I used to get this a lot pre-diagnosis/Pred starting, once I was hit with the 40mg of Pred it stopped completely, but seemed to restart once I got down to about 7.5mg after a couple of years, and now I am very slowly tapered to 3mg it seems to be happening a bit more. It's the only thing that has reappeared in this way. My bloods and the way I feel currently are all ok. This is more of a niggle than a big issue, but I haven't seen mention of it anywhere in relation to PMR or GCA/Takashu's.
It affect my hands or my feet and all of a sudden I get a cramp (I am assuming in muscle) and it is so strong that I can physically see it then pulling the joints out of alignment - so for instance my little finger (or thumb depending on what side the cramp is) will get pulled over at an angle. I have to keep massaging the affected area and wiggle and twist it around and eventually - normally less than 15/20 minutes - it will go again.
I have a lot of claudication in my right arm/shoulder at times making that arm quite unusable, but this doesn't seem related to that as it happens in either hand or foot. Could it possibly be related to restriction of the blood flow because of the LVV?
I'm curious more than anything to see if anyone else gets it and if you have any explanation?
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Muscle cramps are quite common - Pred can deplete the magnesium in your body... have you tried good old fashion Epson salts - just put some in a bowl and soak hands and feet or a magnesium supplement but some cause stomach issues - hopefully someone who uses them will advise which ones are best, or a spray which may be better.
As for shoulder think I might want that checked especially of you think it might be related to LVV.
I used to have cramps well before GCA. I use a magnesium spray - from Boots or TkMax - since diagnosed and haven’t had any cramps at all. I also have a bath a couple of times a week with Epsom salts. I tend to buy any that have lavender, etc and claim to be sleep inducing.
Thank you, yes, have used Lavender oil in the bath for years, mainly because I love it, but will look for some epsom salts with it in - or formulate my own with the oil
Just realised my post sounded like I only have a bath a couple of times a week! My nightly bath as part of my prep for sleep routine is a joy and I vary what I put in it. I had many lovely well being gift sets for my birthday /Christmas which I’m still working through. I intersperse these with the Epsom salts.
Not unusual especially as we age. I have been taking 200 mg of Magnesium Bisglycinate at night for about a year now with good effect. The cramps are very unpleasant, aren't they ? Hope this helps.
Thanks - will look into the magnesium issue but it only seems to have come back with lower dose of Pred. Starting to take Pred originally stopped it in its tracks.
The claudication is definitely part of the Takashu's and rheumy is aware
Potassium is important, too, and also depleted by prednisone. Replacing salt with potassium chloride (brand NuSalt, and others) has been helpful for me.
I had similar cramps during the 5 years I had PMR without pred, They eased with higher pred - 10-15mg/day - but did return later, Mine have always resolved with magnesium but why they were worse with lower pred I don't know since pred can cause loss of magnesium through the kidneys.
Magnesium Citrate is supposed to be worst for stomach problems. I take a magnesium supplement from a well known mail order place. I have suffered cramps for years but when my neck and torso seized up I thought it was time to act. I take mine at night and I believe it helps with sleep.
I get it in my calves and feet when I swim or if I move my legs to certain angles when in bed, also in my forearms and hands if I stretch to reach behind me. Drives me nuts.
I'll try the magnesium. I've been resorting to the occasional G&T for the quinine. 😳
My niggles were not exactly like yours, but my hands and wrists became painful and weak after my course of prednisone ended. Not immediately, but about 3 weeks later.
They hurt and sometimes tingled and got numb. Sometimes it extended up my forearms. I wondered if I had carpal tunnel or ulnar tunnel syndrome. My MD ordered X-rays of my hands and wrists which were normal.
Time - and isometric exercises in the hot tub - has pretty much resolved this, though all of my muscles are weaker than they were before PMR (and I only had it for a year including treatment). I too get unusual cramps in places I never got cramps before. And one shoulder is threatening to become frozen.
The joys of aging? Or residual PMR?
