Pred at lunchtime & flu: Newbie questions, sorry... - PMRGCAuk

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Pred at lunchtime & flu

Pixix
Pixix
94 Replies

Newbie questions, sorry! Doctor said to take Pred in morning with food. I never eat breakfast and don’t fancy any food that time of day, but know Pred must be taken with food! Now I’m on a diet (as also diagnosed prediabetic) and really resent having to eat at that time! Every day I’ve been getting flu like symptoms at about 4pm which lasted a few hours. Then I changed my Pred intake to lunchtime & now getting flu symptoms every night! Last night it felt exactly like real flu! Is this linked in some way? Are flu like symptoms normal, please? I also feel like I’ve got pulled muscles in thighs, & some sciatica like pains ‘in the butt’! Sorry, but just had first two weeks on 15mg Pred & not sure if it’s stops all suffering, or just the neck shoulders & hips problems! Thanks in advance for advice!

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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi.

Guidelines say initial dose should give you at least 70% improvement.

If you’re not getting close to that, then either not PMR, not enough Pred, your body not getting full benefit of dose or you are trying to carry on as if you are cured. You’re not - you have a serious illness and need to ease off a bit - the Pred is only addressing part of the problem - not all of it.

Can you face a couple of tablespoons of yogurt in the morning to take your Pred with?

The symptoms you are getting sound as if your Pred is not lasting long enough to get you through the day. Options - you could try splitting dose - say 2/3rd breakfast/lunch time, remainder before you go to bed.

Sometimes it’s a bit of trial and error and sometimes it’s takes longer to work for some - but if it continues you need to speak to doctor.

Meanwhile have a look at this -

healthunlocked.com/pmrgcauk...

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Pixix
Pixix
in reply to DorsetLady

You’re right. I’m ignoring it and carrying on as usual. I’m used to a full and very busy active day and I’m still striving for it! We were hiking for nearly three hours through hillside boggy wood yesterday and I didn’t feel good and was in a lot of pain by half time. But it was only sunny day in weeks and we always hike the same beech Woods for the colours, sighting the drags and ponies! I’d been walking the day before too and it was like walking on jelly. But I didn’t want to let my husband down. I’ve waded through fibromyalgia and thought I could do the same with PMR, but I’m thinking I’m wrong. 70% of symptoms have gone as I had dreadful stiff neck shoulder and hip muscle pains and aches and they stopped within 4 days of starting Pred. Today I’ve done a ton of cooking for my new Keto diet and housework despite only 2 hours sleep and flu aches. I loathe yoghurt. To me it tastes like the inside of a tin can, and I realise everyone else loves it. But will try milk and splitting the dose, thanks so much for your reply and I will follow your web link. I have another pill that I take around 2-3am so this will be easy! I see the doctor in 9 days, too. Thanks again

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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Pixix

Hi again,

well you’ve answered your own question really - you cannot carry on as normal. You don’t have to give up what you enjoy, but you do have to limit the activity to what’s achievable!

By all means walk, but not so far and not through difficult terrain...and not two days on the trot!

You are not letting your husband down, if you can’t do it, you can’t do it! He wouldn’t expect you to hike if you had a broken leg would he? Just because he can’t see the problem, doesn’t mean you don’t have it!

You need to let him know what your limitations are, you can’t expect him just to know. Let him read the link I gave you, if he’s willing...the more he understands the easier it will be for both of you.

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Pixix
Pixix
in reply to DorsetLady

I will let him read it, thanks. Problem is that I waltzed straight through 4 car crashes (none my fault) and kept up a very busy working job, travelling round Europe. Then struggled on with fibromyalgia and barely altered my way of life, so I think, in fairness to him, he just felt that life would continue as normal with PMR, too! Not his fault! Problem is that nearly all my issues have been ‘invisible’ it makes it much harder, I find!

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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Pixix

Yes invisible illnesses are very difficult to cope with and for others to understand ...even our nearest and dearest!

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Pippah45
Pippah45
in reply to DorsetLady

You could ask yourself if your husband would carry on if he felt like you feel - not many would!

