PMR relapse

Hi Eileen,

thank you for your prompt reply.  You are probably right, I think i was on a bit of a 'self denial' .  When i was between 3mg - 1 mg, i was not completely 'pain free', it was just dull ache, but because i managed to do almost most things, i just carried on reducing the dose.  I know my condition well (so I thought!), as i've kept a diary of my dosage and symptoms for the whole 3+ years, so that i could compare my symptoms and the dose I was on.  This recent flare up which i thought could be a 'steroid withdrawal', but it was so similar to the pain I had when i was first diagnosed with PMR.   It started unilaterally on one leg - left, (i am not sure how common that is),  from the foot to the pelvic area, and some 'heaviness' on my shoulder. But the pains felt like "sciatica" pain, as i couldn't stand or walk for long, and the gripping pain comes in waves... I have seen my GP, and he advised me to go up to 10mgs.  I've been on that for 2 weeks now, but the pain gets worse as the day goes by.  I feel like putting up my dose again, but not sure how long for , and how to come down again.   By the way, I was discharged by my rheumatologist, when i was down to 1mg.  But then, this flare up.. !  it made me feel quite deflated and defeated.    Thank you for your advice.

Are you sure it's not a back issue?  Sounds like it could be referred pain from a nerve.  Especially as increasing pred hasn't helped.

 

Anhaga has a point - it could be myofascial pain syndrome leading to nerves being pinched. One sided pain is often not PMR but mPS and PMR can be very similar and mixed up together.

thank you Eileen,  could Myofascial pain be treated the same as PMR with pred ?  Will the ESR and CRP also be raised?  Mine were raised  during this flare up.  And, how do you treat /diagnose Myofascial pain?  My history of PMR started 3 + years ago out of the blue!   I didn't know what it was then.  But my ESR then was 135 and the CRP was 245, they were sky high!!  And it also started on one side on the left leg, then shifted to the right, then the pelvi area, and then went up to the shoulder !!  So this flare up is like history repeating but slightly less severe.  

Thank you everyone for your input, it's nice to share your misery and joy  !    

Thank you Anhaga, i dont suffer from back pain .  I kind of rule out  'sciatica', although that did cross my mind.   I could raise my foot straight, and touched my toes without pain nor difficulty.  It is the sort of PMR pain that squeezes and pinches your calf  (like cramp) and then it goes up to the leg and then across the pelvic area.  i  read so much, that my mind was bombarded with a lot of 'self diagnosis' . But i will be sensible and objective.   thank you.for the suggestion.

Yes, that's why I suggested "referred" pain.  You might not have any back pain, but nerves in the spine can be irritated and in fact the nerves in the spine branch out and extend into the rest of the body.  Also, I had some pain in my hips and that was very much relieved by techniques to relieve spasmed muscles in my back.  Just a thought.

MPS is caused by the same inflammatory substances as PMR - but they are concentrated in small areas that form knots of hard muscle fibres in the large muscle groups or inflame the fascia on the outside of the muscle. For the hard knots a more targeted approach works better - steroid injections locally or manual mobilisation techniques work well. As Anhaga says - the pain may be referred to other areas - but really be due to back problems that lead to spasmed muscles.

Forgot to say - a physiotherapist or sports massage therapist can often work wonders.

Hello Eileen

Ive beenreading somuch on this blog since i joined, and have learnt a great deal from people's experience of PMR.  Can you enlighten me of my situation now of the relapse.  As for my recent relapse as the above text, I have now gone up from 10mgs 2 weeks, to 12.5 mg for 2 weeks.  And i am at the point of tapering again very slowly..  But I still have some symptoms , and not totally 'pain free'.  I tend to have little pain or or No pain in the first part of the day ( itake my pred after breakfast).  But by 6-7 pm, i will experience dull ache, or sometime more moderate pain on my left leg, from foot to buttok, and it always has a ' tingling / numbing ' sensation, and occassionally , the ' tingling' is felt on the left side of my head, but it does not last long. 

