PMR and aching legs

[Yogurt55]

Hi everyone I am new here, I have recently been diagnosed with PMR, and have been on Prednisolone for 3 weeks. The pains in my shoulders have gone away but my leg continue to ache, mostly in the morning and by late afternoon they are ok. From experience could this still be PMR or as my GP suggest they may be something else going on. Do suffer of PMR experience aching legs / joints.

[Bignorhill]

It has always caused me problems in the hip area but not in the knees. If I run afterwards I have stiffness in the muscles around my hips. It has, also, caused stress on my Piriformis muscle which is in the buttock.

[Yogurt55 in reply to Bignorhill]

Thank you for you reply every bit of information is much appreciated

[PMRpro Ambassador]

Welcome!

Every morning your body sheds a load of inflammatory substances called cytokines at about 4 to 4.30am. These get into the body and cause a new wave of inflammation which leads to a revival of symptoms until the daily dose of pred gets into the system to combat the inflammation and relieve the symptoms. Studies have found that the ideal time to take plain uncoated pred to reduce this effect is 2am - it reaches its peak by the time the cytokines appear and can deal with them before they can cause inflammation. The longer you leave it after 4am to take your pred, the longer it takes for it to act as there is more inflammation to deal with. That is assuming you are on plain white uncoated pred - if you take enteric coated or gastroresistant pred each step will take considerably longer.

It also depends on what is causing the aching legs - if you have hip/trochaneteric bursitis, it is likely to take several weeks for the pred to relive it, it took months for mine to fade. Or did you do too much the day before? Your muscles remain intolerant of acute exercise as the actual disease process isn't affected by the pred at all, it just relieves the inflammation and, so, the symptoms. If you feel really good in the afternoon and do too much, your muscles may be more stiff and sore than they need be but it is difficult to tell which is that and which is new-day PMR stiffness.

What is your GP suggesting as an alternative/add-on? I think it is early days yet - what dose are you on? You need enough and not everyone gets the miracle result in a few hours that some expect. The top experts say to look for a 70% global improvement in a week - some never get rid of all their pain and some take a long time to get to their best result. Some may even take a few weeks to get any result if the starting dose isn;t quite enough for them. The up-to-date recommendations suggest a starting dose of up to 25mg may be required - the 15mg that so many doctors use may not be quite enough.

[Yogurt55 in reply to PMRpro]

Thank you very much for your reply, very informative, which will help me managing the condition over the coming months

[Blearyeyed in reply to Yogurt55]

Definitely , if you are new here you just got advice from one of the ' best in show' on the forum , a real expert , it's worth listening to what Pro says!!

You will get lots more of them dropping in too , like Dorset Lady , Mrs Nails , Poopadoop and Heron .

I'd add my own bit of knowledge but I'm about to make my dinner , maybe later!

Take care , ask questions , we are all here for you xx

[Yogurt55 in reply to Blearyeyed]

Thanks so much

[Daisyfield]

My shoulder pain went v quickly but for about two months after diagnosis I got really achy legs in deep big muscles. Like cement had been poured into them. Most of that has gone now. I was diagnosed in April 19.

My main prob is tiredness and I feel weaker than I used to. Prob because I have done less exercise and also pred.

[Yogurt55 in reply to Daisyfield]

Thank you for you reply every bit hepls

[SheffieldJane]

My first thought was like your GP’s. There is no harm in having investigations to discount other conditions. Secondly you may simply not be on enough Prednisalone to mop up all the pain. Start doses are anything from 15 mgs to 25 mgs. Has the GP tried upping your dose?

I have certainly had heavy leg pain on my PMR journey but I have Osteoarthritis too.

[Yogurt55 in reply to SheffieldJane]

Thank you for your reply, every bit of info will help me manage this condition

[Hidden]

My legs ached for quite a while even with pred, especially in the mornings. I did have coated pred and took it in the mornings so it does take a while for it to ease in the pm. After a year or so I adjusted when I took my dose to address this. But for now you may need to just consider taking the pred at 2am or on a toilet trip during the night to get the morning relief. I had problems with climbing stairs for a few months then it eased. If I overdo things with my arms or legs I got the muscle soreness mentioned by pmrpro. I also developed piriformus syndrome and standing or walking up inclines was very painful. These things do ease significantly over time so you need to ensure you rest between activity and check your body doesn't react to the activity.🌻

[Yogurt55]

Many thanks

[scats]

Heavy legs have always been one of my main symptoms and as Poops says if I over do things muscle soreness in my legs will let me know. Eventually I changed the time I took my pred to help things. I found that taking my coated pred with my evening meal meant I no longer woke with leg pains

[Yogurt55]

Many thanks

[Whittlesey]

For the legs, would also consider meralgia paresthetica. I have this and had it before being diagnosed with GCA. A swollen artery could exacerbate this, I have been told. Two doctors believe there is a relationship. It too, is rare. I guess we all are a little rare. It can be very painful. The lateral cutaneous nerves, attach, wrongly to the inguineal tendon. In its worst stages, my thigh muscles go into spasm and walking is difficult to impossible. There is some on the net, which can be helpful. I use arnica salve, right on the inguineal tendon at the thigh. Capsacin (sp?) is helpful for a lot of people, too hot, for me. Keep the legs straight, during an acute flare.

I may be going for a second operation on this, would be a nerve cut, on both legs, the cutaneous nerve. I had one release in 2007, helped tremendously. The nerve moved back to the tendon and reattached. Again very painful, walking impeded, not more than a block and the pain starts. It has moved, also to my back, painful debilitating spasms. I am getting phy therapy for this.

Because meralgia paresthetica is rare, many doctors are not aware of this. Then, initially, some times, the same problems. They don't know what it is -- it's something else, pain meds, etc. Once again, be insistent -- it is your body. Show the research, and let them test.

When they operated, I had a severe case, 5 branches of the nerve were impinged under the tendon. very painful.

hope it comes out well. all my best, Lynn --- Whittlesey

[Hidden]

Hi I just wrote a post how my moms legs hurt so bad after taking predesone she was screaming out loud . MD said keep taking it she stopped and so did the pain . she said Never ever take that drug or any branches of the drug any spin offs its a killer and it will blow up your face so you will look like the moon. its basically a steroid

[PMRpro Ambassador in reply to Hidden]

It isn't "basically a steroid" - it IS a steroid. It is a powerful and important medication that saves lives, prevents loss of vision and allows a decent quality of life in patients with certain conditions. It would be helpful if you did not post such comments on this forum as pred is the only option as a first line treament for the members here.