Polymyalgia -help

[Lancashirelass07]

Have just been diagnosed, worried about taking the prednisolone at 20mg daily. Has anybody split the dose into twice daily ,or have I to take it one go.

Hope I feel better soon been rotten now for months.

I am really worried.

[piglette]

I am so sorry you have been diagnosed with PMR. It is normally recommended that you take pred all in one dose in the early morning, although some people find that splitting the dose works better for them. It is really a matter of trial and error to a certain extent. PMR is life changing so pamper yourself and don’t overdo things, steroids are a miracle drug but you still have the underlying illness, PMR likes respect!!

[DorsetLady PMRGCAuk volunteer]

Hi , and welcome.

As piglette says recommended time is morning - with or after breakfast - so try that first.

Hopefully it will have good effect - but as stated you still have the underlying illness so don’t go bananas when you get a new lease of life!

Some of the side effects - if you read the paperwork are a bit daunting - but doesn’t mean you will get all of them - or even a few - apart from the chubby cheeks which most people get!

You probably are overwhelmed at the moment - so when you feel a bit more settled come back with questions - sure you’ll have plenty - and maybe read this - but perhaps not today!

healthunlocked.com/pmrgcauk...

Just take the medication - and each

day as it comes - there are plenty of people on here who will help you through this new stage of your life.

[Lancashirelass07 in reply to DorsetLady]

Many thanks for taking the time to reply.

[Kymandbob in reply to DorsetLady]

This forum with people who have such a wealth of knowledge is a fabulous support as the medics are frequently lacking in real knowledge or are too busy/ overstretched to spend time discussing issues that arise.

I was finally diagnosed in December 2018. I started on 15mg Prednisolone and felt like a new person within 3 days.

Following advice from Dorset lady and others I have slowly tapered and am now at 7.5mg. I have a most of Prednisolone's unpleasant side effects but have managed to control the weight gain by reducing my carb intake and exercising sensibly.

I am hoping that I will be lucky enough to go into remission at some point in the not too distant future.

Best wishes to you at the start of your journey. My advice is to take each day at a time and if you feel tired etc, rest as much as you can...fighting PMR does not work as I have found out!!!

[scats]

Don't worry we all feel the same at first. Many of us have never been ill before and now we're in pain and being prescribed this awful medicine. Coming to terms with being ill is the first major step and it's scary. Everybody here has survived this first step and are here ready to help you get through it too. Your prednisolone will become your friend .

Finding this forum is a good first step because you will always find someone here who can help you. Good luck on your journey.

[Lancashirelass07 in reply to scats]

Thanks hope the pred works ,think I have had this for a few years.,so looking forward to hopefully feeling better, when I overcome the worry.

[scats in reply to Lancashirelass07]

If you're like me you think of course you're aching you're getting old. Then one morning you can't gat out of bed! We are all different but pred took my pain away in hours it was such a relief. Hang on in there you'll be OK.

[Yellowbluebell]

Welcome to the forum. Although you are probably in shock still there is always someone on the forum to help advise you. Any question is reasonable if it worries you.

Pred is not the bad guy everyone first assumes and its the one drug able to give us our lives back after months and often years of pain. I personally take my pred in one dose every morning as advised and have no side effects. Giid luck YBB

[Lancashirelass07 in reply to Yellowbluebell]

Hi ,more than shocked ,anxious and scared ,just had second dose ,but no improvement yet ,I know it's early days ,but reading some posts it worked within hours Must be to impatient.

[daworm in reply to Lancashirelass07]

if you get through day three with no improvement you better go back to the Dr...you should feel much better by then, at least I did...hope it kicks in soon!!

[Rosina1871]

Hi there. Sorry you’ve joined our club but everyone here is so supportive. I started on 20mg in January and took my tablets all in one go in the morning with food. I’m now on 6mg and doing ok. I’ve been very careful with diet, low carb and low salt, and managed to avoid weight gain. I really hope you will feel better soon. I got instant relief after a few hours on 20mg . Good luck

[Lancashirelass07 in reply to Rosina1871]

Thank you for your reply ,feel better knowing how others cope

[Highlandtiger]

I started on 20mg in May last year. I’ve always taken all my pred in the morning without difficulty so try that first. If it doesn’t work for you then you can speak to your GP or ask the experts here about splitting your dose. But go with the normal advice first. Don’t worry if your relief isn’t quite as fast as some other people who get it straight away. It took me 4 days but it’s magic when it comes. And as others have said we were all terrified starting it but eventually we all realise pred is our friend. Good luck.