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Pixix
Pixix
in reply to Pippah45

No. He had bad infection in May and did nothing for weeks. It’s different for men, whatever you say they are still not the ones who notice the wash bin is overflowing ! I let ours build up last week until the lid was propped open and he didn’t notice it! When I asked if he could put a wash on he said yes just sling it down to me. I want him to notice it needs doing! Plus they are not expected to see dust or cobwebs but somehow we are! He’s wonderful but...

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Pippah45
Pippah45
in reply to Pixix

I rest my case Pixix! As the others have said you really need to function within your own limits. I called off a trip to help my daughter this weekend as I knew it would be too much for me to drive the 300 mile trip and dispense help to her as she is in quite an emotional state - we would undoubtedly have ended up fighting which wouldn't have done either of us any good! I will stick to the telephone this weekend but I am trying to get down there next weekend. It takes quite a lot of determination to look after yourself properly and actually say NO! Or a big shock when you have really collapsed.

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Pixix
Pixix
in reply to Pippah45

Um, yes. I’m not good with No. hubby has just announced we will probably not be going to fireworks this evening as it’s too wet. We never miss them and both love them, but I realise it’s best for me to stay indoors dry and warm! Hope your daughter will be OK. But that’s a long distance to go for sure! We always plan in advance which is good but makes it harder to cancel especially if hotel costs are included in the plans!

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PMRpro
PMRproModerator
in reply to Pixix

Have you ever tried Greek yoghurt? Especially the Total variety if you can get it. Bears no resemblance to normal yoghurt, not sour, tastes like cream.

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Pixix
Pixix
in reply to PMRpro

No, in fairness I haven’t. I’ve heard of lots of people who love it, but I had the idea it was probably full of calories. So I avoided it. Until now. Thanks, on the shopping list.

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PMRpro
PMRproModerator
in reply to Pixix

It is less the calories that matter when you cut carbs on pred anyway - but Total comes as 0% fat too if it worries you. I use it in cooking to avoid flour - whipped with an egg it replaces white sauce in cauliflower cheese, moussaka etc, something I learned from a Swedish reciped years ago.

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MamaBeagle
MamaBeagle
in reply to PMRpro

That's a brill tip Pro!! I'm definitely going to try the egg and yogurt - my fridge always got Aldi's full fat Greek Yog in it!! Got some sprouts yesterday and I love them in a cheese sauce and was wondering how to ditch the flour! Will have them on a gram flour pancake - yum yum

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PMRpro
PMRproModerator
in reply to MamaBeagle

Mmmm - that sounds good! Do you roast your sprouts? All brassicas roast beautifully - really nutty sort of flavour.

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MamaBeagle
MamaBeagle
in reply to PMRpro

I have done.....and may just do that.....mouth watering already!

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Poopadoops
PoopadoopsModerator
in reply to Pixix

I couldn't agree with Dorset lady more. You have a serious illness where your body is attacking itself. I try and understand things in a simple way that may not be formally correct in medical terms, but based on how my body responds and enough knowledge to be dangerous, 😉

Your vascular system, therefore your body isn't up to the usual rough and tumble because your muscles and the bits that connect them, are not getting the blood/energy they need. When we exercise (and age) we tear tiny fibres in muscles etc but the blood supply "heals" them. So normally you may be a bit stiff after a tough/normal walk but your body is set up to resolve those little injuries and supply energy and movement. At the moment your body isn't resolving those little injuries and so the muscles get tired and may feel soreness for longer and with more intensity. That's the flu type aching I suspect and I get like a low grade fever if my body or mind is stressed. It's called delayed onset muscle soreness. In your case when bog walking your body WAS saying enough, but your mind was saying push push push. Your body has already won that competition, which is why you are on pred. But the pred needs your minds help. You can give it that help by not pushing SO hard. Allow your body to repair itself.

Pmr is not like fibro, which is basically screwed up messages to the brain that fire off pain signals you can push through and not do much damage to your body (18yrs experience). PMR and pred has the potential to do damage to tendons etc and pushing your body on can do that damage. When you plan walks plan ones with different lengths and when, or preferably before, you feel that feeling coming on take the shortest route back. It's not forever and hopefully if you do it slowly you can build up the stamina.

