3 months history of increasing body aches, particularly shoulders. Hard to stand up.
Had a hospital appointment pending, they were good and after usual tests prescribed Prednisalone. 15mg. Not yet started after reading alarming side effect reports..
prescribed Prednisalone. 15 mg but really worried... - PMRGCAuk
prescribed Prednisalone. 15 mg but really worried by potential side effects. Would really appreciate advice, reassurance etc.
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Scaredofpred
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47 Replies
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DorsetLadyPMRGCAuk volunteer
Hi, and welcome
The patient information leaflet for any drug has to list all potential side effects that have been reported [sometime by just one or two people] …that doesn’t mean you will get all of them, or even half a dozen.. but if you do, all can be managed.
Not one wants to take Pred, but if you don’t, your illness is likely to get worse over time, and you may well develop GCA, and much serious associated condition.
Plus the unmanaged inflammation PMR creates can do your body a lot of damage.
Maybe have look at this-
healthunlocked.com/pmrgcauk...
.. and please take the Pred, it does get a bad rap, but it will manage your PMR, and give you a better quality of life overall…
Thank you so much, this is what I needed to hear.
PMRproAmbassador
Hi and welcome.
The PIL and the internet list ALL the effects notable numbers of people have ever complained of/ No-one gets them all, some get very few or none. I have been on pred for 15 years and have no identifiable bad effects of pred - in contrast, it gave me my life back. Just as many on it because of GCA still have their sight and probably would be blind or at least partially sighted without pred.
Many of the so-called pred effects can be caused by PMR itself - I had several in the first 5 years I had PMR when I wasn't taking pred at all. And some disappeared as soon as I started pred.
PMR leads to immobility if untreated - and that alone raises the chances of weight gain and developing osteoporosis. The unmanaged inflammation also causes damage to your body. It isn;t as simple as pred bad, no pred good. And for PMR there is not much choice of medications - none in the UK.
Thankyou, feeling less scared.
Hi, I fully agree that the list of possible effects is/can be a it scary, but as DL says it is a list of "possible" effects. You may get some, a few or none whatsoever. What you can't get away from is that PMR is only controlled by Pred and if you don't take it things will get worse and you will need even higher doses to get it under control. If it helps I've been on Pred, for PMR, for coming up to four years and have had "no" side effects at all during that time. If you are unlucky enough to get some, most of them can be managed by changes to diet and lifestyle.Lots of info in FAQ's and don't hesitate to ask questions. Nothing you ask here is regarded as silly.
Quick edit, I don't regard Pred as a "devil pill" or horror medication it gave me my life back very quickly after starting it. All medication, including the over the counter stuff that people take without thinking about it has/can have side/long term effects. You have to weigh up, does being able to have a qood quality of life outweigh any "possible" side effects.
Thank you. This really helps.
After fourteen months of undiagnosed PMR, nearly crippled by the end, I couldn't wait to take my first dose of pred (15 mg). Some months earlier I'd plugged my symptoms into Google and come up with an ailment which needed steroids and immediately dismissed the idea as I thought I couldn't possibly have anything so serious I'd need that medication, and had promptly forgotten about it. Within a few hours of taking that first dose I thought to myself, it can't possibly be helping already? On the third morning I was puttering around and realized that I had not had to carefully plan and execute my painful four-step process of getting out of bed. All of my aches and pains had vanished like a miracle. Even so I kept thinking there must be something less tricky to use. But there isn't and I made my peace with pred. You might enjoy this little account:
healthunlocked.com/pmrgcauk...
Thank you!
Pred acted like magic for me in 15 hours 26 minutes. Give it a go.