BTW everyone feels good on steroids. Did you see how chipper ex-President Trump was when he left the hospital after getting COVID and being put on steroids? Never felt better! I was given a short course of prednisone for a congested ear (40-30-20-10 for 3 days each) and wow, no more niggles! But hard to go to sleep! And I usually sleep like a baby, till my sore hips decide there’s no position that’s comfortable except on my back and then I snore, waking my poor-sleeping husband who gets his best sleep in the early morning. Turned me into an early riser!
Hi. I too have funny sensation in right thumb. It just seems to move on it’s own! Then goes back. Also have noticed big toe, which is sometimes painful raised a bit and three toes next to it go numb! I don’t feel in control of my body since PMR and GCA, Regards.
You may be right in your thinking. I started on 15mg prednisalone and am now down to 7.5 and getting these cramps in hands that are almost like seizures that I have to manipulate back to life. I am reluctant to reduce the dose faster and I am not under pressure to do so. I was 86 when hit by PMR a year ago when in conversation with the doctor he warned that I could be on steroids at some dose maybe for the rest of my life. The medication has the extra drawback of the moon face and weight gain which I hate so I imagine that anyone younger would like to have the lowest dose possible without the lowest possible dose or none at all.
I have gotten cramps off and on for quite some time, before PMR and different after PMR. I used to get cramps in my calves, feet and toes, maybe due to running, but since PMR it's also thigh from knee to groin or hip, from groin to under my ribs in front or hip to under shoulder blade, essentially my large muscles. I also have gotten them in my neck and shoulders, arms, or hands and fingers. Sometimes because of a certain position and others for no reason. I started taking a potassium supplement which helped but I also now take a magnesium glycinate supplement, citrate gave me the loosey goosey's, which helps if you are constipated. Oh and also very helpful is making sure I get enough water. Hydration is VERY important even if you think you drink enough, it doesn't hurt to drink an extra glass or 2! Sometimes that's exactly what I need. Taking all the supplements won't help if your not hydrated. I get some tingling in my thumb and pointer finger occasionally but so far not enough to complain about. Not sure if hydration has anything to do with it? I have also tried the magnesium cream on Amazon, Seven Minerals. It works for isolated cramping in hands, fingers, feet or toes but an Epsom salt soak is better especially for the large muscles. Hope this helps.
I started getting cramp before PMR was diagnosed and it hasn't really stopped since. It's usually when I've been standing for a while and then try to drive. It always seemed to kick off after I'd been photographing a long music gig or festival on the drive home. There were several times coming down the M40 that I was absolutely howling in pain and trying to find somewhere to get off!
Since then, it seems to be if I've been standing for a while or walking slowly - once again, it's when I get back in the car to drive home. I'd heard about magnesium supplements being recommended but my partner tried taking some (that he got from Amazon) for his dupuytren's and they really upset his stomach so I never tried! Could someone please recommend something reliable?
Most of them are reliable enough but you have to work out how much your gut will tolerate, don't take so much or so often that it causes the runs. Sprays or adding Epsom salts to the bath or a footbath also usually works well.
Magnesium wouldn't help Dupuytren's as that is the fascia that is tightened rather than the muscles fibres themselves. The fascia is the fibrous layer of tissue that lies underneath the skin and above the tendons, nerves, blood vessels, and bones in the palm and fingers.
"How much my gut will tolerate" is what concerns me. I don't have IBD, but I do have some 'triggers' - I can't eat oily or fatty foods without getting the trots and, as is common at my age, I do have some diverticulitis. My younger brother has it more seriously - he can be incapacitated for days and needs antibiotics, whereas I just spend all day in the loo if I eat fat / wheatgerm / granary items - which is a shame, because I used to like wholemeal but nowadays my gut can't take it.
Also interesting comments about dupuytren's: his case is slightly different. Although it has recently been diagnosed in one hand, he is one of the very rare cases where he has it in his foot (I seem to remember that there are only 15 cases. He's had it all the time I've known him (14 years), and think he'd had it for at least 10 years before that. He had 3 operations, all of which failed as the contracture comes back, but it has also left him with a nodule in the instep. He's already decided not to have the operation on his hand unless the condition becomes very severe.
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