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PMRpro
PMRproModerator
in reply to Poopadoops

With Skinny Jonny as example - PMR and in a wheelchair, back to 5km running in 18 months and currently up a mountain in the Himalayas ...

healthunlocked.com/pmrgcauk...

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Poopadoops
PoopadoopsModerator
in reply to PMRpro

Absolutely. Has he come back down yet?!

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PMRpro
PMRproModerator
in reply to Poopadoops

No idea - takes a week or three you'd think?

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Poopadoops
PoopadoopsModerator
in reply to PMRpro

It's slower than you think. But it's normal rest I would think as no acclimatisation. Back through the various camps.

Pixix you might want to read jonnys profile.

healthunlocked.com/user/ski...

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Pixix
Pixix
in reply to Poopadoops

Thanks, I will. I have spent a fair amount of Time in a wheelchair in my life already and have recently enjoyed time out of it when I thought I didn’t have anything other than fibromyalgia to worry about and could go and enjoy my retirement!

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Pixix
Pixix
in reply to PMRpro

Thanks. Will read tomorrow.

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Pixix
Pixix
in reply to Poopadoops

Yes, thanks. You are right, I am just used to shoving pain to the back of my mind and carrying on. I never really believe that fibromyalgia is real, a lot of doctors don’t believe in it and one agreed with me that there are a lot of misdiagnosed cases. The low grade fever comes at the start of the flu like symptoms. The first sign is sweating, whatever the weather or heat, then the aches start in muscles, mainly in legs. I am starting to learn a lot but, to be fair, I had to concentrate on diet learning and start it fast as my GP told me to. He hasn’t actually even explained what PMR is. He told me he thought I had it but the blood tests would show. He phoned me to tell me I have PMR but didn’t tell me anything about it at all. But I’m a quick reader and have had a lot of great help today from everybody. Off to bed to enjoy another night of flu, as I overdid it all today, too. It’s not necessarily an easy choice when you’re in the middle of a lot of projects! Thanks.

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Poopadoops
PoopadoopsModerator
in reply to Pixix

Pmr will still be very active. That has low grade fever in any case.

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Pixix
Pixix
in reply to Poopadoops

The things I don’t know! More to learn. Thanks

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Noosat
Noosat
in reply to Pixix

No it is not an easy choice. My daughter had to tell me to stop thinking I was "wonder woman". Was not doing it consciously, but had always managed to push myself through adversity. PMR has made me be more cautious and listen to my body. This does not mean I always think the worst is happening, but try for a true evaluation of what is happening to me. I do believe the mind is a most powerful tool, which can help us deal with adversity of all kind, however, the pain is real. I try to assess the degree and proceed from that point. In almost 12 months, I am down to 4mg of prednisone, and have to tell myself "one small step at a time." Good Luck and don't hesitate to tell your husband you need help. He doesn't willfully ignore your condition, needs you to tell him how you feel and what you need.

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PMRpro
PMRproModerator

At a guess taking it so late in the day means there is too much for it too do to get a decent result. A new batch of inflammatory substances is shed in the body about 4am or so. The sooner you take the pred after that the better - ideal is actually 2am so it is ready and waiting. Yoghurt or even just a glass of milk is often enough to take it with.

You should get a 70% global improvement in symptoms with the starting dose within a week or so - and if you don't you probably need to try 20mg. It is quite important to get the inflammation under control and cleared out at the start. But taking the pred as early as you can often makes a bit difference compared to taking it much later.

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Pixix
Pixix
in reply to PMRpro

Thanks. I had no idea about the inflammatory substances she’d around 4am, very interesting as I have other inflammation issues resulting from car crash injuries and often I wake with bad pain around that time. It may be that the dose is not quite high enough. I have had this problem with other drugs. Also I’m not behaving at all and continuing as if now I’m on Pred it must mean the disease is under complete control and I can run my life like a bull in a china shop! I was going to decorate the kitchen this week but I just haven’t managed it! Thanks for your help!

