I increased Pred from 6mg to 10 just before Christmas as I had become very anxious and felt tense around the shoulders and they began to feel stiff - I felt this was as a result of a knee problem that means I cannot drive nor walk very far at the moment. However, I decided to drop down again and first went to 9, then 8 mg after a couple of weeks, hoping to get back to near the dose I was on. The anxiety and soreness returned, so I increased again to 10mg. on 31/1/23 I decided to try again and went to 9mg. However, I feel soreness in my arms, neck and tightness in my upper back, some discomfort in my hands and the tightness makes it feel as though I am tense and maybe this is making me anxious. I am doing exercises to strengthen the thigh muscles (as instructed by physio) and some general exercises, although I don't think I am overdoing it. Do I just wait this out as it is less than a week and see if it goes as it may be just due to the change rather than a PMR flare? So frustrating having gone down to 6mg to be stuck up at 10mg. Any advice welcome.
Decrease in Pred - now feeling a bit tense with s... - PMRGCAuk
Decrease in Pred - now feeling a bit tense with sore neck & shoulders
I know from personal experience that trouble in one part of your body can trigger a chain reaction elsewhere - such as your pretty severe sounding knee issue.
I get awful pain in my neck and the back of my skull from cervical Spondylosis. I know now that it is not an indication to increase my Pred dose. The damp cold weather is making arthritic pain ping quite badly - again, it’s not my PMR or GCA.
I feel that you need a proper diagnosis, preferably from a Rheumatologist. The anxiety is another matter. I know Pred makes you prone to it and it’s horrible. This could be a matter for the GP. You shouldn’t have to put up with it. It may be that a few weeks of talking therapy could give you strategies to cope.
It is very difficult to access the help we need right now, but we must try.
Thanks, SheffieldJane - I wondered about the same thing so will stay on this dose and see if things improve. I am due to see the hospital Physio for assessment on 9th - he sounds much more proactive than the physio at the surgery, saying that they will be able to determine any further treatment once they have assessed the knee. He also said that the symptoms did not give a typical presentation of OA although he knows it is there and would expect it. Frankly, the locum GP, who is the only one present at our practice and who I have seen before, will just sit back and say you are getting old - what do you expect - he's done this before - and I'm still in my 60s. I will wait it out and see the physio next week. Strangely the knee is more painful as well .... never rains, does it. Thanks for your response.
Your locum GP is not necessarily wrong -my previous GP said to me once -most people over the age of 50 show osteoarthritis for some it causes a problem, for others it doesn’t.
The hospital physio will be probably be part of the musculoskeletal team so has more options open to decide the way forward for you.
Please let us know what’s suggested.
Thank you, DorsetLady - I will. I know there is OA and wouldn't dispute that - it's treatment that I want to sort out. At present taking Devil's Claw for pain and doing all the exercises I've been given. It's the third episode in three years which always leaves me unable to walk for a period and then I spend months improving only for it to go back to pain and swelling as soon as things begin to feel 'normal.'
Yes it's miserable isn't it....
It sounds to me as if this is all stemming from tense muscles in the shoulder/neck area - and that becomes a vicious circle as being tense due to anxiety causes the pain and that worries you more. Have you tried heat around your shoulders? Try googling sternocleidomastiod muscle problems and exercises to help that. Here's just one to start
Thank you PMRpro - I wonder about that too, but no anxiety at 10mg. I managed to sleep better last night as put a hot water bottle under the shoulders. As before, I shall wait it out and see. Many thanks.
You sound in the same position as me though i have managed to reduce now to 5mg (having gone back up to 10mg last year after getting covid). The flare caused a big issue witb my knee, initially pain like a toothache or like someone had whacked it with a hammer. It has improved 9 months later but still cant walk properly. Knee xray shows some damage and waiting for an MRI and consumtation. At 5mg i dont feel good (weird pains all over my body and especially neck and shoulders, muscular disruption though the strength is not bad. But as my inflammatory markers are down i am wondering if, after 2.5years the steroids are doing as much harm as good so am trying to weather the reduction whilst waiting to find out exactly what my knee issue is
Thanks, Marionofnorwich - yes, I sometimes feel that there are at least two battles to fight - PMR and the steroids once you've been on them a while. Good luck and I hope your reduction continues. I am determined to work my way down as well, but will do so slowly.
As someone with osteoarthritis (knees, shoulders, thumbs, back, feet...) and lumbar spinal compression, I know only too well how hard it is to sort out what's what. Over the 8+ years with PMR I've learned how to sort out the non-PMR issues with some degree of confidence, through some combination of ice, heat, rest, a quick high shock with anti-inflammatory meds and exercise as tolerated.
This includes pain and weakness in the upper back, neck, shoulders and/or upper arms. This combination can be the sure sign of a flare for me. I'll try the other things for a time, but if it continues, and/or gets worse I go with a flare and increase prednisone.
I do regular exercises for back and leg issues, some provided by physio and others I've researched, such as those for hip bursitis, which will pop into the mix from time to time.
As a 73, soon to be 74 year old woman my body is bound to have a lot more issues than just PMR. 
Yes, I can appreciate that, nuigini and I am just beginning to find my own ways with this as well - this community has been a great help. I've been researching exercises and supplements and already follow a healthy diet. I have decided to do as much exercise as I can, as much weight-bearing as I can and use breathing/meditation techniques as well. This is why I am not going to increase Pred again. Somewhere there will be a balance. However, I am hopeful that the physio can direct my efforts in the most useful way possible.
Btw, there is a good article on osteoarthritis in The Times this morning, for those who may be interested.