Hi there,I was prescribed 15mg Prednisolone 18 months ago for Polymyalgia Rheumatica. Similar symptoms to yourself. I'm almost 65 now and after gradually tapering to 8mg, I'm back up to 12mg after contracting Covid. The efficacy has been very good. I couldn't lift my arms above my head, walk, or lift a cup of tea, I was in so much pain and so weak with the Polymyalgia but after a few days of the Prednisolone It was like a miracle cure and the pain, weakness and stiffness had almost gone. The side effects have been 2 Cataracts( which have been operated on and now gone) insomnia ( I'm used to it now, and it doesn't bother me, I nap in afternoon) and I'm aware of being tetchy, but for the best part it's under control. I take Omeprazole and Vitamin D and Calcium to counteracts the Osteoporosis. So for me Prednisolone is a lifesaver. I will be cutting down again to 8mg, but find below that the Polymyalgia Rheumatica comes back with a vengeance. I hope this helps.
Hi and welcome…
Couple of comments… 8mg may be the level your PMR actually needs at the moment…you will get lower someday… but no point in pushing too hard. Give yourself a break for a couple on months - and then try using a slower tapering plan and only 0.5mg a time. Some enlightened doctors even suggest you don’t try to reduce through winter months.
See most popular slow tapers here -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Plus at current dose, your adrenals need to start thinking about working again - so have a look at this - and a slower taper will help that as well -
healthunlocked.com/pmrgcauk...
Thank you. This is so helpful. I'm so glad I found this site. It's so good to feel part of a community who understand have so much valuable information. Have a great day☺️
You’re welcome….you too!
Absolutely excellent link about the adrenal and their function. Thak you.
Just a quick question - what calcium tablets do you take? I’m on trial of Pred at 15mg for what’s almost definitely PMR and am keen to stave off osteoporosis etc. but can’t find a calcium tablet without other ingredients (zinc magnesium vitamins) added. Is there such a thing as a calcium only supplement? Thanks.
Plenty to look at online…
But if you have PMR you should be prescribed a VitD/Calcium supplement as a matter of course alongside the Pred … any reason why that’s not okay?
Oh it's absolutely fine, I just wanted to take a recommended tablet as there's so many variations out there - I did ask the GP and he seemed to say a calcium-only tablet would be best. But maybe when I have my review after 4 weeks on Pred (and hopefully get this diagnosis confirmed so a treatment plan can start), I'll get a prescription for Calcium supplement - will ask him! I've been taking Vit D3 in the winter for a few years already.
A quick question in here…. I have been prescribed 2 calcium and vitamin d tablets per day. Is it better to take them both in the morning with Pred or one in the morning and one in the evening?
One in the morning and one in the afternoon/evening. And always 2 hours at least away from pred, never with pred as it interferes with the absorption of the pred. We used to say pred for breakfast, calcium with coffee/lunch and dinner. You can't absorb more than about 500mg calcium at a time,
Thank you. That is so helpful. My doctor prescribed taking two in the morning then after a month or so I read that it’s best twice a day but have never known about not taking with Pred.
PMRpro has replied…. And paperwork should say am and pm… as well as foil packet
… and this -
The usual calcium/vit D3 supplements prescribed by GP are only calcium and D3, AdCal and Calcichew are examples, others are mentioned in this list for vegetarians and vegans. Some supplements contain gelatin but aren't mentioned here
sps.nhs.uk/articles/choosin...
Thanks - will look out for AdCal & Calcichew ...
Ask at any pharmacy. And ask your GP to prescribe it and get it free.
"I did ask the GP and he seemed to say a calcium-only tablet would be best"
Honestly - can you find a different GP who seems to have the slightest clue? The combination pills are best - plain calcium supplements are NOT better, having vit D alongside is beneficial to the calcium being absorbed AND where the calcium ends up in the body. There were scare stories a few years ago about how calcium supplements in young healthy women were associated with calcification of arteries due to oversupplementation - an effect not seen in women who took combined supplements. Plus, we aren't young and healthy (in the same way at least) ...
Thank you - will follow your advice !
If you can, take Vitamin K2 (not K1) as well. This is likely not going to be covered by insurance but it is an important supplement as it's key to sending calcium to the bones, and unfortunately is often deficient in the modern diet.