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Joanbill13
Joanbill13
in reply to Pixix

I am just like you. I feel better on pred and so carry on as normal. Only I'm not!! Im finding pmr a difficult thing to take in two months on from diagnosis. Haven't started tapering yet. More problems I guess

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Pixix
Pixix
in reply to Joanbill13

Oh how lovely to hear somebody else is fighting against it all! I may start tapering in 9 days time but the dr warned it may be by only half a mg! Plus I don’t think it’s so likely now I’m still having the part time flu! I’ve always been on short doses for chest infections, longest one 3 months (and I put on two stone). Good luck, it’s hard to accept it I think, I’m finding it impossible to do so.

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PMRpro
PMRproModerator
in reply to Pixix

We have all been there - I promise. It is hard, but it is essential to get your head round it or you will simply be miserable. And there is no need for that.

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Joanbill13
Joanbill13
in reply to PMRpro

I'm trying but finding it all difficult. Your comments are very helpful and this site is so good. It's all so scary when you first find out what PMR is!

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Pixix
Pixix
in reply to Joanbill13

Hear hear. Especially when my family is already putting up with my fibromyalgia and now I’ve prediabetes as well.

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Joanbill13
Joanbill13
in reply to Pixix

Me too. I don't want to upset my husband or family with the details but need to say things sometimes.

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PMRpro
PMRproModerator
in reply to Joanbill13

Say it then - they also have to learn.

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Thelmarina
Thelmarina
in reply to Pixix

You sound so brilliantly energetic and positive. Love it! However, bearing in mind the symptoms you describe I’d suggest you forget all about tapering until well after Christmas and take advice from here as to how to do it. There is no hurry - this can take several years to go into remission and hurrying the tapering process can result in flares with you going back to square one. Why not sit down with a coffee and think through your timetable for one week? Put in everything you would normally expect to do - then filter the activities through PMR. So walks shortened, not every day, gardening an hour instead of two followed by a sit down to let your body recuperate. Use sit downs to prepare for Christmas, make cards, wreaths (not funeral..), find recipes. In other words spend your time in slightly different kinds of action. Listen to your body and not your gorgeously hyperactive brain 😀. You’re great. Have fun 👍

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Pixix
Pixix
in reply to Thelmarina

You talk a lot of sense thanks! I’m just known for my high activity level and amazing amount of stuff that fills my life and I’m fighting the changes my body needs me to make! I’m well used to chronic pain, but learning this illness is different. My positive has flown out of the window today but it will be back!

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Hildalew
Hildalew
in reply to Pixix

Hi Pixix - About 'spoons'

I think you would enjoy and may find helpful a piece about the 'spoons principle' - about understanding the limits to our energy resources - the link has been posted on here by many contributors

However I can't send it to you because I am such rubbish at keeping such links in my ramshackle 'system'

So, other PMRers who are reading this, if you have the link, would you be very kind and send it to Pixix?

I STILL don't really appreciate or acknowledge the amount of resources, whether physical, mental, or emotional energy, that any activity takes and have sometimes had some really 'down' days - a bit like a PMR hangover - when I have tried to use more resources than I have.

And, I totally agree, it IS difficult to tell people you just can't do something.

Just recently I told a friend, who knows that I have this condition but finds it difficult to understand, that I had 'run out of walking points' for that day - and he immediately understood. I am going to use the 'points' idea whenever I can from now on.

Good luck Pixix, it does get easier but I'm afraid the condition is a very persistent companion.

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PMRpro
PMRproModerator
in reply to Hildalew

It and all the other fatigue links are here:

healthunlocked.com/pmrgcauk...

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Pixix
Pixix
in reply to PMRpro

Thanks very much indeed.

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PMRpro
PMRproModerator
in reply to Pixix

In case you miss it - this post

healthunlocked.com/pmrgcauk...

has a collection of links to articles about fatigue and managing it better. Which is also very useful to give to family and friends who don't "get" it either.

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Pixix
Pixix
in reply to PMRpro

Got it now, thank you so much. So many lovely responses, I didn’t expect so many, & all so helpful.

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PMRpro
PMRproModerator
in reply to Pixix

Ah well - in that case ...

