My PMR may have returned for the 4th time in 6 years in my shoulders and iliac crest/hip area. I have increased my steroids steadily from 1mg to 15mg over past 4 months. The pain has decreased and mobility returned but there is still pain in illiac crest area. Doctors will not send me for a further blood test which I feel will indicate if it is PMR or something else. I could increase my dosage again but I am reluctant to do so until I find out it is PMR. I am currently waiting a rheumatologist letter/appointment. I would appreciate some thoughts on my predicament please.
SB
Written by
Langer46
To view profiles and participate in discussions please or .
I was shocked to read that you were started on 30mg Pred 6 years ago and 'weaned off slowly' !!! after 6 months! How was PMR diagnosed? You needed to have undergone a number of blood tests/investigations to rule our other conditions.
Will you give us some more information, please, e.g. initial symptoms? It will be useful to know what led to the PMR diagnosis.
Thank you for replying. I was initially sent to a Rheumatologist after struggling to get out of bed and walking in a morning. I could not lift my arms above my shoulders. I had lots of blood tests but not sure what you mean by investigations? The steroids had an immediate impact and the symptoms 'disappeared. The Rheumatologist diagnosed PMR. Thank you so much for helping.
Hello there, in only six years it sounds like PMR never actually went rather than kept coming back because the usual time is around 5 years anyway. To have been weaned off in 6 months initially was asking for trouble; even under 2 years is pretty good going. The Pred doesn’t cure it, it just prevents the inflammation caused by your autoimmune activity from causing issues. The rest is a waiting game for things to settle whilst helping yourself with rest, a diet with greatly reduced carbs and not reducing too fast. What kind of daily life activity do you do? From what I have read on here, slowly increasing Pred during flares is usually less effective than hitting it with a higher dose and going back down. But you’ll get more informed advice from others on that one.
The issue with blood tests is that the inflammatory markers don’t always reflect the level of pain and inflammation building up. Some people never show any abnormal readings. This is why symptoms should have the greatest influence over diagnosis, though some docs are still wedded to, low markers, no PMR. For sure, alternative diagnoses can be tricky to weed out but I think in your case the Pred was withdrawn too fast and then not reinstated at an adequate dose which clouds the issue. You may also have other issues caused by Pred like myofacial pain in the buttock area. So is your GP just not involving themselves because of the pending Rheumy appointment?
Thank you for the detailed feedback. Reading your comments I feel that I know very little about PMR. I don't know what autoimmune activity is? I have quite a hectic life for a 63 year old (not stressful), teaching PE, wife, 2 teenage boys and I coach cricket 11 months of the year. I have no special diet (didn't know I had too. I have read the one book about PMR but really know little about what I have got. I cannot see a doctor. Its been over 2 years now. I can see that gradually increasing PMR from all 4 posts is not going to work. Really interesting to read that blood tests don't always give an accurate account of diagnosis. I always led to believe from the doctors it was the best indicator. No clue what myofacial pain in the buttock area is? Any information would be extremely grateful. Thank you
Look for piriformis syndrome - it is a muscle that typically causes buttock pain when tight. Look at the FAQs to get LOTS of info about PMR .
Autoimmune disorders are where the immune system goes wrong and is unable to recognises body as "self" so it attacks the body tissues in the same way it would attack bacteria, viruses or foreign bodies present in the body. That results in inflammation - and symptoms that depend on what is being attacked.
How did the doctor describe PMR and it’s treatment? Autoimmune activity is where one’s body becomes confused and sees certain tissue as foreign and turns it’s own immune system against it. In other words the general starts shooting at his own men. When this stops is anyone’s guess but about 5 years is common though some go on for longer. So while your body sorts itself out, helped by you not pushing it too hard and listening to it with an open heart and mind, you take the Pred. This is there to stop the inflammation that builds up in the blood vessels around the linings of joints and ends of muscles each day, hence the apparent cure. Stop the Pred and it builds up again and the symptoms come back. It isn’t wise to tough it out because there is the more onerous companion condition, GCA which requires much higher doses of Pred and can cause blindness, strokes and aneurysms. 15-20% of those with PMR develop GCA. All this is why you need to watch yourself and not see clearance of symptoms as a reason to pack your life out. Overdoing it seems to make one more susceptible to a flare or make it harder to reduce. With reduction the point is to find the lowest effective dose for your level of autoimmune attack, not get to zero and run off into the sunset. Talking about running, exercise is important but you remain more susceptible to injury or strain due to both the reduced blood flow to these areas and the effect of Pred on the muscles themselves. They don’t call it life changing for nothing, though if you listen to some docs and read on the internet it sounds like a piece of cake to fix.
If it is PMR (snd does sound suspiciously like it) would say it’s probably been there all along, and has been treated (or in your case not treated) by someone who has little idea of the illness.
The initial high dose and 6months of steroids would have kept it at bay for some time afterwards. …as have the subsequent periods of Pred.
But to be honest increasing the Pred as you have been doing this time is not the best way -you need an initial dose high enough to deal with the inflammation that has been allowed to built up whilst off the steroids.
