I have now tapered down to 12 mg after a flare of GCA which meant a few months ago I had to 'go up' again after reaching this point once before - so I am effectively on the lowest dose I have been on for PMR and GCA for almost 2 years. All has seemed to be going fine and dandy recently after recovering well from a damaged (not ruptured) Achilles tendon which gave me horrendous nocturnal calf cramps for hours on end for 2 weeks. I thought around then that I may have been developing some Pred related myopathy after raising my Pred dose for the 2nd time to 30mg - with a feeling of tightness/constriction and some pain in both my hands and feet occasionally. I am wondering if anyone could shed some light - this doesn't happen 'all' the time but comes and goes ... not 'pleasant' but I feel relatively fortunate 'so far' ...
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Rimmy
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Rimmy
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Have you tried taking a Magnesium supplement? I think it would be worth it, a lack will cause cramp which is horrible and alarming. Although it is counter intuitive, stretching the effected part is good. You have been a busy bee, perhaps stretching out, after physical exertion, like athletes do might be wise. Cramp pops up a lot on here. I only ever had it as a growing child previously.
Yes try Magnesium. An old Achilles problem resurfaced once I was taking Pred and is now under control since taking Magnesium. I’ve also lost the calf cramps I sometimes get after taking a dance class. Stretching is good too as Jane said.
Hmmmm?. Have you tried Magnesium? Remember I was getting deforming cramps in both my hands and feet and I started taking Magnesium... I very occasionally still get cramps in my hands that actually deform them, but not nearly as much as I used to. I also sleep better since taking it. 🤔
REVISED RESPONSE: OH SORRY.... should have read previous responses to your post! 🤭 DOH!
Thanks Melissa, SJ and Peace Lover for the Magnesium suggestion. i will try that again - I did when I had the calf cramps but to no avail although I hope it is as 'simple' as that - I am used to things being much more complicated so now my cramped fingers are crossed !!
Thanks PMRpro - I am going to try Magnesium as I said - I am just a teeny bit sceptical that is the problem as when I tried it previously during the 2 weeks of calf cramps I had it didn't seem to help - on the other hand these aren't quite so dramatic but more like continuous stiff crampy feelings rather than strong contractions - so I'll see how it goes !
Are you on 12mg now? Or did you go on 30mg recently?
Magnesium as everybody has said , have your Vitamin D levels been checked recently ?
That can also cause more joint pain and cramps if you are low.
I do a few calf exercises just before going to sleep because of the tight tendons.
Good Toes, Naughty Toes .... As they used to call it in ballet class!
Lay sitting up against your pillows then with feet together point your toes slowly forward and down hold for a moment ( that's good toes).
Then slowly lift your toes and feet up from the ankle legs still resting on the bed when your toes are pointing at the ceiling try and move them to point more to you ( not so it hurts but so you feel it in your calfs that's bad toes). No need to hold slowly back to good toes again. Do it about 10 times and relax.
Then I rotate my ankles in circles clockwise for eight then anticlockwise again . I do it twice if I am already feeling very tight.
I do it before up in the morning too, with a cuppa or a drink of water
I also rotate my wrists and hands , wriggle and rotate my fingers and roll a small rubber squash ball between the palms of my hands . I slowly look up to the ceiling and move my chin to my chest and look from side to side to . In the morning I drink a full small bottle of water and a night half a bottle before doing it to stop dizziness .
You probably already have a system but I hope that helps. Oh, I also use some almond oil on my hands and still sitting raise my thigh on some cushions so I can get to my calfs and rub from ankle up my calf towards the knee quick firmly and quickly on each side as it also seems to loosen the calf and ankle .
Let us know how you get on , so sorry and hope you get a better night's sleep. Be xx
Thanks Blearyeyed - I am actually 'bleary eyed reading this as have just woken up ... sorry if I confused you - I am currently on 12 mg after tapering down (again) from a flare. I have been doing similar stretching exercises and generally get a reasonable amount of exercise. Sometimes after lots of weeding and pruning in our gardens I think it may even be 'overuse' !! I do appreciate you response and will give 'everything' a try !! - thanks.
How long after getting to it again did the pain and cramps increase?
