Hello fellow polymyalgia sufferers, I was just wondering if low backache is a symptom of polymyalgia? I have lowered the pred as directed by the doctor from 10mg to 9mg could this be related?
Also has anyone else experienced itching at the front of lower legs? I wondered if it was a side effect of prednisone.
Be grateful for your comments.
Hello, As usual, questions - When did the low backache kick in relative to the reduction? Where exactly is it and does the pain stay put or go travelling? Also, what have you been up to in the last 2-3 days?
Thank you for your reply. I didn’t experience any back pain on 10mg And experience it particularly when I go for a walk.
Sorry I pressed the wrong button by mistake. The pain isn’t all the time only when I walk outside right across my lower back and right buttock.
Sacroiliac joint or hip arthritis pain previously masked by Pred maybe -might be worth requesting X-ray.
That is what I have. Identified on a CT scan in August 2017, when they were looking for UTI issues. No interest from medics. I finally got a dexa in Feb. First since Jan 2017. Having a phone chat with GP this week as I have a couple of borderline bloods and SHE WANTED TO TALK TO ME but I can't muster any interest in the sacroiliitis.
I did see a physio some years ago about SJ - but only for a few sessions.
It doesn’t seem to have deteriorated since, so I guess it’s just another one of the things that’s a nuisance generally but occasionally flares.
Just one more thing we have to manage!
My current problem - The SI joint is quieting down - but the low back muscles are protesting now if I stand or walk much. Sort of back to the beginning ...
Backs are a flippin’ nuisance aren’t they! Carrying babies both before they are born and for the next few years don’t help either…bless ‘em 😉
Mine weren't big enough to cause much trouble!!!! But I had an accident as a child that probably caused some of it - fell out of a car and landed sitting down.
Ouch! Personally, I blame the kids 😂🤣..not really!
Pred can suppress aches and pains at higher doses which then start to show themselves as you reduce.
Thank you and Dorset Lady for your replies. Should I up the dose back to 10mg?
Well, think you need to work out what it is first - if it’s not PMR, then no - maybe try ordinary painkillers for a few days. If they help, you probably have your answer.
Unless you have other PMR- type pains, I personally wouldn’t assume that is the issue….I found my osteoarthritis pains
returned at a similar level.
There are other posts on itching -have a search…filter results to your forums or PMRGCA or you’ll get a load
Thank you for your reply. Yes the pain killers do get rid of the pain. I gather then that’s it’s not polymyalgia. When I had an X-ray it showed my bones showed wear and tear as per my age. It is strange that it comes only when I go for a walk.
No it’s not strange -my back is exactly the same -and that’s a combination of sacroiliac and lumbar spondylitis…long-standing way before and post GCA.
Try rubbing some topical ibuprofen gel (not too much) before you go for walk - or do as I do, have a stop and sit as and when necessary.
Thank you again for your reassurance. I will try that and let you know how I get on. 😀
Hello Dartmoor4. The subject of itchy legs came up recently on the forum-I had this myself for a short time. One of our eminent members recommended Doublebase cream/gel which is a moisturiser with no nasties.Several people seem to have or or have had this problem but nobody could say definitely if it's a side effect of Pred.
Thank you for your reassurance. I will try the cream you suggest. It seems to me that I am no sooner over one thing and another problem emerges! Thank God for this forum and all you kind people.
Just a couple of comments referencing the recommendations here. Be aware that NSAIDS, even topical ones, can interfere with cartilage renewal, so don't use all the time, only when you actually need it. Like taking an aspirin for a headache and it helps arthritis, but don't take it for the arthritis, only the headache kind of thing. And if the Cetraben contains something like hydorcortisone (I don't know if it does) then you may find you get rebound itching when you stop using it after skin is better. If this is the case you can taper off it, and maintain the skin health alternating with another cream. Then just keep one with hydrocortisone on hand for occasional use until you don't need it at all any more. Certainly this is what I found worked for me some years ago when I had very dry itchy skin on my hands. It was valuable prep, at least psychologically, for what I eventually was going to face with pred, although that is of course much more difficult.
Thank you for your comments. I will bear them in mind. I think I will ask my pharmacist who knows my meds what he/she would recommend. I appreciate your reply. This help is so reassuring. Once I learn enough about PMR I hope to be able to help others too.
I've had osteoarthritis for a very long time, and somehow, pre-internet, I learned about the problem of aspirin (and later all the other NSAIDs) and arthritis. Which is most unfortunate because they do help pain, and our doctors tell us to take them. I take glucosamine and I think this must have helped over the years because I've had OA so long I should probably be in worse shape by now. Prednisone also affects cartilage regeneration, but one doesn't have much choice about whether to take that or not! I do take aspirin for headache and always enjoy the "side effect" of the OA pain lessening!It will be interesting to hear what your pharmacist has to say.
