A reply by Dan38665 on another post prompted me to ask this question
When tapering/ reducing your current dose of Prednisone, if you experience pain and stiffness, is it in the same areas as pre diagnosis? Is the pain symmetrical? What new areas of inflammation have you experienced as you reduce that are controlled by an increase in Prednisone?
For me, bursitis like pain in my right shoulder and left knee are new. Pre diagnosis, I had symmetrical pain in both shoulders radiating down my upper arms but, it did not feel like bursitis.
As for my left knee, this old injury ( that I believe triggered my journey with PMR) had a different pain upon reduction then prior to. It was visibly inflamed and stiff and painful
Both of these issues took about a month to subside. But were absolutely relieved after an increase in Pred.
My biggest complaint now that I'm steady on 11mg (since starting on 20mg In Feb)
is back of leg pain. It's more of a muscle ache really. Both legs from buttocks to thighs. Every morning and every evening.
For now, the rest of my pre diagnosis areas or shoulders, neck, groin, hips are all in check.
That's it, Danielle, that is where the problem stays when we reduce. The flare ups happen then to do the tapering OMG here is where exactly the problem stays until we have the wisdom do do it right!
Mine is pretty much the same - I am in pain and I'm soooo stiff in my hips, back and shoulders.
But now I get random pain/lumps in my muscles too - my Rheumy thinks this could be fibromyalgia and/or myofacial pain syndrome on top of the PMR, just for good measure. Lucky me.
I couldn't even put my socks on this morning and it's only 5* outside brrrr
yes, at first PMR was very aching neck after sleep, inside groin, hip flexors (front of thigh), I couldn't lift legs to get in car or put on clothing without pain for such a long time. Now that is gone. I couldn't bend over or lean over with my legs straight, or even squat (top of hamstrings, which I now think is bursa), that is much better, but sitting in my car over 30 minutes is very uncomfortable. So that acts like the butt bursa. So I don't travel much.
Mine still symmetrical, but right shoulder used to be worse, but now the left hurts more after Pred wears off.
Mornings were much better, but lately the pain lifting covers off in morning has been coming back as well as my tight hamstrings.
The elephant hump was actually painful to me, that subsided as hump went away, though sometimes the upper back is tender to touch.
In the evenings, my front hip flexors (near the crease of our upper thigh) gets so tender to the touch, when I palpate it with my fingers it helps, guess I'm getting blood flow in there. This is where standing up and walking around every 30 minutes is helpful.
I've wondered about other's experience regarding this aa well. Glad you are asking.
Hi Danielle ,as I reduce my PRD I have terrible bouts of siatica ,legs ache ,and all of a sudden my arms really ache ,
when I get up in a morning ,like other have said it hurts me to move the quilt off me to get out of bed ,then I have the penguin walk as I go to the bathroom and that lasts for about 1 hour ,as the morning goes I I do get better ,I have notice I am pretty much pain free all afternoon till after tea,when i finally sit down to relax the dreaded pains start to come back .......THE JOYS OF PMR .sending every one lots of pain free wishes xxx❤️
I rarely have returning pain due to a reduction - because I do it so slowly using the "Dead slow and nearly stop" approach. If I have returning pain it is usually because of a flare due to increasing disease activity (that's happened 3 times over the last 7 years, i don't count the ones before, I wasn't on pred).
However I DO get pain that is very similar to PMR symptoms that is most likely due to either myofascial pain syndrome or bursitis, usually trochanteric. In both cases I deal with them as a separate entity with Bowen therapy or massage sometimes or I ask the doctor for a local steroid shot for the bursitis.
They will also respond to an increase in oral pred - they are both inflammation - but you reduce the overall extra dose of pred by attacking them locally. Longterm, Pilates-type exercises to strengthen core muscles probably also helps a lot.
A lady on another forum who has had PMR twice and gone into remission twice as well has always said she thinkgs PMR picks our weak spots to make itself felt. The corollary to that of course it - does PMR create the weak spots? Who knows...
Have you considered myofascial pain syndrome or piriformis syndrome for the cause of the back of leg pain?
I believe my leg pain, which goes from buttocks to calves, is from doing too much. I'm on my feet most of the day as my job requires it. However, the pain is in the mornings and as I sit to rest in the evenings. Lessens throughout the day. It had disappeared with initial dosing.
Periods of inactivity bring it on as well. It's the same weakness, pain as in the beginning. Getting up from sitting or out of my car is challenging. Stairs are the worst!
Eileen, after googling both conditions, they don't seem to fit but, of course I'll mention them at my next Appt. thx
I need to find balance and I am grateful that it's not dibilitating just nagging. For now, I'll just live with it.
I get the butt down to backs of knees pain when I'm in the car for half hour or more. Unfortunately, my Rheumy and Bowens practitioner are both an hours drive there and an hour home again. On the way home I tend to stop half way at the beach for a walk. Helps but I'm rubbish for the rest of the day.
