From August / November I was reducing my Prednisilone by 1mg every two weeks with seemingly no problems, getting down to 13mgs, in January I started on 12mgs and intended to slow down for a month. the next day I had what I assumed to be withdrawal pains but ignored them and waited for my body to adjust to the new dose. As the month crept on I was getting more pains in my shoulders and arms to the point where I could not drive and housework was becoming difficult and still the penny did not drop that it could be a flare as I have been sidetracked by all the paper work for my upcoming divorce settlement. Yesterday I suddenly reached breaking point conceded defeat and took an extra 5mgs of prednisolone, today my arms are hurting even doing the lightest jobs even taking the dogs for a walk, they are very well behaved and do not pull. I thought I was reducing sensibly. my arms have never really been pain free especially driving so I was only driving very short distances 4/10mins to local shops. I now have my shopping delivered online which is a big help. Where do I go from here, I feel so down .I guess there is no cure for stupid.
Withdrawal symptoms / Flare.: From August... - PMRGCAuk
Withdrawal symptoms / Flare.
Not stupid at all and i would guess a lot of people have done the same thing. You can go up on your pred for a week to 10 days and still come down to your original dose but it would probably be better to ho back to 13mg where you felt ok. After that stay there for a couple of weeks before beginning your taper again but maybe only doing 0.5mh drops this time. Let us know how you get on.YBB
Many thanks for your reply, would it help if I was very cautious and went down from the 17mgs I am now on to 15mgs and then dropped 0.5mgs per month or am I just being overly cautious., why are my arms more painful today, is this normal, I am one of the lucky one's on this forum where it has been mainly my arms and shoulders that have been affected. Also do many other people with PMR have trouble driving and if so how have they coped, at 75yrs I am seriously considering giving up driving and using taxis. My daughter does not think I am safe to drive because of my limited movement. My heart goes out to the people on this forum who are so much worse off than me, many a lot older who also live by themselves. I do not know how they cope.x
I only reduced half mg every 4 weeks from 16mg (started at 30mg). Very sensitive but this worked well. Much harder now at 5.5mg.
You seem to have been blessed with common sense, some of us were not even in the building when they gave that one out.
Try a quarter mg every 10 days. Seems to work for me since 10 and now down to 8 1/2.
Hi, shouldn’t worry about a cure for stupidity- we’ve all been there🤦🏻♀️!
I would stay at 15mg for at least a week, maybe longer if necessary, then drop down to 13mg, but from then on only reduce monthly rather than 2 weekly.
You’ve had a lot of stress going on, so no wonder you flared, but just take it as easy as you can, and reduce more slowly - that gives you a better chance of not flaring, and indulge in a bit self TLC!
Online shopping is godsend at times.
Take care.
many thanks for your reply, I did stay on 12mgs for the full month of January, intending to drop to 11mgs 1st Feb and then 1mg monthly to 10mgs then stay at that for a few months before dropping again, but as you all say better to go slow and avoid any flares, I thought I was being sensible, I don't know how I got it wrong. I am lucky enough to be able to walk my dogs 1hr morning and 30mins most days weather permitting though I have to admit there have been a few afternoons when I have been too exhausted for the pm walk, also the crashing fall on the ice a few weeks ago knocked the stuffing out of me, you do not bounce back the same when you are 75yrs .
It happens, and with the best will in the world..life intervenes and throws all your good intentions out the window! Your divorce proceedings for example - if weren’t suffering from PMR it wouldn’t have been an issue.
A lot of doctors give us a tapering regimes and don’t take into account that, in current language, “s##t happens”
Good morning DL, I am very lucky I have a brilliant young lady GP who is up on PMR and is leaving the management at my pace. I have had a hard look at myself over the last few hours and have to admit that I have been overdoing things , carrying on as normal house work, shopping, walking the dogs etc, as well as the other personal s—t. I now realise things have to change what can’t be done will have to wait, if the dogs only get one walk a day so be it, they have a big garden to go in. I will not let my big lurcher put me on a guilt trip, mummy is toughening up. Watch this space.lol.
Dogs are very good at making you feel guilty, but you need to be top dog for a while - and take care of YOU!
They adapt to new routines quite quickly. By now mine knows by the way I walk down stairs whether it's a walking day. I aim for every other day and she seems to know that. Garden and the occasional escape as I open the front door. She takes herself with me limping along behind to a patch of grass up the street that we did as a puppy. Good memory...12 now. The guilt is usually internal to the owner!
Thank you for taking the time to reply.x luckily my two do not Go through the gate unless they are given permission, could you imagine me trying to keep up with a whippet and a lurcher, no chance. I have taken on board all the advice I have been given so thank you all. Without all you wonderful supportive people we would all be in a total mess. I hope you all realise how much you are appreciated.x
I fostered an ex racing greyhound once. I couldn't let her off the lead in the woods and got dragged after squirrels... but in the house and garden she stuck to me like glue. I was sad I wasn't in a position to keep her. She was lovely.