There are a number of articles and this one has a fairly clear description about effects of NSAIDs:
When you have rules out injury etc. Might be worth doing some core strength exercises. I may be wrong but I do believe Pred weakens tendons, so it’s worth going gently. And you can do them, sitting lying standing or kneeling. I can explain further if you would find it helpful. ( yoga therapist )
Thank you for taking the time to reply. I would appreciate any help. I don’t think the pain is due to injury. I have had it on and off for a few weeks but only when I go for a walk. It feels like a cramp pain if that makes sense. I have put on weight since prednisone and that too could be a factor. I don’t know so any help will be much appreciated. Thank you.
Try this classic yoga/ PilatesLie on the floor face up, knees bent, feet on the floor. Let you waist sink into the floor and tip your pelvis up. Think of drawing your navel towards your spine. Draw the pelvic floor up, tighten the muscles gently, as if pausing urination mid stream. My earthy teacher would say, trying to explain to men, who don’t seem to know they have a pelvic floor, ’nuts to guts’.
Hold for a second or two, then release, as if you are lengthening your tailbone along the floor.
Also helpful for any incontinence issues.
Repeat 5 times.
Do it every day.
If you get pain, stop.
It will take time to get any change in muscle tone. But having this muscle group strong will help support your back.
It was interesting to see your reply as I was on pred for 3 years and during this time I lost the use of three tendons on my left shoulder. It took forever to get anyone to take it seriously and it was only after ultra sound? photos when the damage was done, was it clear. Since then I have had physio and do regular exercises which keeps everything relatively mobile but it isn't going to get better and exacerbates all the other 'old age' problems.
How did you get the shoulder tendons problem finally diagnosed?
Good morning, In reply to your query as to how my shoulder tendons problem was finally diagnosed after about 18 months of saying that, while still on pred I had ongoing pain and reduced movements despite physiotherapy. I had an ultrasound showing 3 of the 4 tendons were now torn around the shoulder. At no point had I indulged in violent exercise or an accident but equally there was no definitive diagnosis more an assumption that it could have been caused by the steroid.
Thank you ragdoll for the information. Glad you finally got some resolution. It’s so frustrating with these diseases to figure out what’s causing problems! I’m in the midst of some new issues that started with pain in the right shoulder joint, felt different than the familiar PMR shoulder muscle pain. I see my primary doctor this week, with a bunch of other issues!
Hopefully I can get some relief.
Thanks again. ❤️
I use Avenocream for itchy skin
Thank you. I will try out all the suggestions in turn as relief from it at night would be great!
Yes very. 
Thanks on my shopping list for tomorrow. Thank you.
You’ve got a growing shopping list it seems. Perhaps take your list and let the pharmacy recommend the most appropriate for you. 🌺
I experienced itchy skin with Pred. Was on 60 mg now down to 1 mg - taken 3 yrs 7 mths with a few flares. I use double bass cream every day and it definitely helps. I have thin skin now due to Pred so it's good to keep it moisturised. My GCA started aged 57. As I've reduced Pred arthritis pain and muscle aches have been terrible especially at 5mg and lower so something to be aware of. Good luck. Keep positive even when it's a bad day if you can. This forum was my lifeline.
Thank you for your post. We are all in the same boat. One day I ache here and the next there 😂. It is supportive to know there are others going through the same thing but keep going on this long journey propping other sufferers as they go. Have a good day.
Hello Dartmoor, I a not sure if this will help or not ,knowing a little of my story, the beginning of last year I had the usual painful shoulders and pain in the top and back of my legs, No pain when I was sitting down BUT horrendous pain when I tried to stand up and walk ! forward to August and I had an appointment with my Rheumatologist, diagnosed with PMR and given Preds. starting at 15mg .What a miracle no pain from day 2, up to the present. I am now on 9.5 mg preds and the pain is back, albeit now in my lower back about 6 inches higher than previously, again, no pain when sitting ,but, OH LORD ...... I have tried taking Paracetamol to check if PMR ,which has not touched it . so . like you am wondering what next, however I actually have an appointment face to face with my Rheumatologist on Tuesday so will be able to get some advice. Ill let you know if you are interested , Best wishes .
I have the same. My version of the across shoulder pain, I think.
Polymyalgia is a real guessing game!
I found especially now on very low dose I'm developing thing I never had so the prednisone has masked things.Last winter during our lockdown I started walking seriously nit casually and would come back with back pain.
Prior to PMR I'd get it when building the garage or shed and found Aleve here in Canada worked wonders better than anything.
However this year I went out and spent big bucks on running shoes meant for runners on pavement as well as expensive hiking boots for the winter. Wow what a difference.
Once the warm weather comes I can't do it, the heat effects me to much so I swim.