You can't do that I'm afraid. You have a new normal and you have to make lifestyle changes as a result. It isn't giving in - it is being realistic about living well with a chronic condition. It can be done - I think I live pretty well. But I gave up decorating a long time ago - before PMR if the truth were told. I fell off a stepladder - my husband didn;t even come to see what the crash was. And I said no more...

DIY accidents in over 60s account for some amazing amount of 999 calls. And leisure accidents of all sorts are about a third of what A&E deals with!

theguardian.com/society/201...

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Joanbill13
Joanbill13
in reply to PMRpro

I have given up decorating now. Luckily my son is doing it

for me. Still gardening gently though

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Pixix
Pixix
in reply to Joanbill13

We are renovating an old cottage and completely building a new garden. We are also very keen travellers and have been to Italy, Colorado and Croatia this year! My hobbies no longer fit, I fear.

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Joanbill13
Joanbill13
in reply to Pixix

I'm still hoping to go to Australia in January to visit son and grandchildren. As long as I cope with the flight it is more relaxing once I'm there.

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Pixix
Pixix
in reply to Joanbill13

We are due to be in the States in January, fingers crossed. My brother lived in Australia, but sadly died last Christmas age 64. He had 40 years there. Hope you get well enough to go!

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Koalajane

Go to Australia. We have been twice since diagnosis. Remember to use special assistance which means you don’t queue for security, get whizzed through airports in a wheelchair or buggy and are not so frazzled.

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Joanbill13

Thanks for the tip

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PMRpro
PMRproModerator
in reply to Pixix

Travel is fine - it was gardening and decorating that had to be handed over!

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Joanbill13
Joanbill13
in reply to PMRpro

That sounds good!

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Pixix
Pixix
in reply to PMRpro

Fair comment, and I appreciate there will have to be adjustments.

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Devoid
Devoid
in reply to Pixix

Just to add I think you may need to consider the pre diabetes a bit more too . Not eating regularly is not going to help that either.

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Pixix
Pixix
in reply to Devoid

Oh yes, but my main concern there is to reverse the prediabetes with diet. I haven’t regularly eaten breakfast for 42 years, so it’s not going to come naturally. I take your point and thank you for making it, it’s hard to take in both that, weight loss, steroids and PMR all at once.

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Poopadoops
PoopadoopsModerator
in reply to Pixix

Low carb, high fat will help all round.

You can do the free 7 days on the link below to get the gist. I assure you slow and steady is the way....i have done fast and strict it doesn't work. Pred will keep pushing you towards type2 but if you make low carb adjustments you should be able to reverse prediabetes. You need the fat when lowering carbs to reduce the speed the energy is release from food.(good) Fat and fibre are your friends now.

lowcarbprogram.com/

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Pixix
Pixix
in reply to Poopadoops

I’ve kept very very low carb this week, and tried new recipes and all OK. Will only weigh once a week! Thanks for the link will explorevitvthis morning.

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Meggsy
Meggsy
in reply to Pixix

Hi Pixix, like you I don’t eat breakfast as am not hungry at that time. I take my pred at 4am with half a banana and that works for me. As you already wake at 3am maybe you could try taking your pred then. I’m sure a glass of milk would be fine if you are ok with that. The pred would then be doing its job by the.time the cytokines attack. 15mg was not quite enough for me initially so GP upped the dose to 25mg which did the trick. Have tapered reasonably smoothly since - presently on 6mg - diagnosed Feb 2018.

If you can cut out the whites - rice, pasta, bread and potatoes, also cakes, pastries, biscuits,lollies,soft drink your weight should stay under control. Eat plenty of good fats they help you to feel full. Daily I take flaxseed oil, hemp oil, half an avocado, MCT oil and slather olive oil on vegetable stir fries and salads. I also eat nuts and fatty fish. Fermented foods are good for the gut biome. Have not put on any weigh and blood sugar is good. I do manage daily walks and some gentle stuff at the gym. Some days I feel lethargic and quite happily do nothing - catch up on my reading. I have to confess I still enjoy my glass of red but have managed to restrict it to weekends.

