Leg pain

Hi everyone

Has anyone experienced leg pain and difficulty walking when reducing Pred? I am on 5 mgs (since 1st Dec) - have been asked to stay on this dose til May by Endocrinologist as adrenals not fully functioning and another Synacthan test booked for May. I was on MTX but stopped in Sept as gastro side effects unbearable. I had a bad knee for weeks - had an Xray on 12th Jan but told it may be 8 weeks before report gets to GP. Meantime pain has started in opposite leg, knee feeling easier but now finding I have little strength to walk. My last bloods were good (13th Jan) and Rheumatologist said he felt PMR was stable but I am wondering if this situation with my legs and walking could be a flare. Today I have gone up to 10mgs of Pred and thought I would see if that helps.

Any helpful advise? Thank you so much.

[PMRpro Ambassador]

For goodness sake - I hope broken bones get reported in a rather more timely manner!!!

What SORT of pain and where exactly? Is it there all the time or does something bring it on?

[Hidden in reply to PMRpro]

Hi PMR Pro. Thank you for your response. Its aching rather than sharp pain and mostly in upper thighs tho I have a tooth ache type pain in my left lower buttock! Feel I have no strength in my legs at all.

[Hidden in reply to Hidden]

And its fine mostly when I am sitting but chronic when I stand or try to walk.

[PMRpro Ambassador in reply to Hidden]

The buttock pain suggests piriformis syndrome could be involved. And maybe greater trochanteric pain syndrome. You could look online for stretches for both - that may help in the meantime.

Sounds muscular rather than bones - so the x-ray probably won't show anything, will just rule things out.

[Hidden in reply to PMRpro]

Thank you. Will look both up.

[HeronNS]

As your knee(s?) is involved it's possible that as well as stretching some strengthening exercises can help. It's important to keep the thigh muscles in particular in good shape in order to protect your knees. Unless you can get prompt advice from a physiotherapist I suggest you get hold of a copy of Treat Your Own Knees by Jim Johnson. It's available as an e-book or as hard copy. I'd have got the e-book if I'd realized the illustrations were simple line drawings!

[Hidden in reply to HeronNS]

Thanks so much, HeronNS. I will take a look at the book.

[Hidden in reply to Hidden]

Have bought a copy. Thank you.

[HeronNS in reply to Hidden]

Hope it helps you. If you go to my profile and scroll down a bit (I post too much!) you'll find a post or two about my own knee struggles over the recent past!

[pog165g]

I had the same my rheumatologist told me it was my body reacting to the reduced pred a bit like going cold turkey, she said it would improve as time went on , which it did she also sent me to a physio to help improve things,

[Hidden in reply to pog165g]

Thank you so much. That encourages me. NHS physio has such a high waiting list. May consider going private to get some help. Xxxx

[Hidden]

My calves ache a lot and I often get a pain at the bottom of my spine area :/ I'm on 8mg and reducing again. I had a DEXA scan and all was relatively OK. I hope everyone is keeping well. David

[Hidden in reply to Hidden]

Thank you, David. After nearly three years of much uncertainty about PMR and pain etc another area of pain is disconcerting. I am finding it very hard to walk. Hopefully its nothing new and will pass. Thank you for replying. .

[nuigini]

Sounds like you're unsure as to whether it's a knee or hip issue. I have minor osteoarthritis in both knees that flares from time to time causing knee pain. Usually one knee at a time, thank goodness. Neoprene knee supports usually help relieve the issue as well as rest and pain meds and using a cane if warranted. Other than knee pain the arthritis doesn't cause pain or weakness in my legs.

I've also had episodes of trochanteric bursitis in both hips, which occurs bilaterally at the same time. It feels like spikes are being driven into the joint, which is tender to touch, and my legs feel heavy and weak. Rest, ice, and pain meds plus doing relevant exercise once things settle down have done the trick in the past.

As fate would have it I'm having an episode of bilateral hip bursitis right now, for the first time in ages. Trying my usual approach and hoping it works. I'm also at the beginning of a reduction in pred and hoping that's not the cause.

[Dubonnet]

My husband has constant leg and muscle pain, the main symptom of his Polymyalga. He has reduced to 5mg and is adamant he doesn't want to increase the dose. He finds walking any distance a problem. Strangely, he finds it hard to stand for any length of time. He has to either sit down or keep walking. He hates being on the steroids, says they affect his sleep and give him nightmares. It s a difficult dilemma. He has to take them to ease the aches, but they then give him bad dreams and he also says he has difficulty sleeping. He also problems with his eye aching in the morning, and is taking drops. He often feels he has no strength in his legs.

[Smilie67]

I haven't had leg pains thankfully, but you mention 5mgs as your daily dose which is what I'm on and am stuck on that dose for months as the pain in my arms and shoulders won't go away. I'm longing to get off steroids but I know it can't be forced and now I've become diabetic also.I hope your journey will be a good one before you come off the steroids completely

Wishing you all the best

[DorsetLady PMRGCAuk volunteer in reply to Smilie67]

If you’ve been on 5mg for long time and still in pain perhaps you need to think about upping for a few days to try and zap the inflammation that’s causing the issue. 7-10 days might solve the issue, then you can drop back down to say 5.5mg as 5mg seems just a tad too low.

Usual advice is to increase by 5mg…,but if you think that’s too much , then an extra 2.5mg might do it.

I know you don’t want to increase, but being too low is no good either.

[Smilie67 in reply to DorsetLady]

Good sound advice, I'll give it another few days and may just go up a half as I've heard even that small amount can help a lot. Good luck on your journey.

[DorsetLady PMRGCAuk volunteer in reply to Smilie67]

Thank you..but my GCA journey is over…luckily.

[Smilie67 in reply to DorsetLady]

Wow you had GCA, really glad to hear it's over. I hooe I don't get that.Take care

[Suffererc]

Yes but not when walking. Mainly early morning and not cramp it at the front of lower legs. Aching feeling in bones. May be varicose veins some which seem rather hard at moment and painful to touch.

[Brears]

I’ve just read your problem with your leg it sounds exactly like mine. Very painful have difficulty walking and night time drives me mad.Cant sleep I’ve even increased Pred to 2 mg I had got down to 1 mg.Its just suddenly flare up about 6 weeks since it started.Waiting for X Ray and Dexa Scan results.Blood test was ok.