Like people often say on here , you may be in that period of adjustment that if you balance rest and some exercise with a top up of your usual painkiller may work itself out within a few weeks.
Extra magnesium, zinc, manganese , vits C, A, E and D and omega 3 ( not a combo as omega 6 can increase inflammation) can help with that.
The massage of the calf and the Achilles area really helps me . Pinching and holding the back of the ankle between three fingers and thumb holding then quickly releasing often brings relaxation in the muscles and relief.
Do you ever get hand and wrist massage or do it yourself?
If it lasts and becomes too much for you personally you may need to reassess the steroid dose again.
I have only reduced to 12 mg recently and have had the cramps and just a few small aches and pains. i have had to taper back down reasonably 'fast' after the flare I had due to the problems of weakening tendons - and the consequent Achilles problem I had was the worst of this. A Pred 'side effect' for sure - I have read Pred actually alters the micro- architecture of our muscles and tendons and can make them much more susceptible to injury and as PMRpro often mentions 'DOMS' - or delayed onset muscle strain. The Achilles issue was very painful and slightly nightmarish and the worst problem I have had after nearly 2 years on Pred. As this only occurred after having to return to 30 mg for the flare I agreed with my GP I wouldn't stay 'up' there any longer than I had to - although it has taken me a few months to get back to this level. Fortunately I have recovered well from that and my then rather 'atrophied' looking calf muscle looks 'normal' again and works well ! I recognise these much less painful issues I am having now with hands and feet may also be a minor 'bite back' from my tapering but I can cope with these as long as I don't get any obvious GCA symptoms returning. I will try some of the supplements and hopefully they will make a small difference at least.
I went to the Doc with beastly steroid-induced distorting hand cramps. He told me that a quick fix is to swish your hands around in a basin of water as hot as you can reasonably bear it, for two or three minutes. It works for me - such relief! He also prescribed quinine tablets, which seemed to reduce the attacks a bit.
I am right down to 5 mg now, and am no longer getting hand cramps.
Could be sounds as if that is often related to AI diseases as well. Pleased to read it isn't necessarily a major problem. At least mine isn't too problematic (so far anyway) as I don't fancy any other diseases - in fact I have decided to 'refuse' them !!
"Raynaud syndrome, also known as Raynaud's phenomenon, is a medical condition in which spasm of arteries cause episodes of reduced blood flow.[1] Typically the fingers, and less commonly the toes, are involved.[1] Rarely, the nose, ears, or lips are affected.[1] The episodes result in the affected part turning white and then blue.[2] Often, there is numbness or pain.[2] As blood flow returns, the area turns red and burns.[2] The episodes typically last minutes, but can last up to several hours.[2]
Episodes are often triggered by cold or emotional stress.[2] There are two main types: primary Raynaud's, when the cause is unknown, and secondary Raynaud's, which occurs as a result of another condition.[3] Secondary Raynaud's can occur due to a connective tissue disorder, such as scleroderma or lupus, injuries to the hands, prolonged vibration, smoking, thyroid problems, and certain medications, such as birth control pills.[6] Diagnosis is typically based on the symptoms.[3]
The primary treatment is avoiding the cold.[3] Other measures include the discontinuation of nicotine or stimulants use.[3] Medications for treatment of cases that do not improve include calcium channel blockers and iloprost.[3] Little evidence supports alternative medicine.[3] Severe disease may rarely be complicated by skin sores or gangrene.[2]
About 4% of people have the condition.[3] Onset of the primary form is typically between ages 15 and 30 and occurs more frequently in females.[3][4] The secondary form usually affects older people.[4] Both forms are more common in cold climates.[4] It is named after the French physician Maurice Raynaud, who described the condition in 1862."
I had that about 2 years into the polymyalgia ,I am not so troubled by it now in my hands ,might be the Rheumatiod and Osteo Atheritis drugs I have ,I was taking steroids at the time but I cant remember when it eased off but it is definately not as bad in my hands and it was terrible at one point , Hot water relived it briefly .I have a Parraffin wax hand bath too bought as Christmas present .Mainly cosmetic but ohhhh how warm and relaxing for the tendon problems .I wish I could get my shoulder in it lol .Worth putting on your Christmas list .
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