Hi, I had a petscan wich resulted in the diagnose of PMR, I posted my story before pre- diagnose and got great tips of you all.
I started today on prednisone 20 mg. , I’m a bit scared for the side effects but I’m waiting for the miracle to happen, I’ve been in so much pain yesterday and last night that I’m a bit hesitant about what’s gonna happen, but I read all these good things about pred so fingers crossed.
Did any of you experienced any severe side effects?
Just curious!
I have no side effects from pred I think.
I take pred with food which seems to mitigate problems with the gut.
I eat low carb which has stopped weight gain.
I do weight bearing exercise and take Vitamin D and Vitamin K2 which has stopped me getting osteoporosis. I have stopped taking calcium since I had a stent done in October. I now eat more calcium containing foods, and Vit K2 ensures the calcium gets into the bones.
Any other symptom I have are down to the disease itself, or adrenal problems since lower doses.
I am one of the lucky ones since I started on 20mg 5 years 5 months ago...no pain at all. Makes it easy to know if I am on too low a dose.
Fatigue. This is an ongoing problem unless I pace myself. Some of this is due to PMR , some due to adrenals needing to wake up.
Otherwise I am pretty well!
And I hope you will be soon!
Hi Illie. Was just sitting reading the forum posts as I have just 30 mins ago taken my first dose of pred today as well. So thought I’d say hi and good luck to a fellow traveler. I am new at all this so have little to offer except support, sharing stories and experiences and empathy. This forum is fabulous and has got me though. Keep us posted and good luck. 🤞
I hope your journey goes well and that you'll wake up tomorrow feeling the benefit of Pred. Do what you're able to do and no more. Take pleasure in the small things and keep smiling. 🙂
Good luck to you too!
Most people don’t get severe side effects, but like all drugs there will be some less severe ones, however all of them can be managed.....even on a starting dose of 80mg my major issue was lack of sleep, but that only lasted a couple of months.
In your first post I gave you a link to both my introductory post and the FAQs, so have a look through those.....and hopefully the miracle will happen soon.
Yes I did thank you x
Mostly positive things initially, like total pain and stiffness relief in my case it took 2 days. I wasn’t quick enough to go on a low carb diet. The big appetite comes quickly. My sleep was disturbed, initially. I was prescribed 10 mgs of Amitriptyline to take an hour before bedtime and it helped. I had eye checks more often than usual. I paced my activities and cut out heavy jobs. I began an afternoon nap that I treasure a few years on. I followed the advice on here and took comfort from others. I used the taper programmes recommended on here and didn’t allow myself to be bullied into fast tapers or unnecessary drugs. I got a great Rheumatologist at PMRPro’s recommendation. Looking back, it wasn’t a bad time at all. What side effects worry you?I now have GCA/LVV unfortunately.
I read so many things, from tiredness to hallucinations, aggressive mood changes
Tiredness is common and can be mitigated by sleep/naps/ rest. Irritability can also be experienced so familes and friends may need an explanation that the meds are causing it. Aggressiveness in the true sense of the word is most probably far less common.Try not to pre-empt symptoms, Illie. They may never occur but if any do, they may be fleeting. You'll know the reason and should understand that they won't last for ever.
If, by any chance, you do experience anything that worries you, your GP/rheumy should help.
Thank you, I feel I’m tired now, I’m worried about work, I feel a emotional wreck even without being on steroids I think , just cause of the pain , not sleeping of pain, I started yesterday on 20 mg pred and I couldn’t sleep at all, but my pain in my shoulders was relieved and i was so happy , than I see my work rota for after next week and I get anxious.
I had aggressive mood changes with PMR - long before pred! The fatigue is more likely to be the PMR than the pred until you get down to below 7mg.
😂😂, my moodchanges are through the roof at the moment due to pain, the diagnosis, and anxious, not sleeping, that’s why I’m a bit worried for the pred I think, thank you for making me laugh!
But the pred WILL relieve a lot of those aspects and that often balances out the effects due to the illness. The lack of sleep MIGHT be made worse by pred but it doesn't happen for everyone - I'm on 15mg pred and sleep really well now that other factors that disturbed my sleep have been eliminated. Pre-pred it was pain and the hot flushes due to the PMR, now the hot flushes only happen if my pred dose is a bit too low.
I consider it a wonder drug as far as relief from pain is concerned. I was fortunate that slow, steady tapering worked well for me. I knew from the start that it would be a long process and accepted that. If you can take each day as it comes and don't push yourself to accomplish 'everything' because your pain has diminished you will be doing yourself a big favour. I wish all the best as you go forward.
It all depends what you call severe - some people feel gaining a few pounds in weight is dreadful while others just accept being in so much less pain.
Like Mary63 I'd say I have no noticeable problems. I gained weight - but with the PMR as much as the pred and anyway lost it all again by cutting carbs drastically. My hair went a bit mad - again it did that with the PMR and then again with methyl pred which I took for some months. but calmed down again though still a bit frizzy when it gets wet. I have no sign of cataracts (I wish!) and my skin is OK. I do bruise on my lower legs but I am also on anticoagulant therapy. I have almost no change in bone density - and I don't take alendronic acid. And I have never taken any stomach medication, not needed any.
Thank you, I’m a bit anxious I think for what to come or what to expect, I feel I’m in a rollercoaster of emotions at the moment, I saw that my work planned me in to work after next week, they planned me in for 12 hour shift and night shift and I’m getting all anxious, yesterday I was so happy that my pain in my shoulders dissapeared quick but than this morning I reached for something in the fridge and it felt I overstretched to say the least, It’s just my emotions are all over the place.
I think that being on pred is considered a reason to be excused shift working and to be honest - PMR is a reason to be signed off sick longer term, I realise that isn't always possible if you don't get sick leave but PMR is also covered by disability legislation where employers must make reasonable adjustments to allow you to continue working.
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