Leg pain : A few years ago I was very ill with... - PMRGCAuk

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Leg pain

Diyfan profile image
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A few years ago I was very ill with Myasthenia Gravis and despite being in hospital for 9 weeks and various treatments I still could not swallow. I had been on 80mgs of Prednisolone for some time. The specialist raised my dose to 100mgs per day and I very quickly got better however the day after I started this very high dose I developed excruciating pain in my legs and feet. Six years later I still have quite bad pain but bearable I take Gabapentin for pain control and it helps a bit. None of my doctors seem to believe that the pain can be associated with the Prednisolone but the coincidence is too great for me to believe anything else. Has anyone else had this experience?

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Diyfan profile image
Diyfan
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SheffieldJane profile image
SheffieldJane

I would just like to express my sympathy for the horrible ordeal that Myasthenia Gravis has surely been. I am tremendously sorry that you are now suffering foot and leg pain in the extreme. It is not something I have particularly associated with Pred though many unpleasant symptoms are at the high doses. Were you put on other drugs for your MG? Could they be the culprit? It does sound circulatory to me. Have they looked at peripheral neuropathy at all?This site is comprised of the sufferers of PMR, GCA and LVV. An autoimmune disease of the arteries. There may be an MG site that can offer more useful advice and support to you.. you should at least be offered an MRI scan.Don’t be palmed off.

Diyfan profile image
Diyfan in reply to SheffieldJane

Hi SheffieldJane. I appreciate your kind words and sympathy it’s more than I get from my doctors pain relief doesn’t seem to be in there remit. They do not believe that the onset of the pain is associated with very high doses of Pred but to me it’s more than coincidence. I’m on Azathioprene which takes months to kick in but seems to be keeping the myasthenia at bay, fingers crossed. I have not been diagnosed any arterial disease and my legs actually look fine. All the doctors do is “scratch their heads” and say bad luck. Fortunately I have just been assigned to a dedicated Myasthenia clinic so I’ve not lost all hope. My daughter seems to think that it could be associated with potassium deficiency and since I’ve increased my intake my legs seem a little better.

SheffieldJane profile image
SheffieldJane in reply to Diyfan

Your daughter sounds sensible. I have had good relief from cramp, heavy legs and restless legs with Magnesium. So who knows. Wishing you a speedy road to recovery. 🌻

readingbooks profile image
readingbooks in reply to SheffieldJane

I am wondering how much magnesium you take for it to be effective , Sheffield Jane ? I have the same problems you describe and take 250 mg daily. Some nights are fine and others I wake up several times with cramps which can be severe and the heavy legs are really persistent. Many thanks.

PMRpro profile image
PMRproAmbassador in reply to readingbooks

I don't take it regularly but the daily limit for most forms of magnesium is dictated by your gut reaction ;) - it is a very efficient laxative!

The RDA for magnesium for older women (over 30) is 320mg so you could take more and see what you need for a laxative effect for you. But the RDA is usually a conservative figure.

readingbooks profile image
readingbooks in reply to PMRpro

Very helpful. Thank you.

SheffieldJane profile image
SheffieldJane in reply to readingbooks

I have actually taken Magnesium during an episode of restless legs and had it recede within about 20 minutes. I don’t take it all the time more by accident than design.

Diyfan profile image
Diyfan in reply to SheffieldJane

Wow now that’s what I call a result.

blondie120 profile image
blondie120

Hi Diyfan,I just read your post, i can hardly believe you were on such a high dose of pred 😳, ive been on 30 mg a day for a week once then tapered down , im now on 10 mg a day for the last 3 years and prob for the foreseeable future, i take mestinon for my MG , 60mg up to 5 times a day i drive double deckers so i have to keep my doses even while at work, im off sick at the mo , had awful flare an bloodwork came back as high rheumatoid factor again 64 which is quite high i ache so bad feel 100 yrs old right now, you were saying you think pred causes your leg pain ? I have alot of leg pain not just my joints thats OA an prob RA but i get shin splint pain feels like my muscles have ripped off my shins an heel pain plantar facilitis so bad I literally cant walk, sometimes i cant bear any pressure on my legs at all i wonder if you get any of these symptoms too ? None of this is any fun is it , when i can i try to do the gardening so i can forget for a while, i hope you day has been nice take care 🌺

Diyfan profile image
Diyfan in reply to blondie120

Hi blondie120. And I think I have problems how on Earth do you cope with all that and still drive a bus. I was on 80mgs a day for some time plus Mestinon and Azathioprene but still couldn’t swallow had to be fed through a tube. Great for weight loss but no fun at all. I had been in and out of hospital mostly in and I think they were getting fed up with me and the big white chief said quite casually put him on 100mgs. Well within a week I was at home but with excruciating pain so bad that I would not have wanted to live with it if it hadn’t eased off very gradually. Why don’t you try upping your potassium intake it’s helping me. Not a lot but I’ll take any improvement.

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