My recent CRP 2 weeks ago showed as 6, and ESR was 15, which had come down from when i had the flare.  I am not sure whether to stay on 12.5mg or go up a bit.  I can still do most things, just need to ' slow down ' and rest after a while.  The 'tingling' worries me.  the pain is 'bearable' .  I am going to do the ... " 1 day new dose .. and 6 days old dose... and so on " , that is 10mg and 12.5mg , until i get back down to 10mg again.   sorry for being so ' long winded'.   Will appreciate you advice .   thank you.

Can you still get 1mg tablets of the corticosteroid you are on? That would probably be much better - some people struggle with alternating 2 such different doses.

It is also possible you might benefit from splitting the dose - take perhaps about 2/3 of the total dose in the morning and the rest later to deal with the evening discomfort. The antiinflammatory effect of pred lasts from 12 to 36 hours - if you are nearer the 12 hour end of the scale you will have discomfort before the end of the 24 hours. 

If it were me I think I might try 15mg and see if the result is any better than with the 12.5mg. If after a few days it isn't you should be able to go back to 12.5 mg quickly without tapering.

But the leg pain you describe sounds like sciatic pain - and a common cause of that is tight muscles in your lower back or buttock that are pinching the sciatic nerve. That can be due to the myofascial pain syndrome we mentioned before or to piriformis syndrome. They both tend to improve at higher doses of pred but then reappear as the dose is reduced.  A physiotherapist may be able to help or a doctor who acknowledges such problems might agree to a steroid injection - which may be quicker to gain relief.

Thank you Eileen.  I will monitor my pain threshold and see .  I will consider 15mg if the pain persists.   I ruled out sciatica because i dont suffer from back pain or movement / mobility problem.   But it is strange that my pain always started on the Left leg, and the relapse also started on the Left Leg.  Going back 3 years, when PMR struck me out of the blue, my symptoms started first on the Left leg, then went to the right leg  , and then it crept up to across the shoulder.   Now the pain is just on one Left leg !!  I read that most PMR occur bilaterally, and not usually unlaterally.  But I have read some do just suffer from leg pain unilaterally.  Hence even my GP has doubt over this recent 'relapse' as being caused by PMR.   But i know it is because the symptoms were so similar to how it started . 

Thank you Eileen, for your wonderful and sound knowledge and advice.

The sciatic nerve can be irritated and cause discomfort just from tight lower back muscles which aren't bad enough to cause problems themselves. In particular from the piriformis muscle which is in the buttock and in some people the nerve actually passes through the middle of the muscle. It is just a thought. PMR has a habit to picking your weak spots - and makes them worse over and above the rest of its effect.

Hi Eileen

If it is the sciatic nerve that become irritated, is it the right medication to use  prednisolone? I do respond to pred but pain killer like ibuprofen or paracetamol did not seem to ease the pain much !  And how do i remedy this ? or get it properly diagnosed. ?  I think i seem to be hanging on well on 12.5mg at the moment, it is just the discomfort towards late afternoons and evenings.  I wonder whether physiotherapy will help?

thank you for your advice. 

 

Physiotherapy in the form of identifying and combatting tight and spasmed muscles will possibly help - physiotherapy in the form of exercises aimed at strengthening muscles will not, at least, not until the spasmed muscle problem is dealt with. 

The pain that is responding to pred but not to ibuprofen/paracetamol will be due to PMR - but the aim is to get to a much lower dose than 12.5mg. I would feel fantastic at that and so would many others! But by dealing with the tight back muscle problems I am able to control the pain with a much lower dose. For example, I was stuck at 10mg and my GP did some work on the hard back muscles which then allowed me to get to 8mg. Another session from my rheumatologist a couple of weeks ago has meant 7mg is now fine while before my shoulders were very uncomfortable when I tried 7mg.

And as I said before - maybe splitting the dose would deal with your evening problem. YOu don't know until you try.