Hopefully at your appointment you will get a proper diagnosis and treatment plan -and Rheumy will advise your GP how to treat your illness (someone certainly needs to)
Might like to read this - albeit you aren’t a new patient 😳-
Thank you for replying. I feel that I have not really 'scratched the surface' with what I have and how I am treating it. I can see from the posts I need to look at my diet but there is little I can do about my hectic lifestyle. I will keep you updated. Thank you
Diet certainly can be amended, and there is plenty online regarding myofascial pain syndrome, shoulder bursitis and trochanteric pain syndrome - just search.
As for your hectic lifestyle -many on here were in similar situations, and found the only way to control their illness was to amend that as well… it might be difficult, but it’s not impossible.
You just have to find a way…. If it’s work related, discuss with your employers, they have responsibilities to help you in the workplace. If it’s home related, then that may be more difficult, but there is help out there….
It may be due to the PMR - but I would suspect this is as likley to be what I call the add-ons in the form of myofascial pain syndrome plus. It could well be shoulder bursitis and trochanteric pain syndrome starting with the low back muscles. Your history suggests to me that you have been right royally mismanaged from the outset (30mg is a high starting dose and weaning off in 6 months was never going to be successful if it really is PMR).
I don't have anything to add to what Snazzy and DorsetLady have already explained - you have probably had PMR the entire time but it waned and and you rushed off pred and then the inflammation built up again. And creeping up the dose doesn't work either - you are always playing catch up.
You need a better doctor - a good GP will do better than this.
This feedback is enlightening to say the least. I have no idea what "add-ons in the form of myofascial pain syndrome plus. It could well be shoulder bursitis and trochanteric pain syndrome starting with the low back muscles". Where can I find out more information about your detailed feedback above please?Thank you for helping.
Myofascial pain syndrome is when the fascia if a muscle is inflamed - the transparent skin over muscles that you will know from joints of meat or poultry. It is part of PMR for many people with the same inflammatory substances making a muscle sort of generally tender or creating knots of hardened inflamed muscle fibres in a large muscle. Trochanteric pain syndrome used to be called trochanteric bursitis - but encompasses the low back muscles that are also involved causing low back problems and soreness on the outer aspect of your thigh. Both hip brisitis and shoulder bursitis are part of PMR and what causes the stiffness in hip and shoulder girdles.
Your massage therapist has probably identified MPS and maybe wonders why it isn't resolving - my theory is it is fed by the PMR. It can be managed in the context of PMR but it will remain chronic so a short course of therapy will only last for a time. But I am absolutely positive they are very closely linked and if you have any structural problems in your back or gait problems, it gets "stuck". For example, I have a scoliosis, if my back muscles get messed up, it gets worse, the low back and shoulder problems get worse still and it becomes a nasty downward spiral. Our backs are miracles of engineering - flexing to keep us upright which we weren't designed to be. mess up the critical balance and it goes into spasm to try to stop further damage. Result - OUCH!
Thank to everyone who has taken the time to reply to my posts. I have researched your suggestions and listened to your advice. I have probably taken the wrong 'path' by slowly increasing the dosage, but I was only following the advice from telephone doctor appointments. I have gone to 20mg this morning as the pain in my lower back is getting slightly worse as the weeks go by. My letter to see the Rheumatologist is only around 2 weeks away upon which I will go private to quicken process. I will not go higher than 20mg in case the problem/pain is not PMR. I did forget to mention in my 1st 2 posts that I have been receiving deep muscle massage for 2 years. The massage person always states the areas where there is pain are always tight. Not sure if this is useful information? I am also going to request another blood test before the Rheumatologist appointment. Thank you all again for all your help. It is very much appreciated.😀
Let’s hope the 20mg works for you… you should know within the next few days….usual recommendation is stay on increased dose for 7-10 days.Are you likely to see Rheumy within that timescale ?
As for massage -is your therapist aware you have PMR and probably more importantly aware that PMR affected muscles need to be treated differently..
Unlikely that I will see Rheumatologist in next 10 days. Probably more like 3 weeks by the time I get a 'slot'. I was not aware that massage and PMR had to be treated differently?
Your muscles are much less resilient when you have PMR, so don’t recover as quickly -so massage/physio needs to be less strenuous. If you’ve been having deep muscle massage you may find it’s not been as good for you as you thought.
See how the 20mg goes, and then come back to us if necessary-this link gives general advice on dealing with a flare -so maybe will help . If not, just ask…
One of the problems is that when you get massage it releases the inflammatory substances from the knots and, if it applies, the fascia. They are then circulating in the bloodstream - and you feel as if you are flaring. Also, if the massage is too enthusiastic it can cause something similar to DOMS (delayed onset muscle soreness) which can take a long time to resolve as well as this short term apparent flare.
I love having a good therapeutic massage and I know I may well feel worse before I feel better - but everyone is a bit different in their response and tolerance. Getting out for a gentle walk in the fresh air and drinking lots of water should help if you do have this experience.
Huge sympathy; I too await referral to Rheum. Can you chase your GP and explain that you are in pain and make them take it more seriously - they have the option to treat you as urgent if you insist, at their discretion.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Pmr
PMR or not?
**** no PMR !!!***
PMR
PMR
