I would value your opinion on my current situation please. I posted 2 months ago as after nearly 3 years on pred I had slowly reduced and stopped early October 2019. I had slight shoulder pain on right. This then spread to left hand side. I had 3 sessions with osteopath but no improvement. I went to see GP in January who said joint movements ok, muscles along collar bone and shoulders very tight and suggested having 2 or more massages. I also had blood test which were normal (I have never had raised levels). After 4 sports massages no improvement and pain getting worse.
Possible PMR had been discussed with GP so on Monday I phoned to request telephone consultation. We decided to try me on 15mg of pred for 5 days. It is now day 4 and shoulders and arms still painful when dressing and reaching at certain angles (just like first time round). Back in 2016 after 6 months of pain by day 2 of being on 15mg of pred I was pain free so would have expected improvement by now.
The arm/shoulder pain is exactly like it was in 2016 but I am not fatigued and I can bend down to touch my toes which I couldn’t do then.
If it is not a flare then do you have any ideas as to what it could be. Thanks.
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Have they also done any other tests since January , like x-rays , ultrasound , dexascan or other blood tests to check for other conditions as well as PMR?
Have they tried you on any Nerve or Muscle relaxants or Nerve Pain or NSAIDs medication to see if your symptoms improve with Medication other than Steroids alone?
Did you get any details from the Osteopath about what they had found in their examination?
Your Massage , if Sports Massage , and quite intensive , too long , or too deep , may not be helping at present and could have added to a Flare of pain in many Chronic Conditions . Many issues can been aggravated by the wrong sort of massage , especially Nerve or Inflammatory related ones . Massage can also cause a release in toxins into your system that can trigger your immunity and inflammatory response and therefore Pain. If you are having the Massage as a treatment for existing Pain issues rather than mere muscle relaxation this can be why you feel worse and more Pain is triggered after it.
You may still have active PMR , it is quite common for people to get to Club Zero before the PMR has stopped being active and then it's activity and inflammation can build up again over months. This seems the most likely option for your symptoms.
Slight differences in your symptoms or how quickly you respond to the Pred are also understandable at this point. You are not in the same physical condition as you were back in 2016 , so other Muscle and Joint Fatigue can be adding to the length it takes for your body to respond.
It could , however, also be part of another condition that was masked by Pred Use and coping with PMR , like OA , RA Neuralgia or Fibro .
Or even be the Joint and Nerve Pain that is left over from having PMR and takes time to get over and manage while you finish your Recovery.
Recovery can be very hard and takes a lot longer than we expect . It can be a year before you are " Fit" and other side effects and symptoms that accompanied your PMR can linger on and still need proper care.
This sort of Recovery Pain can also become worse if you have not gradually got back to previous activities and are doing too much for your current Muscle and Bone strength.
It is definitely worth persisting with your GP and seeing if they can see any other problems at the same time as testing if your PMR has returned by seeing your response to Steroids.
It's important to get a hold on things quickly if PMR has returned , but equally important to get other things under Management if they can't be ruled out too.
Hi, thanks for your advice. I am awaiting appointment for Dexascan (last one 3 years ago which found osteoporosis and osteopenia). No other medication or tests yet. GP says he wants me to see Rheumatologist. Osteopath said all muscles tight and worked on R arm but when L arm started then no real advice. I had told him about the PMR. Masseur again said muscles very knotted but would not relax, again PMR discussed with her but grey area. Just had another blood test today and another telephone consultation due tomorrow. Do you think 5 days on 15mg is not enough time to see if it helps?
I thought I was being sensible when I came off pred last year. I had been gradually increasing walking distance and did a 5 mile coastal path walk early September with no apparent effect so gradually continued increasing (11 miles the longest ). Seemed ok!
First , you didn't do anything wrong coming off Pred if you were at a point when you felt confident , weren't suffering any obvious symptoms , and you were at a low dose. Many people don't realize that they still have Active PMR until they reach Club Zero and then the symptoms come back , then they need to go on a dose like yours for a few weeks but do a rapid Taper closer to the low dose they were on before , to manage their Pain and Taper from again .
Although , you have had Pain and symptoms beginning to build up since , you also couldn't have been sure until recently that you were suffering from PMR symptoms again until it felt more like those you experienced before , so again, you haven't done anything to tell yourself off for.
You do have other Bone Health issues that may be adding to the type of symptoms you are suffering so it's well worth chasing up that Dexascan to be sure wether Osteo issues also need some management .
You will probably respond better to PMR treatment when this , or any other Nerve or Muscle Pain , is being treated too.
You could discuss with your GP options like Nerve relaxants and Physio to see if these improve your current symptoms.
You seem to have been building up your exercise levels before you finished Pred so that was a good thing but you may also be doing a bit too much , adding to other Muscle or Neuralgic Pain because your body was not fully strong yet , as you were still in Recovery and you still need to Pace Yourself.
That's also why not responding as quickly as you did first time around to 15 mg doesn't mean that you haven't got Active PMR . Many people take longer to respond to the Medication both after stopping it altogether , or when they increase their dose during a Flare. The body is less fit and takes longer to respond to treatment.
My suspicion would be that the PMR has never gone away but was being kept under control by even a very low dose of pred - it is really not uncommon for the symptoms to reappear in a few months after stopping pred altogether. Most people who have a relapse like this say the second time is different from the first in all sorts of ways and it is also not unusual for a relapse to need either longer or a higher dose to get it under control. And there is often a much greater contrast the first time round so it seems more effective.
That is the most likely answer I fear - but it doesn't mean it isn't something else so some thought is a good idea on the part of your GP.
Thanks for your reply. I think you are right. As I have said to Blearyeyed I was perhaps too optimistic that it had gone and did too much too soon. Its interesting too that second time around it can present differently to the first time. I will keep you updated.
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