I'm new here and diagnosed this week with PMR. I have been prescribed 15mg Prednisolone. After taking it for two days and although symptoms eased a bit, I am undecided whether to continue as I had side effects almost immediately. I have encountered Prednisolone before as I had suspected GCA six years ago and was put on 60mg which I took for around three months. As there was uncertainty about the GCA diagnosis, and the side effects were so awful, I suggested to GP that I come off them. He agreed and I did a very slow withdrawal over several months. I have had mild symptoms of PMR over the past couple of years but last week the shoulder and hip pain was so bad that I went to GP. They took blood tests and the Plasma Viscosity reading was high, hence the PMR diagnosis. I am seeing GP again next week and have a list of questions. However, can anyone advise what the outcome of not taking steroids for PMR might be. I don't seem to have the pain as severe as some of you.
Side effects of Prednisolone : I'm new here and... - PMRGCAuk
Side effects of Prednisolone
It was more lack of mobility than pain that made me persevere with Prednisalone. I was literally hobbling around, couldn't get out of bed or a deep chair without assistance. The pain was like the pains you get with the flu and my spirits were very low. All of this was alleviated in 48 hours. I contend with a myriad of side effects and heaven knows the hidden damage that is being done.
There is also the danger of unchecked inflammation to consider and the very real risk to our eyesight, a thought that terrifies me. It's a rock and a hard place really.
Others will come forward with their take on this including people who went for years without diagnosis and others who support their health nutritionally and with various alternative therapies. For myself, I felt that I had no choice really with the level of pain I was in. I'm now gradually reducing the dose with tedious slowness and setbacks.
Thank you, Sheffieldjane, lots to consider.
I had PMR without pred for 5 years. It started as quite mild - I couldn't do step classes as the spring had gone out of my step and I couldn't get onto the step! After about 6 months I couldn't use the cross-trainer for more than a minute without awful pain in my thigh muscles. I got steadily stiffer - I moved to a different gym and started doing aquafit classes which if I was careful was fine and I could move better afterwards. But the fatigue got worse and I also developed hand and foot pain and hip bursitis. I was rarely in no pain and there were lots of things I couldn't do. I didn't realise how disabled I had become until I had a flare and was also stopped driving for another unassociated reason. I was stuck at home - if I couldn't drive there, I couldn't go. I couldn't get on a bus and I could walk to the bus stop anyway!
15mg of pred gave me my life back in under 6 hours. Not everyone responds that fast, some people need a bit more, say 20mg. But nothing would persuade me to go back to no pred - even after 8 years of it. I've had side effects with one sort of steroid, not with 2 other forms. I gained weight - I've lost it all. Most side effects can be managed fairly well when you know how.
The main outcome of not taking pred is the unmanaged inflammation in your body which is probably causing damage to blood vessels - increasing the risk of cardiovascular disease and some cancers.
What side effects appeared that fast?
Unable to sleep, fuzzy head and sore tummy. Thanks for your input PMRpro
Pat, difficulty sleeping can be par for the course unfortunately for some PMR patients, especially in the early days. Try not to have any caffeinated drinks or foods (chocolate) especially in the immediate hours before bedtime.
The fuzzy head is probably something we have all experienced - again, this will diminish.
As for the sore tummy, if you don't already eat 'live' probiotic yoghurt, then do try it. It proved a godsend for me when I was unable to tolerate the PPIs (Proton Pump Inhibitors) that so many doctors prescribe automatically alongside steroids - they, in fact, gave me tummy problems!
Agree with what Celtic has said. At 15mg they should improve some with time - 3 months at 60mg is a long time and no wonder you had problems then.
But if your doctor didn't hand out PPIs - perhaps try some yoghurt (first) or Zantac. If your doctor DID hand out PPIs - maybe that is causing the stomach problem. In the UK pred also comes as enteric coated/gastroresistant tablets and they obviate the need for gastric protection.
Amitriptyline one hour before bedtime (10 mgs) solved my insomnia.
Always taking Prednisalone after food and a tummy coating tablet I can't spell solved the stomach pain.
The fuzzy head, well I think I always had one - paracetamol?
By the way, welcome to this very friendly club that you didn't want to join and good luck with your journey, stick with us.
Pat, there are very many possible side affects related to Prednisolone but no-one experiences all of them and, in fact, a few lucky patients sail through without any bad effects at all.
I am wondering just what "side effects" you are experiencing? It's early days and it is possible that your body just needs a little time to adjust to the medication. Certainly the side effects can improve as the dose is lowered.