Yes as Nuigine says it is so difficult to sort out what is happening with a ongoing (and ever changing) sensory cocktail of the effects of PMR, Pred and the mysterious someting else... Thank you PMRpro for the SCM exercises and drawing attention to that area. Like you Miserere I am on 10mg and trying out dropping by .5mg in a slow slow taper. I have that stiff shoulder which feels as though it carries pain deep inside if I pay attention. I am told I don't have osteo bar in hands and feet and the CT scan told me it was PMR as near as dammit. I am working with breathing exercises to open up the diaphragm. One day there is pain on the chest area that could be costochrondritis - the next day knee pain. Was it cleaning the car? Or too vigorous yoga?? I/we cannot know. The panic of the first eighteen months has subsided and now in my fourth year I am coming more into a calmer search for a solution for the condition - in other words with my physical body. It is teaching me a lot about our possibilities for healing that go beyond the drugs though they have their place. Don't forget that Bruce Lipton has scientifically proved that a positive and loving mindset directly affects the health of our cells. The support here is part of this.
Exactly, Alchemy8. Was it the standing preparing food, was it the foot leaning to the left when at rest - that's when the worst pain occurred. Now - I can't walk at all today. Too much pain on weight-bearing. Can still bend and flex and no pain when touching it. The enforced change in movements and enforced rest now means back pain here and there. However, I have worked out it's not PMR.
Physio on Friday, assuming I can make it - otherwise not sure what I can do - but onward and upward. Regular TM practice coming up and very welcome.
Sorry if I'm moaning - I've never been ill before 2021. It's sometimes coming hard.
Well, have been doing physio exercises for nearly four weeks and due to return next week. Not sure what has happened but my knee is worse, not better. Can hardly stand on it. I feel it is strained and maybe some of the exercises were a bit too much but I wanted to do the best I could. Looking back at my MRI scan it says at the top 'soft tissue/meniscal tear rather than simply OA.' No-one has mentioned this and now I think the soft tissue has probably been strained further. I've just reduced from 10mg to 9mg but am hoping the pain and frustration doesn't make the PMR flare - or maybe the knee is linked to that?
Don’t think I’d have reduced whilst still being in pain, even though not necessarily PMR related, but it is putting an extra stress on body.
Have you used any topical gel or painkillers alongside physio exercises? …does sound as if the exercises were perhaps too strong, or not quite the correct ones…
And you’re not loaning, it’s very dispiriting and debilitating being in constant pain… do hope you can make Friday’s appointment and a resolution to current issues.
Thank you for responding, DL, I appreciate it. I was down to 6mg before the last flare which was when the knee began playing up again, so I am keen to reduce or at least keep the steroids where they are. I've used Flexiseq and witchhazel and arnica gel. The physio I saw was very young and I wonder if they can relate to older people. I am very flexible as a myofascial massage therapist noted last week when I saw her - if she had not tried to sell the 'be activated - muscle activation technique' - promoted by Douglas Heel I might have gone to her but I only need so many things to think about at the moment.
The trouble is I have actually managed to strengthen some muscles, which is great, but now I have these problems. The soreness and strain is now down both sides of the knee and the pain is below the knee cap on weight-bearing. I still think the ligaments/tendons are strained and probably the meniscus is torn - I do have OA but I've had that for some time - I really don't feel it is the major problem. I'd like to see an orthopaedic specialist for an opinion and will contact the surgery tomorrow with a view to seeing the senior practice nurse again. He was much more helpful than the GP.
Painkillers - I am allergic to paracetamol so with steroids I think I the only thing I am left with is cocodamol? I try to resist taking them, to be honest. At present I've stopped the exercises as I don't want to do more damage. You can't do wrong for doing right sometimes, can you?
Thanks again.
No you can’t do right for wrong sometimes….and I think you need a referral to orthopaedic surgeon…been there, blah, blah, blah. Hope that’s sooner rather than later as well.
Just to update, DL. I saw the practice nurse this afternoon. He has put a referral through to an orthopaedic surgeon as he said there are no other options and it has been going on for over 2 years. Thank heavens, is all I can say. It will take time for any appointments to come through and then there is also funding to be applied for, but at least progress is being made. For me this has come at the right time as I was beginning to feel very low.
As I left the surgery a lady came out behind me and asked what the problem was (she could see me doing an impression of Quasimodo), so I told her and she said that she had had two knee replacements done at the hospital I am hoping to go to and the first had seen her back at work in six weeks and the second, a few years later, had taken a bit longer but she had already had more than one keyhole surgery on it, so was not surprised. She praised the surgeon I hope to see highly. She also followed me and gave me her name and address should I want to ask questions or talk about anything that came up. My faith in human nature in everyday life was suddenly restored - how wonderfully kind and I shall ensure that I do the same one day.
Lastly, my husband kindly went to pick up a prescription for me earlier in the week from the pharmacy attached to our surgery. Whilst in the car park he heard a horrible grating/crushing sound and looked around to see a 4x4 parked in the wall of the surgery. Aha! he thought - a frustrated and disgruntled patient. Anyway, he went over to help, as he always does, but found that the passenger door was jammed because the driver side had been compressed. However, he opened the passenger door and started to help the driver out that way but soon found that his foot was trapped. It's Ok, said the driver, my leg is false! You couldn't make it up, could you? Anyway, he got the driver out who, apart from saying he felt a fool, bless him, seemed in perfectly good health! Always finish on a high ...
Good news about referral and the reports re replacements/surgeon.
Ouch about 4x4 - and love the false leg! …😂
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