This is my first post! It’s so good that I have found you All at long last Thank You. Diagnosed with PMR September 2021. Struggling on 7 mgs prednisone. (For the last month) due to take 6mgs . Pain in neck, pelvic girdle and shoulders have persevered with the pain unable to function properly now. Decided to take 10mgs last night ( can’t take it in the morning as it takes up to 12 midday for the pain to ease) and feel less pain. It’s mainly pelvic girdle pain which affects my walking. Should I try 15 mgs at night or take 10mgs. for a couple of nights? Have tried to carry on as normal with so much pain. After reading your advice it has made me come to terms with PMR it’s not going to go away quickly. I will speak to my very kind and understanding GP this week. Thank you for reading my post.
Newbie: This is my first post! It’s so good that I... - PMRGCAuk
Newbie
Hi WarmVelvet. Welcome to this eclectic crew. No one has all the answers but someone better qualified than me will be along soon to offer helpful advice if you need it. Sounds to me that you need slightly more pred. and a better taper programme. you'll get there but it takes much longer than any os us think initially and seems also to depend on an early diagnosis for a smoother reduction after the pred. has reduced the inflammation.
Thank you
Welcome to you, PMR is so confusing until i found this site thought i was going mad, did what i was told by Doctors but never seems to follow the route the doctor said, iam two years in still not to good but i am getting there and so will you, don't try to make any sense of it, just enjoy each day as best you can , x
Thank you for your positive encouragement.
Hi, and welcome
Am going to suggest some links for you to read - one on general info, one on dealing with flares, and one on adrenals - all of which may give you a better idea of how to deal with your illness - and agree with cycli you’ve probably reduced too quickly -
healthunlocked.com/pmrgcauk...
Hi, and welcome.
if you are on the correct dose you should be as free of pain as you were with the starting dose. I would say that getting to 7mg since last September is too fast a reduction and you really need to discuss this with whoever is guiding your tapering. You are not heading relentlessly to zero - you are looking for the lowest effective dose and you are past that if you have so much pain. There is no point taking too low a dose to manage each day's new batch if inflammation - it builds up until you are back where you started.
I have a low back problem that results in tight muscles and hip bursitis that create difficulty walking as you describe. They often respond better to more targeted treatment than oral pred but that then lets you manage on a lower oral dose.
At what dose were you last reasonably pain-free? One approach recommended by doctors (and us) for sorting out a flare in symptoms due to overshooting the dose is to add 5mg to where the flare started for a week and then drop back to the desired dose - the one 1mg above where the flare happened. Then try a very slow taper of 1/2mg at a time if you want to try to get lower. But when symptoms reappear more than once at the same dose it is your body telling you it is not ready to go lower yet.
Have you found the FAQs? Have a good read of them, there will be info there that wil help you. The link in just below your post at the top of this thread.
I made a mistake with my dosage I was on 7mgs. The flare started when I dropped to 6mgs. Next week I would of dropped to 5 mgs. Maybe I will take 12.5 mgs. Does that sound okay? Thank you for helping me.
Try it and see if it works - if it does you can go back to the 7mg once you feel good enough. You will get lower - just not yet.
Thank you for your advice.
Morning Warm Velvet, nothing to add to the information and advice already posted, but just to welcome you to the forum. Don't worry about asking questions, no questions are silly here and at the beginning, we've all been at your position of learning how to manage a disease most of us had never heard of. Someone will always get back to you. Take care, enjoy your reading.
Thank you.
The rule of thumb is don’t reduce if you are in pain. You should be in the same position you were when you first took the steroids. You may have steroid withdrawal for a day or two on reduction but you should not have the pain problems you do have. Going up for a couple of days is probably not enough, you should increase 5mg or so for a week to really to hit the PMR on the head. Then reduce back to where you last felt OK.
Thank you. Have taken 12 mgs prednisone last night and have no pain this morning! 😊
that's good news. Good advice here and wish you luck on the journey.
Really glad to hear that.
I understand now. Was dubious about tapering to 6 mgs should of stayed on 7mgs of prednisone. Thank you.
Morning and welcome. Try tapering by 0.5mg per month...it's been working for me. 1 July sees me taking 5.5mg and hoping I don't get a flare the lower I become. Seems this disease is trial and error. Into my third year on Prednisone.
Good luck
Anne
Thank you Anne.
Welcome, have you considered dividing your dose to achieve a full days relief of pain? You might try taking 1/3rd of the dose at night so that you feel pain free when you start the day, then the rest when you get up in the morning. It works very well for me. It’s clear that 6mg is too low for you and as others have said your tapering plan is far too rapid, possibly/probably because your doctor doesn’t understand the nature of PMR. Same thing happened to me at the start, and I now know that 8mg is my happy place, 3mg at bedtime and 5mg in the morning.
We are all on different journeys with our condition but you are in good company here.
Thank you. Will try what you have suggested. As it is all trial and error. Not by the book!!
Welcome WarmVelvet. This forum has been invaluable to me on my PMR journey and I’m sure will be the same for you. It’s my first task of the day to look at the forum whilst having my breakfast 🤗
Will try and do the same. Thank you.
PMR provides an excellent opportunity to learn patience.
PMR will not be rushed. It is on its own schedule and ridding yourself of it requires respect for its maddeningly plodding pace.
PMR will not be rushed. It is a sloth train, charging ahead with the speed of a galloping snail. You are on that train. Say, "Whoopee!"
PMR will not be rushed. If you overshoot your taper, you will be reminded.
PMR will not be rushed. Hurry it along, push that river, nothing good will come.
PMR will not be rushed. It is of you, in you, part of you, but it does not march to your orders.
PMR will not be rushed. Sit with it like you'd sit with a sick friend. Do not drag your sick friend from bed. Visit. You are your sick friend.
PMR will not be rushed. You ARE special. You ARE unique. Still, your PMR will not be hurried along.
PMR will not be rushed. Tapering is like watching paint dry.
And remember, PMR will not be rushed.
Absolutely right. Enjoyed your prose!
We wondered if you would put this up as a new separate post - because this would be a great summary for everyone to have the chance to see - and maybe print out to stick on the fridge!! Because of the way HU works not many will see it here ...
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