I'm sorry to hear that you have experienced "awful" side effects to Prednisolone in the past, but you were then on a hefty 60mg dose at which the side effects can be horrendous initially. I know that from experience, as I was put on a 40mg dose when i was finally diagnosed with PMR/GCA after very many months bedbound. The almost immediate relief from my seemingly paralysed state within hours of my first 40mg dose seemed nothing short of a miracle for a few days, putting me on a high for a while......of course, there were then the inevitable side effects that started to appear but they do slowly start resolving as the dose is reduced.
As to what "the outcome of not taking steroids for PMR might be", there is, of course, the risk to our eyesight from the untreated inflammation due to GCA arriving on the scene. That is exactly what happened to me. At the time, I discovered that whilst on treatment for PMR, there is around a 3% risk of contracting GCA, and that risk rises to around 7% for those untreated. Apart from GCA, untreated inflammation coursing through the body can lead to many other nasty scenarios, including stroke and cancer.
If my experience is anything to go by, I would strongly urge anyone with a definitive diagnosis of PMR to think twice about "not taking steroids".
Good luck, and do come back and let us know how you get on.
Thank you for your info, I will see what GP has to say before I decide.
Hi Patricia,
Would re-iterate what others have said. If it definitely is PMR, then leaving it untreated could, not necessarily will, but could cause you lots of problems down the line. Some most certainly you don't want. Plus you must remember that untreated PMR may morph into GCA - and take it from one who had it - that's not a pleasant experience!
At 15mg you certainly shouldn't get the same degree of side effects than at 60mg.
So think carefully before you reject Pred - sure you will.
Thank you, DorsetLady, one of the worst things when I was on 60mg was the moon face and weight gain. I have recently tried and successfully lost two stones. Do you think that these side effects would still happen On 15mg.
Can't say for sure - I started on 80mg!
And yes I did get the moon face, but didn't put on a lot of weight, and have now lost it all and more. Had other things as well - hyperactivity and lack of sleep initially, Pred induced cataract and slightly raised eye pressures, but it's a bit pot luck really. But one would expect, but not guarantee, that lower doses should produce less side effects!
Really that's not the way to look at it, it's if you need it , you need it! Pred is like most powerful drugs, they all come with side effects of some sort.
I'd already lost sight in one eye, so in reality had no choice, in fact for first fortnight wasn't sure I would retain sight in other, so my main priority was saving that and the side effects were not the main concern at the time!
But I appreciate everybody approaches it differently.
A lot of people on the forums have found that cutting carbs drastically helps avoid the weight problem. I had gained weight with PMR/no pred - just from being immobile and depressed. I didn't gain more with 15mg prednisolone but it redistributed. I did gain when I was switched to Medrol - but when switched to a form of prednisone and I cut carbs I lost 36lbs - all the pred stuff and more.
Many of the claimed pred side effects will occur with PMR that is not managed with pred. It isn't as simple as pred bad, no pred good in that sense.
Hi Pat & DL,
Like everyone, Pred. is somewhere we reluctantly go, but after much consideration of the superb advice I received from the contributors of this forum and my doctors of course, I started taking 15mg of Pred. 9 days ago. I am a different person and this drug is a miracle. So far my side effects have been minimal , fingers crossed! All the best to both of you, Regards John
Thank you, John, I am still undecided but perhaps when I see GP on Tuesday and maybe get some help managing side effects, I will start taking 15mg as I feel I need them as I am in pain. Regards, Pat
Hi John,
Good to hear you're doing so well. Long may it continue!
Hope weather improved- just spoken to daughter on SI.
I hope she didn't get washed off the South Is with all the rain we have had from the tail of Cyclone Debbie! John
Hi
No she didn't, but I think she was a bit fed up with all the rain. She works in local high school organising trips for foreign students, and they've just had a group from Thailand over for 3 weeks! Day they flew home, lovely sunny day with frost - typical!
Ain't it the truth!
Hi I am new to this forum and find it very interesting, I was diagnosed with one 18 months ago and I am on press, does anyone else get horrible sweating ? Thank you.
Loads of us do - it can be part of PMR or it can be a side effect of pred. Or, obviously, both causing a double whammy.
You can edit posts - click on the box with the downward pointing arrow.
And if you want more responses - post this as a new thread, then everyone will see it. When you post in the middle of thread only the people actively following it will see it when it is further down.
Sorry, I mean diagnosed with PMR and taking prednisalone the sweating is awful. Thanks.
Thank you
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