[Lancashirelass07 in reply to Highlandtiger]

You are right I am worried,but it helps a lot knowing Iam not alone thanks for replying so quickly.

[Hidden in reply to Lancashirelass07]

Try not to worry too much as it's not good for the PMR. You will feel better and pred isn't the monster it's made out to be, recent research confirms it's not as bad as drs or patients think it is. For now, just rest if you can and let it clear the gunk out if your system🌻

[SheffieldJane]

Hello and welcome. Finding this forum is your first piece of good luck. You will find it an amazing source of information, experience, comfort and support.

You can experiment with your dose if you like. I have always taken mine first thing in the morning with organic Greek yoghurt and a little honey. This has suited me and facilitated sleep at night. You may well be feeling a bit whizzy at the moment, this settles in time especially as you begin to taper down your dose. Plenty of advice available on that here. Someone will always answer your questions, however trivial or odd you think they are. Keep in touch.

[Lancashirelass07 in reply to SheffieldJane]

Thank you for your advice ,and replying so quickly glad I found this site ,have been really worried.

[cranberryt]

I am new to PMR as well. 20mg was also my starting dose. I take it with breakfast without too much trouble. The only issue I have had is extra fatigue which makes me want to go to bed a little earlier than normal and some nights I wake to go to the bathroom and cannot get back to sleep. I keep my headphones nearby to help with the insomnia times. But other than that, so far, the prednisone has been a life saver... my pain was almost gone in a day or two. Have you started your prednisone yet? Are you feeling any better?

[Lancashirelass07 in reply to cranberryt]

Thanks for replying so quickly ,no I will be taking my first dose tomorrow morning keeping fingers crossed.

[Hidden]

Hello Lancashirelass

Welcome 🌷 l wrote to you this afternoon & ‘lost’ the Post in the ether!

Anyway, sorry to hear about your diagnosis but you’ve found us at the beginning, so Well Done.

I well remember holding those 3x5mg tablets in my hand & apprehensively wondered about taking them.

The best advice l can give you is to take them as directed in a morning as they can keep you awake so splitting the dose is not a good idea. It is recommended that you taken them before 9am to mimic the body’s natural production of Cortisol.

You will read about people splitting the dose because of pain breakthrough but you are only at the beginning of your journey so stick to what your Doctor recommends.

If you have any questions don’t hesitate to ask.

Kind Regards

MrsN

[Hidden in reply to Hidden]

I have lost 3 messages today. Long ones. Best for recepient but a pain when I spent ages writing them and linking relevant docs with them.

[spearce]

Just to add to the many.Welcome to this brilliant forum. Firstly don't worry if you don't get the usual immediate effect from pred (with me it took over a week).Secondly some people recommend taking it at 2am, so I do this (after a pee and a small bowl of yogurt) as it can make the early mornings easier. Thirdly do what works for you and remember, no question is too silly to ask and no one here will ever put you down!!

[Lancashirelass07 in reply to spearce]

No improvement yet after second dose . Was a bit worried when some say it worked immediately .but always was impatient. You have given me hope. thanks.

[Cecily13]

I hope you find the pred as good as I did. I felt a lot better after just 1 day on 20mg. People differ I know, but don’t be afraid of the pred. Hopefully you have a supportive GP - mine was brilliant. She didn’t know a great deal about PMR but did loads of research and took a real interest in me. The only side effect I suffered was increased facial hair. Stay in touch with this group- I have only just joined and wish I had found the group earlier. Good luck!

[Lancashirelass07 in reply to Cecily13]

Thanks for replying ,I have just taken my first dose , been worried all night . But onward and upward.

[Hidden in reply to Lancashirelass07]

Good Luck 🍀 l can remember very well that feeling just try & keep yourself occupied if you can.

MrsN 🌷

[Highlandtiger in reply to Lancashirelass07]

That’s good. You’ve taken the first step. Now try to relax if you can - difficult I know.

But just remember that not everyone gets the pred effect within hours so please don’t get down hearted if you don’t. I started on a Tuesday and it didn’t come until the Saturday but it did come. Others got it in a matter of hours. But either way try to stop worrying if you can. As Poopadoop said stress often makes PMR worse. Just try and let the pred do its job.