Along with the wonderfully knowledgeable people here, I found Kate Gilbert’s book Polymyalgia Rheumatica and Giant Cell Arteritis very helpful.

All the best and be kind to yourself.

Marea 🌻

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Pixix
Pixix
in reply to Meggsy

Excellent reply, thanks. Yes I’ve had none of those foods since Monday but have had oily fish, chicken, bacon nuts, full fat cream and cream cheese etc. I am starting to take pred at 3am tomorrow as I’ve just had another night of bad flu symptoms. Will find alternative to banana and milk as neither allowed on the Keto diet I’m following but that’s not hard. Now I know I’m not expected to eat a full meal it’s easier, plus I take omeprazole twice a day. Will phone dr on Monday to see if I should increase the pred. I feel like it’s proper flu and I’m going to die, plus even less sleep and struggle. I’m still in bed that’s three nights in a row. We were due to go out tonight but I guess cancelling fun goes with the disease!

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Koalajane
Koalajane
in reply to Pixix

You can miss out meals. I miss out lunch. I was diagnosed type 2 three months after my PMR diagnosis. I was put on gliclazide and went straight on to the low carb high fat diet. 6 months later I was taken off gliclazide and cope with diet and exercise. My.hba1c on diagnosis was 99. It has now gone down to 35. I miss out on lunch because from testing I have discovered that my steroids spike the sugars around 1200 to 1600. It works for me.

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Pixix
Pixix
in reply to Koalajane

Well done, very good news. Aiming to do the same. My knowledge was based on my elderly aunt with diabetes who must eat lunch and quite promptly, but she has other issues as well and her diabetes is rarely under control! Too busy reading up the diet, next to read up is PMR, then diabetes!

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PMRpro
PMRproModerator
in reply to Pixix

Yes, but it is probably because she uses relatively old fashioned dietary advice of eating specified amounts of carbs with fixed mediation - and it would be essential if she were on insulin. The latest advice has finally come around to reducing carbs instead of adding more medication - a concept I have always struggled with!

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PMRpro
PMRproModerator
in reply to Pixix

I still don't eat breakfast - unless it was paid for in the cost of a hotel room! My pred now is different, needs to be taken at night within 3 hours of dinner so that fits well. But I didn't really have a problem with morning pred just using a dollop of yoghurt or similar.

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Pixix
Pixix
in reply to PMRpro

Going to try Greek yoghurt this week and hope I like it. Taking my pred at night will be easier for me, too. Plus I take a second omeprazole at bedtime so stomach problems will be covered. Thanks, and yes I eat about three free breakfasts each year!

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Nuff1

Re the diabetes quey - be aware that DiabetesUK states that Hba1c results should not be taken into account diagnostically where patient is on medication such as steroids which can cause spikes in blood glucose levels

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Pixix
Pixix
in reply to Nuff1

The diabetes result came in with the initial bloods that helped diagnose the PMR with inflammation markers elevated. I had not taken any pred then. But now I realise it will be hard to get a new reading because I’m on pred! Everything seems to be working against itself, somehow.

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PMRpro
PMRproModerator
in reply to Pixix

The label doesn't really matter - it is the Hba1c level that shows the sort of degree of blood sugar your body is facing. Raised BS is raised and potentially causing damage whatever the cause so it is a case of trying to reduce the average. You can't do much about the spikes, you can do something about the rest of the causes of BS rising: a low carb diet is crucial.

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Pixix
Pixix
in reply to PMRpro

I’m doing it seriously don’t worry. I know It was extreme and not normal but Ive lost three friends through diabetes and realise how bad it can be . One of those died aged 17 because she refused to accept her illness. I watched her Mum suffer each day. I was getting very thirsty before the tests and having sweats which are partial symptoms of diabetes. Now I have a chance to reverse it.

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Koalajane
Koalajane
in reply to PMRpro

Yes and the good thing about being labelled pre diabetic or diabetic is you get the annual checks, with diabetes you get foot checks and eye screening

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Pixix
Pixix
in reply to Koalajane

Hadn’t thought about that, but I already get a health check at the surgery (bloods, chloresterol, urine, blood pressure etc) because I have lung problems. I think you usually get them at our surgery when you are 70+ anyway, but I’m only 63...last month! Feet & eyes check sounds helpful (Dad has macular generation which wasn’t caught & was nearly blind when he died, so my optician checks that yearly).