It is recommended to get a DEXA scan at the beginning of your treatment so you are able to compare bone density with future scans. All the best.
I’ve been on prednisone for 15 months. My hands shake a bit sometimes. My hair thinned. My fave has that moon face look. I’ve gained 10 lbs. All side effects that are far outweighed by the return of functionality and mobility.
Yes the moon-face and extra chins aren't great, and although I needed to put on weight it's hard to stop it increasing. The ravenous hunger isn't helping ( packet of biscuits with tea in bed during the nightly insomnia!) But I'm feeling much better than when I was size 8 and ill.
You do need to try to drop the biscuits habit - not only does that add to the weight and ravenous hunger problem with pred but it also adds to the risk of developing steroid-induced diabetes. The ravenous hunger bit is due to a rollercoaster with your blood sugar levels and insulin production - by cutting carbs drastically you reduce that effect and so also the hunger pangs.
I was astonished when I realized how much what I;d been eating. Was very strict with myself, and I have to say it wasn't too difficult as I'd happily broken my sweets habit long before so mostly I was giving up grains eaten in a savoury context, and started eating large salads. It was a bit of a surprise that first winter (I started pred in June, so we're talking about February the following year) when I found myself craving kale, of all things! I credit that to a readjustment, a rebalancing, of my gut microbiome. When you eat sweet biscuits you are actually satisfying the demands of your current microbiome, and you can change that, as I found, but only by being very strict for a week or two, maybe a bit longer, depending, but it can be done. Years later I still don't eat nearly the "white" carbs I used to before PMR/pred, a very little satisfies.
Respecting and understanding the potential side effects of steroids is important and healthy. Fearing them is probably a step too far as if it was that bad your GP/Rheumatologist would have made you sign a disclaimer… the drugs affect people differently but doses of 20mg and less are considered ‘light’ and hence should have less of an impact. I started on 20mg then 15mg then 10mg then 5mg and from around 10mg and downwards the side effects were quite manageable and hardly noticeable (in my case). But having said that, there are also invisible side effects so, if you can, stay on the drug as short a time as possible. They sometimes try an accelerated taper on people who start on 20mg or less and and have no blood markers (as was explained to me) but it did not work on me. It took me 6 months to go down from 5mg… good luck!!
Please do not be scared. Turn it around and consider pred as your friend. 15mg is not considered a high dose anyway. It's a life saver and helper. And together with the support of this group you'll be fine.
Thankyou. Fell happier. What a brilliant group
I too was so scared to start pred it took convincing by my GP and husband to take a 7-day trial. The relief I felt about 8 hours after my first 20mg dose was a miracle. I could very simply get out of bed and use the bathroom with ease, unlike how I had been struggling for 6 months prior while undiagnosed without pred.
The side effects remain few for me and quite manageable however, to be honest, tapering down at lower pred dose levels has proven to be a challenge and requires patience. Getting off pred altogether usually takes longer than 2 years (despite what some doctors might say).
Despite us all having the same condition(s) (PMR/GCA), how our bodies respond to pred may very. I will say not everyone gains weight or develops cataracts (two common side effects). I’ve had neither, in fact I’ve lost 35-40 pounds since diagnosis when I changed my diet/lifestyle (eating a low carb, sugar, salt diet and increasing physical activity).
Be patient with yourself during these early times….you are adjusting to your diagnosis which comes with a range of emotions. Control what you can (diet, activity, rest, what type of support you receive and from where/who), and try to let go of the things you can’t control (disease activity and duration, how others respond to your illness, and some side effects).