[Lancashirelass07 in reply to Cecily13]

Thanks for your good luck wishes. Need them no improvement yet but only second dose.

[Darcy2000]

I did start with one dose but found that it didn’t cover the 24 hours and I would wake at 4am very stiff. I now take 15 mg am and 5 after dinner ..big improvement

[Fredddie]

Hi,

I am a new member too...... well since 27 July 2019.

It all came as a bit of a shock however I've gleaned so much information from PMRGCA and the wonderful support from everyone. So my advice is to make good use of it.

My personal experience was 2 weeks of awful pain which unfortunately didn't work on a lower dose. My doctor upped it to 40mg which has given me my life back (sounds dramatic but its true). So I guess it is trial and error as we are all unique. Obviously I would have liked to have started on a lower dose but it wasn't to be for me. I also take 20mg am 20mg pm as taking in one amount am didn't get me round the clock till following morning. Having said that I may be able to try again at some point as the inflammation is coming down.

I am hoping when I see my doctor in a weeks time (more blood results) we maybe able to begin tapering (very very slowly). It maybe too early - I'm keeping open minded.

I have also changed my diet removing Sugar and most Carbs because I was addicted to Sugar, My gut feels and skin feel so much better and I know it helps with the inflammation, I know it sound drastic but I don't want to experience that horrendous pain again - so trying to help myself as well.

Good luck on your new journey - I have physically turned down the volume a few notches to help myself from becoming over tired - so be kind to yourself.

[Lancashirelass07 in reply to Fredddie]

Thanks for replying I hope my 20mg work, been worried enough about taking that , no improvement as yet.

Does help talking to others on this site. Family don't understand.

[Fredddie in reply to Lancashirelass07]

Hi I hope it does too, however if you are in pain always talk to dr. Hope the sun is shining and have a lovely afternoon ☀️😊

[daworm]

I was terrified of taking prednisone...started at 20mg...now after a couple years down to 4mg, never really had many of the horrible side effects a person reads about.."the devils tictac's.." some moodiness, lots of peeing, perhaps a few other things hard to tell whats PMR and whats caused by the pred....I think you'll see that its essential and effective...

[Lancashirelass07 in reply to daworm]

Thanks for replying it's good to know I am not alone , having taken my second dose ,but no improvement yet. Hope it's going to work soon.

[dillydally1]

hi, welcome to this wonderful forum. I started pred the middle of july 2019, it took 3/4 days to take effect. has everyone says all journeys are different and a step at a time is best. hope you get some relief soon xx

[PMRpro Ambassador]

The total is the same - but the effect achieved is the important factor. You won't be at 20mg forever, you will start to reduce to fins the lowest dose that gets the same effect - but you DO need to know what you CAN achieve with that starting dose.

[Sam5373]

Hello, am sorry to hear that you have been diagnosed with Pmr. If you are having stomach issues, I have found that I put my dosage of 12.5 in 1/4-1/2 teaspoon of peanut butter swallowed whole with liquid and eaten with breakfast that I have no stomach issues at all. My cholesterol has gone up a little bit but have not had any stomach issues since being diagnosed in May2019. Started with 10 mg Pred up to 20 mg and now down to 12.5. I also started taking Qunol CoQ10 and fish oil to help lower the C reactive protein marker in my blood. My c reactive protein dropped I feel a bit stronger and much less weak since starting the CO Q10, after about a month. I take one in am and one with dinner, same with the fish oil. A caution however, I mistakenly waited more than a 24 hour period between taking the Pred and I had a terrible, painful reaction in my abdomen. I took the dosage (again in my peanut butter) and 30 min later the pain was gone, but never want to experience that again. Hope any or some of this helps. I just found this site also. I am older (66) and this is the first time I have felt really sick in my life. The first few weeks were terrible, but you will feel better. Try and just rest as much as you can. Please check with your Dr. before adding the COQ10 and fish oil.

[Lancashirelass07 in reply to Sam5373]

Thanks for replying any tips are welcome second day ,but no improvement yet .hope it kicks in soon

[Hidden]

Hi Lancashirelass

How are you feeling after taking your first doses of Pred?

MrsN 🌷

[Lancashirelass07 in reply to Hidden]

No improvement as yet,expecting or wishing for too much to soon maybe.

Thanks for asking

[Hidden in reply to Lancashirelass07]

It’s only day two, so don’t worry, just wanted to check in with you 🌷🌷🌷