasn't happy taking my uncoated pred at breakfast, at say 8.30am and it not kicking in until about 10.30am, which is 6 hours after the inflammation is at its peak - and I found the 2am wakening just too disturbing for my sleep, which isn't good at the best of times. What I'm doing now is the best solution for me.

I'm sure you'll find a solution that suits you well.

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Hi,

Good, hope it keeps working. As Rugger says they should be taken with food - just a spoonful of yogurt, a small plain biscuit or even a glass of milk might suffice.

As a matter of interest are you on a PPI -lansoprozole, omeprazole or the like. If so, that will protect your gullet as well which is why it's recommended to take food with uncoated Pred. Or alternatively requested the enteric type, but as said that takes longer to give effect.

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Which means you can take it before bed - and it is working nicely by morning.

I was told that there had been a suggestion in the UK of a head-to-head comparison of the enteric coated and Lodotra/Rayos types but the company that makes Lodotra wasn't playing. Which we suspected meant they knew it would be found it worked too! Enteric coated/gastroresistant is only available in the UK as far as I know so it wouldn't make much difference you'd have thought.

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I have to take pred in liquid form as all the tablets contain lactose and I'm dairy intolerant. Does this make a difference as to the best time to take it? I generally have mine after breakfast and just before coffee (which does make the coffee taste a bit peculiar).

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Hi. I'm still a beginner here and haven't quite found the best time, having taken it at midnight last night and didn't sleep. I did find 4am better as pain was easier in the morning. Sue

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No - you just have the advantage that it will be absorbed much more quickly but then it is a case of when is convenient for you early in the morning. I would take it considerably earlier than 8am - the sooner after 4.30am you take it, the less inflammation has been caused and the less work it has to do. And your coffee will taste better...

Lots of people take it early and then settle down for another hour or two - by which time it is working and the morning pain is shorter.

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Hi. I'm on the omeprazole, but not sure what the other thing is you mentioned. I'm actually having a couple of nights at a hotel and was going to eat the biscuit left out with teas and coffees. However munched through it at teatime, completely forgetting it was for my 2am meal!! 😂 Got some for tonight.

Thanks, Sue

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Hi yes that is a PPI - there are various brands - all end in **prazole. Sorry using shorthand!

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Hi Rugger,

Sorry to keep asking more questions but taking it at 10, do you sleep right through till morning? And dies any pain arrive during the day? Sue

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Sorry, that's tried should say does.

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Word, eek predictive text just takes over!!

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You can edit you know. Click on the box with the downward pointing arrow.

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I tried the 2am routine for a week or so , but found I was having a breakfast at 2 and then another at 6 . Pain free early morning, but then dropping off for a snooze in my office through out the day !!!!!! Not good . Now back taking them at 6 which is a lot better, and keeps me pain free till bedtime .

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Hi. Thanks for that. I'm actually just going to sleep and take steroids whenever I wake. Setting alarm to wake me up when I've finally got to sleep seems a bit daft!

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