Thank you for for opening your heart and home to an ex racing greyhound they are so desperately in need I support Erin Hounds who we adopted our lurcher from, and she has been amazing.
I would say stay on the higher dose for a few more days then down to 15 mg after with the possibility that you could do the rapid reduction ( as you haven't increased for more than ten days/ fortnight) to 14 mg . You could stay on this for the month before tapering starts again , or try reducing to 13 mg ( your last comfortable lowest dose) see if that is still controlling the Pain then stay on that dose for a month while you build your strength and nutrition again before starting to taper again.
You might want to reduce by 0.5 mg as a first taper after this as others have suggested.
Reduce your stress activities.
Stress Activities are things you do that may be too much for your body / brain to cope with while having a Pain Flare or while suffering with PMR , it's Not just Negative things but Positive or Enjoyable activities too. You need to do this , and have more rest and TLC , until you feel your Pain has been under control for several days , not jump back on the horse when you Pain is controlled for a day.
During this time contact the GP or Rheumy to let them know that you have had this Flare. Let them know you have increased your dose , what dose you increased to , and what you are planning to do . Ask for their approval and extra advice for tapering in the future and request an appointment to have things checked . It is better for them to get these incidents on record and give their input even if they can be reluctant sometimes to agree with your choices initially , if they know you are working together as a team early on , they work better with you.
Eat light nutritious foods , increase your Vitamin C and fluids , and try gentle rotation and stretching through the day while you can't be too active to help reduce the Pain and Inflammation , and improve how you feel generally. Build in more Mental or Physical activities slowly after your Pain is controlled.
Good luck and rest well xx
Agree with above stay where you are until symptoms ease. Then reduce 1mg a month, but drop only if no symptoms. I ended up back at 15mg after 9months due to following Dr instructions.
Not stupid - just a bit enthusiastic! You have to stay at the new dose long enough to be sure it is still enough. 1mg every 2 weeks is quite fast although you might manage a 2mg drops every 4 weeks better - the 4 weeks is the important bit, But I think 1mg every 4 weeks will be more than enough in future.
Just wondering if you've got frozen shoulders on top of PMR as the symptoms can be very similar. I had frozen shoulders which morphed into the PMR and found it impossible to drive. It was the arm pain that led to the original diagnosis, confirmed by ultrasound. Does a higher dose of Pred get rid of the pain?
You are NOT stupid. Just as anxious as the rest of us to come off pred. I'm the same age as you, have 2 dogs to walk and live alone. But, in the great scheme of things, I have finally realised that if the pred makes my life liveable (and very often enjoyable) then to hell with it!! Give yourself a few more days on the increased dose, pain relief can't be expected to miraculously work over night, and then start lowering again. Very, very slowly - it's not a race. Shopping online is a bonus and sometimes I forget what I've ordered and the odd extra packet of chocolate biscuits is definitely a bonus. As for the driving, wait until you're sorted out with arm pain and then start again. Do you have an automatic car? They are brilliant and I would strongly recommend them. You will be OK - just be patient. We 75 year olds must stick together!!
Love the chocolate biscuits bit, in my absent minded phase I may just buy some from our local little shop and blame it on the Pred head. I suppose when we get to our age we can be naughty occasionally, but let’s keep this to ourselves.
I know how you feel when you cannot take dogs out as usual. I try to take Lily to an area by the river where she can run free while I walk. However, sometimes lately it has only been once a week, because of weather and a couple of health setbacks. I have tapered to 4mg and hope, in a month , to go to 3,5mg The taper depends on how I feel. I have a very understanding GP who leaves the decision to me as he realizes I'm the best arbiter on that issue. Through the good people on this site, I have learnt patience and to simply take one day at time.
Never think of yourself as stupid, I do the same thing and forget that the pains and stiffness I feel is related to the PMR and until it really bites I keep working through it instead of doing the sensible thing and upping the dose. I think we are supposed to stay at a level of prednisone that controls the PMR, and only reduce IF we are symptom free. However it is easy to forget that the pain and stiffness is not normal, especially for those of us who have lived with it for a very long time. We need to remember that normal for most people does not involve pain, and we need to be there too. Good luck with again getting it under control.
Did I understand you had a fall on ice before the pain in arms got worse. You may need to check there isn't something other than the PMR causing the pain. Take care and best wishes for recovery.
Yes I had a bad fall whilst out with the dogs on the Woodland walk, landed very heavily on right hip , elbow and shoulder which badly shook me up. I knew I had not broken anything but it was a good two weeks before the bruising and pain went. Luckily nobody saw me fall so my dignity was intact, the dogs just stood with their legs crossed.
Um - how did you KNOW you hadn't broken something?
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