Normal inflammatory markers but continuous arm pains !
Posted , 13 users are following.
Hello all. Curious to understand why my arm pains(and sometimes back of thighs too) very often stay with me all day and have done so since reducing from 10mgs in January. I occ' get tender wrist joints and stiff hands. also 'tingling muscle sensation' on calves. CRP/ESR have remained in normal levels, not rising all year. Consultant says lower limb pain/sensation not PMR but I have a memory of Eileen saying that others have had the same? I have ignored the 'pains'.. approx level 3/10 throughout .. and carried on reducing slowly, now at 5/4mgs. Did have high CRP/ESR & 40mgs at Diagnosis.
Because of arthritic knees & weak quads, my poor biceps get quite a daily workout too.
Would love to know if others have similar tale to tell? My suspicion is that it is the PMR and think mod discomfort is certainly preferable to increasing my Pred ?
1 like, 16 replies
Bethune Guest
Posted
Pmr symptoms often resurface as prednisone is dropped regardless of whether or not your blood tests are "bad" showing inflammation. Raising your pred to most recent level of comfort and then Slowing your taper is one way to deal with it
Guest Bethune
Posted
So grateful to the people who take the trouble to post. I have learnt more from this forum than anywhere else
Michdonn Guest
Posted
Clare1001, I will not reduce if I have any PMR pain. Any sign of a flare I increase my Pred dosage and tell my Rheumy after the fact. I very active and PMR pain free. Think positive and try to smile. Smiling 🙂
Rimmy Guest
Posted
Hi Clare
The 'dilemma' many people feel when deciding whether a certain level of pain is 'preferable' to increasing their Pred doses - is an almost constant theme on this and similar forums. In the end only the individual can decide what they are prepared to tolerate (that is of course if the pain IS about PMR). Given that there has been recent research suggesting the side effects (at PMR level anyway) of taking Pred may not in the end be as bad as has previously been suggested I wonder why so many people are prepared to suffer rather than be more comfortable. As has often also been said - this is not a 'race to the bottom' - the zero dose - but you are trying to find the lowest dose which will keep your inflammation levels down (the ones you FEEL -which are not necessarily always the 'markers' you have) until you eventually recover. The fact that it takes people at least 2 years and most often 3-6 years (or more) means we may all be taking medication for much longer than we would like. But coming to terms with that and managing any side effects (if you have them) is just part of the deal. In the meantime I'd personally always veer towards 'quality' of life - pain is not fun - even at a low level it can erode your sense of well-being, change your mood and generally make things unpleasant. So slow tapering seems the best 'route' to me - returning to a dose which 'works' when necessary.
All the best
Guest Rimmy
Posted
Anhaga Rimmy
Posted
While I agree that the lowest level of pain is preferable in some ways there are some of us who get side effects which are worrying in both short and long term. I had a major spike in blood sugar very close to diabetic, increased ocular pressure (a level I've since learned many doctors would treat but mine just brought me in for more frequent monitoring) and possibly a contribution to bone thinning. I'd call a small level of PMR niggles preferable to allowing any of those side effects to continue longer than necessary. Definitely a balancing act.
EileenH Anhaga
Posted
Yes - but your risk is that you are slightly too low to clear out the PMR inflammation on a daily basis. If that mounts up you will very likely eventually reach the point at which it spills over into a flare. So some pain is acceptable - as long as it doesn't increase. After all, there are lots of niggles that are something else! Myofascial pain syndrome is one thing - and that too can mount up until you fall apart (or in my case crumple together in a heap
. Whatever it is - you have to be aware or you might trip over a nasty kerb!
Anhaga EileenH
Posted
That's good advice for others. As you know I've been painstakingly slow to reduce, and I was always careful that these niggles never got worse, in fact I felt so well about six months ago I wondered if I was actually heading into true remission. Hah! After I went back up to 4 it took several weeks but finally I felt well enough, painfree and all, to attempt a slow taper to 3.5 because I knew I couldn't by this point go straight back to my old dose, or just above it. So just two doses of 3.5 over ten days and i know I can't do it. Conclusion, disease more active and I'm going to have to bite the bullet and sit tight at 4 as long as it takes and try to be happy to still be so low.
Think I may try the light therapy again. It certainly seems like an opportunity to really test it!
christophe38948 Guest
Posted
I am concern about all described cases. In my opinion at the beginning the amount of Pred should kill the pain. I do not understand that number of people started with smaller amount and later added but at what point? When pain was killed or pain significantly decreased.
In my case after trial for 4-5 days pain was killed completely and after 6 weeks I started to dercease by 1mg/day per months. Today I am on 3mg/day, no pain return and seems to be good.
Good Luck
CW
nick67069 Guest
Posted
I will repeat what Eileen said so many times. When you were initially diagnosed with PMR, they gave you 15-25mg of pred and the symptoms were gone after several hours or several days. REMEMBER that feeling. That will be your reference point. Maybe you were completely pain free, maybe it was 70-80% free and some pain still stayed with you. Throughout of the reduction process, you are looking for lowest dose that gives you equivalent level of PMR symptoms that you had after the first few days or week.
Don't be afraid to go back up in a dose to regain decent lifestyle. After all, if you are taking pred for several years, how much difference does it make if you increase few mg? But it may make a big difference in how you feel and what you can do.
sharon35553 Guest
Posted
Good luck to you!
Sharon
sharon35553
Posted
My tests also were negatives even though I have PMR but I also tested positive for RA. Pain so bad and Rhuemy tapered me off the pred very slowly and I have been off now for three weeks.
In agony, cant bend, get up and down and arms and hands so stiff.
Shoulders actually started to burn and ache at same time so he had better do something. Not sure I want to restart the pred, trying to eat healthy and remain active but so so har dto do while hurting like this.
I am only 65 and feel like a cripple.I can only hope my Dr knows what hes doing but I may need to start again and go through all of the tapering again but if it helps it will worth it.
Good luck to you too!
Guest sharon35553
Posted
Hi Sharon, that sounds tough...hope your specialist comes up with a good plan.. you'll sure to get sound advice from Eileen too. goodluck
Bethune sharon35553
Posted
So sorry you are suffering like this. I have PMR and RA... though both atypical.... my blood markers are almost always OK. I am dependent on prednisone as we've tried 5-6 other drugs and all failed or had worse side effects. I have bounced from
30-5 pred. but always get a flare at some point. I have osteoporosis and prediabetes, but I am thin and very active/sporty and do weight lifting for my bones and general strength. I feel these are side effects from the prednisone. I am 68, and do not intend to live my present and near future in chronic pain. I've accepted the trade offs for now.
I'd up the pred if I were you, but it's a totally individual decision how to balance the different devils. Wishing you less pain and some peace and fun.
sharon35553 Bethune
Posted
Hi Bethune,
I too have severe Osteoporosis, they want me to go on Prolia but when I read the reviews from others it scared me to death so I declined even though my insurance covered it.
My cholesterol also went up from the higher doses of pred, its now back down to 180 because I went on a cholesterol free diet about 8 months ago and now that Im off Im afraid it will go again and I dont ever want to go on meds for that if I dont have to.
I am also active when able and I used to walk for miles but now its just pure agony.
I will not live with this pain either, I was totally pain free at the 15 mil of pred within hours when first diagnosed now Im hoping that I can start at 10 and work my way down slowly again.
its a roller coaster and I hate it but the pain is even worse.
Good luck & thanks for your reply!
Sharon