Hi, one and all.
Just reduced from 8 mg prednisone which I have been on for a month and now day two of 7.5 mg and the pains are back in top of my inside leg with a vengeance. Do I need to go back up to 8mg or even 9mg? Advice would be very much appreciated. Thank you.
So early it could be steroid withdrawal, so I wouldn't get into a panic...give it another couple of days. If it is SW it will wear off, it's it too low a dose (flare) it will increase over the next few days...if that happens you need to go back to previous dose initially - hopefully that will work, if not you may need more.
See this for info... healthunlocked.com/pmrgcauk...
.. and once you're back on track maybe consider a slow tapering plan - couple here
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Thank you for the information DorsetLady. Still have the pains albeit somewhat bearable with prescription painkillers. Looks like I will go back up to 8mg from tomorrow and see if I can get back to the virtually pain free state I enjoyed before dropping down. Amazing what a difference reducing just .5mg makes! Thanks again for the trouble you took to help me. Much appreciated. Enjoy the rest of the weekend.
Steroid withdrawal usually starts a day or so after a reduction. PMR reaction normally takes a week or more. Paracetamol can help a bit.
Morning Dartmoor4. I think as others have said, probably give it another couple of days and then go back up if things don't improve. For me four weeks was/is too short a time at each dose, particularly as you get lower, and I would think about increasing that time. I work on a five week cycle but do increase that if needed.
Sounds sensible and thank you for replying. I don’t have a problem going back up as comfort is my aim. Funny though, that when I was diagnosed last October , the rheumatologist said to me that I would be off the steroids in 14 months and free from polymyalgia! I can’t see that happening 😂.
I have learnt from this forum that it IS a long and unpredictable journey and patience is key. Also the support from this group is important too, so thank you for taking the time to reply. Much appreciated.
This just happened to me where I was down to 6 mg.( after tapering for 2 years) and I started to get all kinds of body pains. My rheumatologist upped me to 10 mg. which helps. Then a couple of days later I developed an awful stabbing headache and he upped me to 20 mg🥲. I definitely feel better but realize that, most likely, my life will be a roller coaster.
I’m down to 10mgs at my worst I was on 50mg Steroids for 3 days which made me so combobulated I went to 25mgs which for me was still too strong but as I was in such a terrible state I didn’t care except it affected my sleeping which I hate! I moved fairly quickly to 20mgs, for 5 days then 15mgs for another week now 10mgs, I’m extremely sensitive to everything so I’m better on a lower dose, I can still feel this PMR in my shoulders not as bad, but my hands and wrists and arms are still a bit painful but manageable, compared to where I have been which was completely incapacitated unable to get out of bed without help, watching this take my whole life away I tell you I love this steroid it gave me my life back! So I say just wait like the others have said and slowly slowly and take Panadol if needed! Best of luck xxx
I am so sorry you have suffered so much! I totally agree. Quality of life is the most important. If I don’t feel as I was before by Monday-back on 8 mg for a few more weeks. Thank you for your reply. I so appreciate it. It is so kind of you to take the time. Have a good weekend!
Hi Dartmoor 4,
Sorry to hear of your pains. I'm replying from my own experience with Pred. I’d say you are tapering to soon and look to go back to 8mg and stay on that dose for another month and start the tapering down after that to see if that makes any difference. Speak to your rheumatologist for any other things that may help. I was in pred for nearly fours years and it took months before I could actually come of it completely. It’s a fantastic drug but it messed my body up. Good luck and god bless 💚
thank you dear Liveinhope,
My rheumatologist wants me off asap! But I am not playing ball. If by Monday I am still in pain I am upping the dose to 8mg! I have a life to lead like all you good people. Thank you for sharing. It truly does help. Enjoy the weekend , and thank you again.
If you still need that sort of dose, it is very unlikely your PMR has gone into remission - and THAT is what governs whether you need to be on pred or not. Not what a doctor wants.
You are right and I have decided to increase the dose tomorrow. I will be reticent to reduce after this experience; I thought as I was virtually pain free I could reduce. I am disappointed but not surprised as all you good people have had similar experiences. More patience needed!
You must try o but in small steps, with care, and be ready to realise when it is failing
I know you are right, it’s been said over and over but it’s good to get it reinforced. It’s funny how I believed the rheumatologist at the hospital but that is before I found this site and realised what a bumpy journey this is! Thanks for your advise, much appreciated.
advise pkease?
Been on 8.5 for 3weeks.. intending to go to 8 for another 3 weeks.. etc . suddenly last night acute throbbing pain in left shoulder.. not responding to painkiller .. but better after hot and cold compresses? Is this a pmr symptom? Doesn’t feel like original symptoms? Could I just up to 9 for a couple of days abd see if it affects the pain? If it doesn’t, then it’s something else? Perhaps the neuropathy????? Blimey what a life!
You'd be better asking in a new thread - already, only people actively following this thread are likely to see it,
If it is one-sided it is less likely to be PMR itself. Nor is it typical of neuropathy. Have you wrenched the shoulder? Carried something heavy in that hand maybe?
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