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yogabonnie

Except for the Newbie part I thought I wrote this in my sleep last night! I don't eat breakfast and I take and have taken my prednisone every morning without a problem.. I eat around 11 or noon. And then it is usually a smoothie. I just take it with 2 glasses of water and then I have my coffee I think I did have flu symptoms more often at the beginning but I do not remember the timing of them I know I awaken around 3:30 or 4 in the night but after much grumbling do fall back to sleep. AND for the last two days and nights I have had terrible sciatic..which IS sciatica and nothing to do with the PMR. but for you...it might be that you need to have started and should go up to 20mg and see if that helps. Good luck! stay with the forum it helps!!!

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Pixix
Pixix
in reply to yogabonnie

Good to hear from you. Yes, ice on The bird Bath this morning my husband tells me so it is start of my winter sciatica! My arthritic hands are much worse this morning too! At the moment the 8 hour bursts of flu is the worst thing to put up with and constant changing sheets trying to get them dry in this rain etc just adding to the workload! Hubby helping a lot though. I hate drinking water but drank 2 litres yesterday (I don’t drink tea or coffee, but somebody here recommended a nice apple cider vinegar drink).

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Hellyowl

OH brings me a cup of tea and two biscuits in the morning to take my pred. I worry about eating sensible rest of the day but at least my biccies help me enjoy having to take pred. I have a busy job and life and find this works for me.

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Pixix
Pixix
in reply to Hellyowl

Yes. I can’t give up my busy life easily. I worked 40 years for early retirement and we moved to our dream location. Biccies are out on my present diet but little cubes of cheese will do it!

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Hellyowl
Hellyowl
in reply to Pixix

Cheese in bed ultimate feast

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readingbooks
readingbooks
in reply to Pixix

A couple of little cubes of cheese with my pred was my solution. Easy to take even if you are not hungry in the morning and skip breakfast.

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Pixix
Pixix
in reply to readingbooks

I’m a cheesaholic, thank goodness!

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PMRpro
PMRproModerator
in reply to readingbooks

Now THERE'S an idea ...

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Ported

Hi

For me to lessen the side effects of pred I have taken to making breakfast a big thing .. (easing off on lunch) if I sandwich my tablets between muesli and a piece of toast it releases much slower so I don't feel totally wired between 2 and 5 pm. I tried taking later but it effects my sleeping too so this has proven best for me.. if you are not used to breakfast it could be a step too far! Hope you find your way to cope.

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Pixix
Pixix
in reply to Ported

Yes a step too far but partly because I was eating cereal, sugar, or toast for breakfast before I found out the prediabetes bit and none of them allowed on current diet. Although the blood tests were taken st same time the PMR result was given to me a week before the prediabetes so I’d started the breakfast regime but wasn’t enjoying it!

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Ported
Ported
in reply to Pixix

Not sure.. but slow release pred may be available which may dilute your flue sensations?

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Pixix
Pixix
in reply to Ported

That’s very interesting, plus I see coated is available. I have had a lot of stomach pain and reflux issues in the past ten days. My doctor doubled my omeprazole but it’s not doing the trick!

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PMRpro
PMRproModerator
in reply to Ported

There is no such thing as "slow release" pred - there is plain immediate release pred and delayed release pred which is the same but the coating delays the release for 4 hours but both are released in the stomach all at once. Then, in the UK only, there is gastric-resistant pred which passes through the stomach before being released. The absorbance does tend to be spread over a longer period, the rise in the blood level is somewhat slower than the sort released in the stomach, but not that much longer. A peak is reach and the fall is exactly the same as for any other form of pred.

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Daffodilia

Isn’t breakfast whenever you break your overnight fast? Can’t you take Pred after your first substantial meal of the day?

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Pixix
Pixix
in reply to Daffodilia

Going to try 3am first, but if that fails it will be lunchtime as that’s my break the fast time!