Brilliant answer. Thank you VERY much
As others have said here, prednisone is really the only effective treatment for PMR, and it works wonders when you start taking it. It gave me my life back after almost two months of crippling and debilitating pain last summer, when I'd be yelling when trying to get out of bed in the mornings, and could barely get in and out of the shower. I worry about the side effects too, but so far, apart from some weight gain and moon face, I seem to be doing okay. I've slowly tapered from 15 mg to 11 mg over the past eight months (1 mg per month), and am also doing things to help mitigate any possible side effects from the pred -- e.g. limiting salt to keep blood pressure under control; eliminating sugar to prevent diabetes and reduce overall inflammation; and taking bone medication, calcium, vitamin D, etc., to help offset the bone-thinning effects of pred. With PMR, it's a case of choosing between the lesser of two evils -- and given how debilitating PMR can be, and how dangerous GCA can be if you develop it, I'm grateful for the prednisone.
mayoclinic.org/drugs-supple...
Hi
Reading the Common side effects in mayoclinic.com, for example, you see about 20 side effects listed, without a % grading for each one.
So, you have no idea which actually is the Number 1 side effect.
It would be helpful, would it not, for the manufacturer to list these Common side effects, in a % order of occurrence.
This would give the reader accurate information.
All the best.
Persevere
Most patient information leaflets do categorise the side effects starting with most serious….
I don't think it is possible to grade them as accurately as that. Common, less common and rare is gathered from the figures reported in the clinical trials and in post-marketing reports but by no means everyone reports their adverse effects and the system would collapse if everyone reported all the things they thought all medications had caused for them. And if you develop a "rare" adverse effect - you don't consider it rare do you?
In the best of all possible worlds we'd know which side effects were most likely to affect us, but as the others say, we're not there yet and perhaps never will be. The accounts I read led me to believe that weight gain and moonface were inevitable. This didn't happen to me, but I did experience some invisible effects. One I think is quite common, elevated blood sugar, another less so, increased ocular pressure. So it's probably wise to look at the possble side effects simply to be aware of what may, but very likely won't affect you personally. Because blood sugar, among other things, is monitored through regular blood tests doctors do, that one is covered. But I had to be pro-active re the eyes, my own GP never mentioning either the possibility of GCA or pred-induced glaucoma.
And even the lists don't give all the information which an individual patient might find useful or even critical. For example, rarely people develop extreme muscle weakness and there are probably ways to counter that although I don't know for sure. Also it's useful to know that apparently effects on the bones occur rather early on in the pred treatment, so calcium and other important supplements which help calcium be absorbed properly, appropriate exercise and so forth, should be started right away, not just a calcium carbonate tablet which we may not even be told should be taken at a time away from the pred dose. Nor are we likely to be warned that medication some may need to take for stomach protection when on higher dose of pred will have a negative effect on bone density if taken for an extended length of time.
After a few months on pred most of us become quite expert in the management of our own particular situation, but the early days are difficult, in part because we are all different. Doctors are probably equally frustrated because PMR is so idiosyncratic. 
Thanks for detailed reply heronNS
The current lists of side effects, for any medication , including Pred, here in the UK, has probably been logged very many years ago, based on a very small user sample?
And, the UK Yellow Card side effects reporting system, is slow and only allows you to report the side effect that’s bothering you.
So, wouldn’t it be great to have an app, that every user can log on to, and rate the side effects bothering them in % order, in a few minutes?
Then, this useful and valuable info, including % rating, will be available to all to read, and factor in, when a particular side effect shows up?
All the best
Persevere99
It would probably be a very interesting exercise. )
Hi. Sorry for this late reply but perhaps this will give you a boost? I have just returned from my second ski holiday in 6 weeks. Diagnosed in 2017 with PMR and possibly GCA, started on 30mg Pred. I've had no significant side effects. My bone density is normal and I've never been good at taking my Calcium with VitD supplement twice daily, despite being a pharmacist!! Pred is a necessary "evil" for us, but for many it's not evil, it's a game changer/ life saver.
Wow thank you. That is so encouraging!
A few days on this wonderful forum has boosted my confidence and determination to beat this . I really appreciate your reply.
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