Hi everyone it’s a while since I posted but read avidly! I am down to 2mgs prednisone and am two years into the journey. I have read the recent debates about prexit and I too am sitting on the side trying to decide if I should jump in!
I do still have stiffness well more like tightness in shoulders and hips but this is it. I find it hard to get out of a seat if sat for any length of time but that is more embarrassing than painful as I sit in lots of meetings.
I find using a tennis ball against a wall on my stiff areas helps to relieve the tension. I plan to start regular massage again next week. I am to all intents and purposes self managing as I haven’t seen my GP but pop in for regular bloods. All of which are normal.
I am trying to work out if I am doing okay and sticking to my tennis ball and reducing pred is okay? I work full time. I still try to walk at weekends when I can.
I think I am getting to the place where I may be able to stop pred with the aid of a tennis ball or am I deluded. I read the awful time that others have and while I hate feeling so old and stiff (I am 53) I still manage to live my life, work full time and go in holiday regularly for which I am thankful
Would welcome any views and advice.
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JulieR2
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From your explanation of how you feel, I would say your PMR is still very much alive - sorry! Therefore no prexit for you at the moment. In fact maybe an increase (only small) may get rid of that tightness etc.
You bloods may well be normal, but that only shows the Pred is working, not that the PMR has gone, in fact at only 2 years in its very unlikely it has.
At the low levels you are on, you are getting nothing in the side effects line, but if you are too low you aren’t getting any of the benefits either!
Personally I would try an extra mg or two for a while and see if those niggles go.
Thanks Dorset Lady. 4 mg today for me! I will try it and let you know how I do. Even after nearly two years I am still trying to live in denial. The advice you give is always sound and a good reality check
Don't just suddenly stop your pred - even if 2mg is fine, 1mg may not be! You wouldn't be the first to think such alow dose can't be doing anything when it was!! Even 1/2mg can be the difference between being fine and not.
I agree with DL - I know you don't want to hear it but I suspect the PMR is still alive even if only bubbling under the surface at a low level. Stop the pred and you may find you need to go back to a much higher dose to get it under control again.
Don't spoil the ship for a ha-pth of tar. And seriously - consider adding at least 1mg and see if it makes you less stiff. Even 3mg is a very low dose after only 2 years.
Hi Julie! I am in nearly the same place on the journey with 1,5 years and at 2mg of prednisone. There is definitely the temptation to reduce but the stiffness that signals that the our uninvited guest has not vacated the premises warns me not to hop off the cliff but rather take the gradual path downhill.
Thank you Dorset Lady and PMR Pro for your faithful care.
Hi JulieR2- I’m almost 2 years on the PMR journey, and am 2.5 mg for 1 day a week, then 3 mg for the other 6 days —slowly getting body adjusted to lower dose.
Weekend walking is a great idea. I wear a pedometer, and shoot for 5,000-8,000 steps a day, which seems to make a big difference for me. Helps me stay more pain free. You said that you work out , which is really great, something I need to do more of, now that my gardening is done for the winter. I work 30-35 hrs / week. I notice that I get less stiff from sitting at meetings, concerts, plays, etc if I’ve walked more that day. Also I try to sit in a back row, where I can more easily vary my position —standing, stretching etc at meeting or event. Maybe your work situation doesn’t allow changing positions. I’m grateful that my supervisor and all my coworkers are aware of/sympathetic to my health situation. Also at work, I volunteer for all the office errands, and fortunately I have a sit-stand desk too. Yesterday (Saturday) I did not work, and at home, only logged 3,000 steps, then later sat at a 2-1/2 hour music concert with friends (so couldn’t do my usual back row “move-around” seating) I was stiff and sore when I stood up at intermission (thank goodness there was one!). Getting in and out of car was difficult too after the concert, so when I arrived home , I paced, danced and moved around the house , and was better by bedtime —less stiff and achy.
Movement is good!!
The tennis ball idea sounds like a good one. PT’s have recommended that but I’ve yet to try it. Best of luck at your newly upped dose, and knowing when/how to taper —always the challenge for sure!
Thanks Joan Jo you are right my work does mean lots of sitting. I think you are right about movement and on the days I get up and about I am so much better. I am going to do 4 msg this week as already I can tell that this has made a difference. I know we are all obsessed with getting off pred as I think we think it’s a sign of cure. Will let you know how I get on. I have had massage throughout too but my poor therapist has been ill since sept. I am so glad she is on the road to recovery for her sake but being selfish I can’t wait to start regular massage again will update on how I do. Julie
Hi JulieR2, I've somewhat jumped in on the advice you've been given. I've been told by my Rheumy to reduce at 1mg per month, I'm just 22 months into this PMR fiasco and I'm down to 1mg per day at present ( having started on 30mg's March 2017) but since I got down to 2.5mgs I've been aching in the usual places, shoulder, neck, hips, hands etc. Having read your brief summary and the comments by PMR Pro and Dorset Lady, I've realised I'm not winning this battle at present, so I've gone back up to 3mg today and already my hands and shoulders feel a lot easier and pain free. I'll try and start reducing after a couple of weeks but very slowly this time. I see my Rheumy in 3 weeks, he'll be disappointed but I'll be pain free, hopefully. Best of luck. Graeme
You are never reducing relentlessly to zero: you are looking for the lowest dose that manages the symptoms as well as the starting dose did. And it doesn't matter how slowly you reduce, trying to sneak under the radar - you won't get past that lowest dose. It may be that the activity of the autoimmune part of PMR is falling steadily and waiting for a month or two before trying again might work. But when you get a return of symptoms 2 or 3 times in a row - it is your body telling you have arrived.
Evening PMRpro, thanks for quick reply. The rheumy wanted me down to zero so he could discharge me ! But I realised when I got below 3mg and started to ache a lot, things weren't right, but I've persevered down to 1mg . Now having read your reply to JulieR2, I've taken heed of what both you and my body was saying and feel better for it but I will try again to reduce but maybe not until after the New year and see what happens then. Many thanks again. Graeme
Hi Graeme I know that feeling of driving down to zero. I didn’t see a rheumatologist despite being relatively young at the onset. The advice from rheumatologist to my GP was to manage in primary care unless there was an issue. The 4 mgs has made a difference and I plan to stay with that dose until my bloods come back and maybe longer. I am now self managing as long as my GP keep giving me the prednisone. If I need to see anyone I can see my pharmacist and have asked my occupational health team to do my bloods regularly. Let me know how things go for you . Julie
Your rheumy really deserves to get PMR themselves. Reducing when you have pain is a total waste of time and will only result in one having to go up again and even start yo-yoing.
As piglette says - if you have pain and force a reduction all that will happen is that you run the risk of ending up back at the start. If there is left-over inflammation each day it will mount up and eventually you will be in the same state as when diagnosed. It is beyond me how they are unable to grasp the concept!!!
Thanks julieR2, Piglette and PMRPro, I’ve taken most of my advice from reading your overall comments to others in the group. So far it hasn’t failed hence being back to 3mg and already feeling better for it. I’ll tell the rheumy that at present I’ll stay on the current dose and go from there. I’ll also keep reading the chats and comments on this site . Many thanks once again. Graeme
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