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PMRpro
PMRproModerator
in reply to Pixix

The only problems with that are 1) the pred may interfere more with sleep taken that late in the day 2) the daily inflammation will be well entrenched by then - and it may take a long time to get symptom relief.

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Pixix
Pixix
in reply to PMRpro

Yes, fair comment. I will discuss the time release pred with my doctor as somebody suggested, but guess it’s dearer so not easy to get! I truly believe I’m not taking quite enough & having been paying it enough attention doesn’t help. This afternoon, for the first time since I started the pred my shoulder pains have returned, though it much less severity. Warning signs, I’ve made French onion soup, then it’s watch movies & crochet afternoon. Thanks again S.

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DianeA1
DianeA1
in reply to Pixix

Hi, for 21 months now since diagnosed wi PMR, I wake at 2am to take my Pred wi unsweetened apple sauce and have been fortunate to fall back to sleep with no problem. All the best!!

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Pixix
Pixix
in reply to DianeA1

Thanks, that’s great. I’m so used to half waking and taking a tablet I think it will fit well!

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sennetta

If you prefer to fast in the morning and have prediabetes, have a look at the wisom of Dr Jason Fung following his findings during his work as a consultant nephrologist in Canada will rid you of the diabetes . His approach my well suit you. The medical establishments both sides of the pond are being very slow to respond to what is staring them in the face as people all over the world are proving them wrong about their "fact" that diabetes is an ireversable chronic disease. People are reversing their diabetes by doing exactly the opposite of what they are being told to do by the so called establishment experts. You'll then need to fit your pred around all that.

About two years ago I was diagnosed with PMR and diabetes and was feeling as fed up as you probably are now. But I'm now off the pred, feeling fine and have no diabetes.

PS I used to be bury the pred (I enjoy the past tense there!) in a tablespoon of full fat live yoghurt and swallow the lot with an open throat. Don't get too hung up about the fat - it's carbs that cause the obesity problem not the calories in and out. As humans we need the correct dietary fats to function.

Good luck

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Pixix
Pixix
in reply to sennetta

Yes I agree. The fats help me to feel less cold and hungry I think but aren’t the main items. I will look at Dr Jason Fung’s findings. Very helpful. Yes, I’m at rock bottom this morning, so the only way is up. Lovely to hear your success story though, really happy for you.

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Cross-stitcher

Hi Pixix, you've already had some great advice but no-one has mentioned the Spoons Theory. I'm not good at attaching links, but try the following, or put "Spoons Theory" into the Search box at the top of this posting.

butyoudontlooksick.com/arti...

I have found pacing my days and my activities the only way to cope easily with both the initial high Pred doses an the subsequent tapering. After explaining this theory to my OH, he did realise that I could not just carry on as normal. Good luck with your journey, and remember that the tortoise won the race!

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Pixix

Thanks very much indeed. Sounds good and it’s nice to know somebody else has trouble explaining to their husband that you can be sick without looking sick! Tbh sometimes I wish I could just put my leg in plaster...without breaking it...it would be so much easier!!!

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Oumaof2

Hi pixix,. Would you be happy to try Yogurt with ground cinnamon ?... I take mine around 3am, so ready to leap ( only in my head) out of bed around 8am... You only need two spoonfuls... I put Pred on the spoon and cover with yogurt.... Followed by a good glug of water to get Pred moving.... Cinnamon is a really good flavour with yogurt...

Hope you feel more comfortable soon... Early days are trial and error... It will improve... All the best... Lena 🌻

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Pixix
Pixix
in reply to Oumaof2

Yes! I’ve got the yoghurt on my order for delivery! Have cinnamon in cupboard & read on the diet that cinnamon is good for you! (Just prefer it in an apple pie, that’s all!) I’m not allowed to go into shops right now, as I haven’t had my flu jab & my lungs are very bad because of the rainy damp weather! I was told by my lung consultant to avoid shops during winter months, & to get it all delivered (husband also at risk, asthmatic!) I’m on antibiotics for five months each year. Just started last week & they always make me a bit depressed to start with! Thanks, I’m hoping to improve soon, I must admit.

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