I gained weight and subsequently became depressed ( this was scary stuff), had a stomach ache which was awful but was relieved by eating (more weight gain), but the worst thing was the insomnia. On top of the prednisone I was taking medication for ulcer type pain, an antidepressant and sleeping pills on nights when I had to work the next day. I finally quit prednisone and the soreness and stiffness from the PMR became more tolerable than the side effects from the prednisone. By quitting the prednisone, I also quit three other medications. When my doctor weaned me off the sleeping pills, I felt like I was freaking out, but now I take a bit of Melatonin and take a long walk before bed. Has anyone else quit the prednisone and is dealing with their PMR symptoms without taking prednisone. I have had PMR for four years and I am now accepting the pain and stiffness everyday and I am searching for alternative ways to help relieve the pain and stiffness. I have a different family physician now who is getting me to experiment with food and also exercise to help reduce the inflammation that is causing the PMR. Is anyone else going it alone. (By that I mean without synthetic drugs prednisone - I also tried methotrexate injections ( caused sore stomach and nausea for me) and what are you doing??
Best of health!
Libby
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Zafra
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I had 5 years of PMR without pred - not out of choice but because I wasn't diagnosed. I can still remember the relief 6 hours after taking the first 15mg - and it would be a very serious difficulty with pred that persuaded me to go back to the constant pain and considerable disability I had in those 5 years. Not to mention that now I know - I didn't then - that unmanaged PMR is felt to be 7x more likely to progress to GCA. Then you have a choice of very high dose pred or risk losing your sight permanently.
Don't misunderstand me either that I have never had adverse effects due to pred, I was switched to methyl prednisolone for several months and that resulted in considerable weight gain, steroid myopathy, my skin and hair went mad as well as some other effects, I was in hospital just a few months after starting it and the top of the diagnosis list was "Cushingoid". I switched to prednisone and now my doctors say that no-one would know I was on 10-15mg corticosteroids. But I never felt it was worse than unmanaged PMR.
Most of the adverse effects of corticosteroids can be managed when you know how - not least the weight gain which does appear to be at the base of your troubles. It is your choice and I wish you all the best. But having been there myself - I can't see myself joining you again in a lifestyle that required hours every day just to be able to move at all but never without pain. Luckily I was able then to have affordable membership of a gym with a warm pool and daily aquafit, 2x weekly Pilates and 1x weekly Iyengha yoga classes which kept me mobile enough to function. I worked freelance - no work, no income - but it meant I chose my hours around those classes which were all in the daytime, aimed at the retired.
I became isolated - I could go nowhere if I couldn't drive and park close to the door, how often have I driven home because I couldn't park close enough. I crawled up stairs - a ramp for disabled access didn't help much, I had to walk further and the trochanteric bursitis made that feel like knives stabbing in my groin. When I had to stop driving for another unrelated potential diagnosis (incorrect as it happened) I was housebound, using public transport was impossible. I couldn't even food shop alone, I was dependent on my husband. And I became depressed and gained weight - immobility, constant pain and isolation does that. Not just pred.
I wish you well, but my sentiments align very closely with PMRpro’s.
I was undiagnosed for 18months, but I had GCA not PMR, and whilst my mobility was not as badly affected as hers, the lack of diagnosis and Pred caused me to lose sight in right eye. The only thing that saved the other one, was large doses of Pred - with not very nice side effects - but no option.
No Pred, no sight!
Not saying it will happen to you, but you must be aware of the possibility if your PMR is not treated properly, and do seriously think of all the pros and cons of Pred.
I too went many months without diagnosis, crawling upstairs to bed, sometimes thinking it would be better to sleep in a chair. Caused depression, it wasn't like me. One day on pred and pain stopped. Gradually tapering and don't like side effects but can't go back to the pain and disability.
Most people feel the benefits outweigh the cons of pred especially when they have gone years without a diagnosis and being fobbed off by our gp's. Yes there are probs with pred but most can be minimised. I just like the fact my life whilst not what it was is definitely liveable. YBB
Quite agree Yellow bluebell, was struggling before now quality of life much better. Yes there are side effects which can't be ignored but life before and after taking pred so different.
Hello, as has been said, side effects can be managed if you have the information (usually not given by docs). What makes me worry about your approach is that by toughing it out without Pred controlling the inflammation you are putting yourself at risk of GCA, aneurysms and stroke in the long run and you may get no warning. starting doses for that will make PMR doses seem attractive and you may then be choosing high doses over losing your sight. If diet was a foolproof method of dealing with inflammation we’d all be cured and some of us were on those diets before diagnosis. Tough going though, I do appreciate.
I cannot imagine anything worse than giving up pred and going back to the dreadful pain I had and effectively being totally housebound. With pred I feel I am now back in the land of the living. You must have a very mild form of PMR if you can manage so well.
As I have stated before I stopped the pred in December 2019 and am working with a Naturopath to find a more natural way of dealing with it. I am stiff through the night and having varying amounts of pain through the day but no longer have side effects from Pred or having to take stomach protectors.
I am sticking with the Natural route to see if I can make a success of it rather than taking pred.
I believe each person is different and only they know what their pain tolerance level is and what they prefer to put into their body.
You haven't said how much pred you were on, and for how long. How long have you been off pred? I wish you well on your journey, but I know I couldn't cope with the pain and stiffness I experienced without pred!
Sorry had not got back to you earlier, I was on Pred for a total of about 16 months. I started on 30mg and tapered down to 1mg and then stopped in December 2019.
I sometimes take Naproxen, a non steroid anti-inflammatory. Today I am feeling the least pain that I have since beeing off Pred.
They are medications such as PPIs (omeprazole for example) or ranitidine/famotidine (H2 antagonists) that reduce stomach acid production and so act as protection when on certain medication that may lead to gastric irritation. They, like all drugs, have their own side effects. Not least for PPIs, they have the potential to lead to low bone density and osteoporosis (not that that gets much mention).
Like others I could never return to the state I was in at diagnosis. I would be living in a wheel chair or some other device because I simply couldn't lie down with the pain, couldn't walk, got on or off a toilet without assistance, or lift so much as a cup of coffee without two hands.
I followed the Clint Paddison diet for the first six months or so that I had the PMR. My appetite was basically gone, my stomach shrank, and now that I'm even more obese than I was when I started, am back on Clint's green smoothies for dinner and oatmeal with equal and vegan butter for breakfast.
My side effects from 18+ months of pred included thin skin and bruising, itching skin, ravenous appetite, not processing carbs virtually at all (stay away from white carbs is good advice for absolutely everyone regardless of disease), thinner hair, blurred vision, spiked blood pressure and, worst of all, prednisone myopathy which made my core and thigh muscles so weak that I was out of breath just climbing stairs. Still have that and may have it for the next year or so I'm told.
I have now been able to get down to 5mg of pred and hope to be completely off the stuff in around 5 months. I have had withdrawal symptoms (easily tired, muscle fatigue or aches, weird sleep patterns) but they are nothing compared to the PMR flares.
Staying away from dairy also seems to help - give me a glass of milk, for some reason, and I'm a wreck. Tiny amounts of food, never after 8 PM, and try to stay plant based. Take B12 and D and Calcium, probiotics too, and you just may feel a lot better.
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