Try Aleve if you can get it.
I believe Dorset Lady answered your question. My experience is if I take Tylenol large dose it often halps also lying or sitting down for a time. I think on higher dose the prednisone masked the pain in lower back but now that I am at 3mg. it comes back to haunt me. I bear it as I don't want to take more prednisone
Will try that too. Thank you. Anything that has been tried and recommended is worth a try. Thank you for taking the time to post. Much appreciated.
Ok. Don’t lift your back off the floor. Tilt your pubic bone towards your head. You are using abdominal muscles to do this at the same time, nuts to guts, pulling up the internal muscles. You definitely have them.
I need diagrams to explain it properly, but just practice, you will hopefully feel something😀
How about this..
Or just look up pelvic tilt on YouTube.
Good work Dorset lady. That’s what it should look like, but it’s what’s going on inside that counts.
I know - I attended yoga lessons for long time before GCA, but had to give it up before & during most of illness.Took Pilates up about 7 years ago.
Thought this was a simple explanation, but there are plenty of other videos available for anyone interested.
Same here, Lady, I taught for over 40 years, then PMR/GCA happened, and I had to stop. I can manage half an hour of modified practice and I know it the day after.
Hi I get lower back pain, am on 4 having come down from 40 mg in the last 15 months. The lower I get the worse the pain gets. So obviously the Pred has just been masking it. Pre diagnosis I was being sent exercises for a bad back, then I thought the exercises had wrecked my knees, then my shoulders, hips and every other joint I had. Till the physio decided it was more than a bad back when i described my neck pains, then jaw and tongue. And other GCA things. By the time I told the triage lady this the dr decided it was important enough to listen and diagnosed GCA/PMR. So I guess I will never know if my exercises aggrivated things when I was very low, but the long and short of it I also ended up with a prolapse a bit down the line. As i also developed a numb foot, I finally had an appointment for an MRI scan. The results came back after a month saying the good news was that it was nothing to cause a trapped nerve , but i did have spinal stenosis and general wear and tear and bulging discs at the bottom of my spine. So that was obviously the good news! They suggested physio, and it didn't matter how many times i stressed " but i do have a prolapse which I have been waiting 46 weeks to talk to someone in Gynocology about", they still sent exercises which to my cost I learnt were not appropriate.I'm really not an expert but in my case I know the pred has been masking something more sinister. So if it was me I would get it checked out more fully, but be prepared to wait and wait if you live in UK. It is almost enough to stop me reducing pred. It was funny when the physio said "do what you have been doing but not so much and with breaks". I said what 15 months mostly laying or sitting down. What use are these silly forms we fill in if they don't read them. Still men don't get prolapses or have much GCA/PMR.
So sorry you have / are having such a bad time of it!!!! My heart goes out to you. Without this site it would be a lonely road. Thank you for getting in touch. So appreciated.
No actually when I see what some people here have to go through I think I am one of the lucky ones. My journey so far has been short .Just feeling frustrated that everything has added up and they don't seem to be able to sort any of them out, but nothing life threatening as far as I know. I decided I would switch off when the physio said if I have any numbness around my private parts etc. etc.I must go to A&E as it could be Cauda Equina Syndrome. Good grief it sounds like it could be related to a horse. Take care
I really feel for you, you are one of the people I had in mind when I said I realise there are people on here much worse than me. Having read some of your previous posts. Since joining this site I have learnt about the meaning of lots of things which in the past I would have just explained away as old age etc. So regret not taking more time to enquire about what peoples problems really are all about. I was just so confused when they said "the good news is" and you feel you have won the lottery. then tell you exercises are the cure. Then they quote that weird name, Next step the triage woman on this subject asked what I would hope to achieve with the appointment????? Actually i would like a cure thanks. I really can't do with all this triage crap just be normal and forget the guessing games I'm too ordinary for all the garbage. Sorry rant over, take care.
I remember a bit - especially the rather scary aspect of 2 weeks in hospital alone at the age of 4+ and 2x weekly visits! However - I did have a fractured skull. It was relatively recently that someone told me it could account for the back problems. In conjunction with a scoliosis.
Interested to see replies for this. The fronts of my legs, ankles and tops of my feet get insanely itchy. Also lower back pain seems to be hanging around to get me when I lean over to do the dishes and also if I walk even a short distance.
I have the back problem - been very bad the last few weeks, I had sacroilic joint inflammation which the rheumy started to address but it deteriorated over the following weekend, I even had to get taken to A&E on the Monday morning. They weren't much help but I was there until the planned rheumy appointment - his intervention got me back on my feet and mobile! But it is only now after 2 more weeks that it is anything like normal and leaning forwards is a no-no. Not easy when you live alone! But now it is purely muscular, just below my waist and it aches when I stand or walk for more than a short time.
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