Yep Tastyron, me too. My Bowen is also 2 hours away and she said stop half way and walk, that does help a lot. Also I've put a cushion (smaller lumbar pillow) under my right buttocks to lift the other side so as to not put pressure on that cheek. It's helps...till the right one starts to complain.
I note increased morning stiffness is usually a result of stress rather than extra exercise, but a few times I've overdone it - like when the garden became workable and I was using different muscles. The further I get into this journey the more I understand that for me at any rate psychological and emotional stress are the major factors.
Funny, I can't figure out sometimes which came first...pain makes me feel stressed, or was I stressed which caused more pain or atleast more over all ugly feelings (for lack of better word).
Sometimes I wonder if stressing over what foods to eat that I can enjoy that are "listed" as bad for inflammation...but I'll eat them anyway hoping for some enjoyment, then wonder if it will cause a flare. Geez.
I feel now more than before my thinking or state of mind is really felt, though I don't really notice until I say to my self, "relaxxxxx, let go...." Then I feel different, and the tension goes away.
Are many or any of you more sensitive today psychologically? I know the Pred really does that to us, I'm down to 4 mg but still... Or...its just my personality which I'm desperately trying to change.
One evening I was going to post on either this or the other forum about the stressful events in the previous few years that I'd experienced. By the time I got to sixteen, which didn't even count what had happened that day (wasps in the attic preventing a roof repair and the resulting costs for an exterminator, etc) I thought, enough is enough, deleted the list and have tried not to think about any of the things any more. Doubt if I could even remember many of them now. Sometimes I turn off the radio, I refuse to watch tv news, stop my husband if he starts to go on about something we can't do anything about ("developers" tearing down yet another historic building in our city to make way for "progress" for example) and generally try to stay in stress avoidance mode. If I haven't been able to solve the problems of the world by now, it isn't going to happen and all I can really do is try to solve the riddle of my own existence....
In two weeks after being put on pred (15mg) all the pain and stiffness was gone. I went to 12.5 and then 10mg with no problems or pain. Over that period, I was steadily increasing exercise ( mountain biking, swimming and walking) and for the most part got back to decent shape for my age.
When I tapered to 9mg, for the first time some of the nagging pain in both shoulders came back. Also, during the first 2 weeks of taper, I felt increased anxiety and short temper ( more then usual ). I was using modified slow method. 3-1 2-1 etc. By the end of the transition, most, but not all PMR symptoms were gone.
Reduction to 8mg was even harder. This time besides shoulders, my quads and hamstrings were tight. I was still exercising as usual, but was careful not to put too much stress ( going very slow, doing stretching, etc). I would focus on muscle that were hurting and tried to recover them.
When I reduced from 8 to 7.5mg, besides usual suspects ( shoulders and quads/hamstrings), my wrist and thumb were hurting, and stiff every morning. It required special attention.
I am currently in the middle of 7.5-->7mg taper and have exactly the same symptoms.
Stress=pain. Pain=stress. I'm guessing it's a bit of both.
I think the uncertainty of this condition can be very stressful. Each day brings new challenges that we must cope with physically, mentally, spiritually and emotionally.
Couple all that with the everyday stresses of life and everyone else's needs. It can be overwhelming for sure. I'm so guilty of stressing over everything. I'm so angry at times! Especially since it seems this disease is controlling us and not the other way around. No matter how well we try to manage it with rest, diet, exercise and proper Pred dosage, it still betrays us. How dare it?!
All we can do is try to put our best foot forward. We can try to focus on the joys in life. Be grateful. Take it day by day. After all, like everything else that causes us to stress, this too shall pass.
Nick, I know we are all different BUT - It might help to stop at your current dose for a few weeks to let things settle down? I tried pushing my reduction down and found different aches and pains appearing so slowed down even more. I started at 30 mg nearly two years ago and am currently sat at 2.5 mg, and have been for a couple of months, as I 'felt' I had been reducing, even using the DSNS method, a little too quickly. Read what you body is saying?I would rather be at this low dose for a longer period than relentlessly trying to get to zero and then have a flare and have to start all over again - it a bit like the Tortoise and the Hare?
I agree with John - that you are having increasing problems as reducing does suggest you are nearing your "lowest effective dose" for the moment. It doesn't mean you won't get lower, just not yet. They may be steroid withdrawal, if they are going eventually almost certainly so, but slowing down a bit might actually speed up achieving the end game.
Thank you for concern and suggestions. I was too focused on describing symptoms that I did not mention that after first 2 weeks of transition those symptoms are pretty much gone. I usually wait antoher 10 days after symptoms are gone, before trying next reduction. I am aware that the " lowest" dose for my current condition is very close and I am very careful with reduction and will back out as soon as it does not feel under control. For this reduction I have gone from 3-1, 2-1 DSNS to 4-1, 3-1, etc and in essence almost doubled the transition time from 16 to 26 days.
I'd assumed that when I first read your post so didn't reply immediately. I started the DSNS schedule at 1 day new, 6 days old BECAUSE of that problem - it took me even longer to reduce, though in fairness I can only reduce 1mg at a time as I cannot cut my tablets.