Cramps with GCA?

[Happyexplorer]

Apologies if this is in FAQs, I did search but got tangled in IVF threads!

I have been troubled by foot and leg cramps alot since GCA diagnosis, helped by wearing thick bedsocks, even in tropics! Also while on high doses of pred, my hands would go into cramped claws when doing even simple exercise, like chopping a carrot. That improved as Prednisone reduced GCA symptoms. Am now on 9.5mg which seemed OK for first 2 weeks, but this week, on hols in Greece my left hand has had a couple of bouts of going into spasm, thumb clamps across my palm and hand is paralysed. A bit scary and am wondering if I should go back to 10mg or persevere with 9.5mg, very slow going with tapering, despite weekly Actemra? Any advice?

Anyone else troubled by cramps? I take magnesium 1000mg at night and a multivit in the morning, as well as the Prednisone.

Thanks in anticipation 😊

[Dochaz]

I get cramps in my right forearm, both hands (but more often the right one) and occasionally my right foot since I started Prednisone 3 months ago now for GCA/PMR. Started on 40 mg, then 35, now 30 and due to reduce to 25 next week if my blood work is ok. The cramps aren't particularly painful and only last a minute or so. It happens maybe twice a week, usually when I'm chopping veg! I'm pretty sure it's Pred related as it's something I never experienced before. Hope this helps.

[Happyexplorer in reply to Dochaz]

Thanks, yes that is a help, agree it doesn't last long. I assumed it was GCA rated claudication and was a bit scared in case I ended up not being able to use my hands much! Always feels better if others have the same issues!Thanks again

[Charlie1boy]

I’ve experienced cramps in my fingers/thumbs for years now. Usually it’s been brought on when painting or decorating, and sometimes when bellringing.It started long before I was diagnosed with pmr, and has nothing at all to do with taking prednisolone. It has got neither better nor worse recently.

Not sure if this helps.

Paddy

[Happyexplorer in reply to Charlie1boy]

Thanks Paddy, I never got the problem before, but might just be part if ageing, with the blood flow less efficient🤔😊

[PMRpro Ambassador]

It isn't just magnesium that can be the culprit - it is just the one that is safe and easy to remedy for a start. but taking too much as supplements is still not recommended. Too much zinc is also a problem.

Maybe it is worth asking your GP to do some blood checks on calcium and potassium which can both also affect cramps.

[Happyexplorer in reply to PMRpro]

Thanks, appreciate the suggestion, you are always so wonderfully quick with your help! Actually did get bloods a couple of weeks ago and potassium and calcium were within normal levels.I'll stick to 9.5mg pred and see how I go.

Thanks again 😊

[Dochaz in reply to PMRpro]

Is the issue too much or too little calcium and potassium? I've been prescribed both as supplements along with vitamin D.

[PMRpro Ambassador in reply to Dochaz]

Can be either - different symptoms usually though.

Potassium supplements? That is very unusual, had they checked your potassium levels first? And are they going to check them regularly if you are on a supplement? Are you also on diuretics?

Calcium and vit D supplements are usual - it was found in a study that it seemed to protect from loss of bone density when patients were on corticosteroids.

[Dochaz in reply to PMRpro]

No diuretics. Last blood work shows potassium levels normal. Everything elso too apart from raised ESR (19, going down since the previous time).

[PMRpro Ambassador in reply to Dochaz]

Wonder why potassium supplements then - I'd want to know

[Dochaz in reply to PMRpro]

My doctor said it could be an issue with long term Pred use. It's a precaution, I suppose. No apparent ill effects so far. Do you think the cramping might be related?

[PMRpro Ambassador in reply to Dochaz]

It can - but I haven't come across many with it in well over 12 years on the forums and far more PMR patients than he's had hot dinners! That isn't the way to deal with it - monitoring blood tests every 3 months is rather better than "just in case" drugs and covers the development of steroid-induced diabetes too as well as other factors!

[Seacat30]

I had bad leg cramps with early PMR and higher doses of steroids. I hardly ever have them a year on and on lower doses.

Isn't that rather a high dose of magnesium? Has your doctor recommended it.

[Happyexplorer in reply to Seacat30]

Thanks Seacat, You might be right, also I didnt bring the original container with me so I may be wrong re dose🤔I any case,GP recommended so have been taking for 10 mths. Will try half for a while..... may be nothing to do with Pred 🤣

[Seacat30 in reply to Happyexplorer]

How about asking whether there is a gentle exercise that might reduce your particular type of cramps?

[SnazzyD]

I got that occasionally and broke the low carb diet and had a banana daily for a few days for potassium. I took 250mg. Is your high dose for a reason? Would also talk to your doctor.

[Seacat30 in reply to SnazzyD]

I eat a banana a day too and there is 27% of the RDA of magnesium already in my multivitamin.

[Happyexplorer in reply to Seacat30]

Good idea re the banana Seacat- re exercise, I do quite a bit each day, these hand spasms are a new thing...but exercising fingers may well help, thanks again!

[Happyexplorer in reply to SnazzyD]

Thanks yes, will drop her an email with an update...I'm away from home currently. A daily banana sounds a good idea, much better to eat one's vitamins! Also I just checked the dose online, finding the Swisse packaging and it's only 150mg per tab, so 1000mg was a crazy guess, sorry about that! I'll just persevere with 9.5mg pred and see how I go.Thanks for the good advice!

[PMRpro Ambassador in reply to Happyexplorer]

Up it a bit then - it is difficult to overdose as it usually has a laxative effect in larger quantities.

[Happyexplorer in reply to PMRpro]

Thanks PMRpro

[m33ary]

It might be worth getting your Vit D checked. I had cramps and my vitamin D was very low. I don’t get them now and take one a day. ❤️

[Viv54]

Hi , i suffered from terrible cramps in my legs , tendons and fingers , Steroids can play a big part in this , i have done a lot of research and for me it was the pred that caused it ! It played havoc with my tendons . In some cases it would suddenly start when i was walking, had to limp to a bench until it passed ! Two of the fingers on my left hand are damaged , they dont stay together anymore . It is a really painful feeling. It did get better as i reduced my pred , i googled the side affects i was amazed , i have it very slightly now and again but will never forget the acute pain i was in. Tried loads of products etc, they helped in some cases , but for me it was the lower dose that helped. Good Luck. Best wishes Viv🌷

[Happyexplorer in reply to Viv54]

Thanks so much for this Viv, though I'm sorry to hear of your experience! That's exactly what was happening with me, my little and ring finger would clamp together like claws. Same with feet as I pointed my toe to put a shoe on. It did improve alot as I dropped the prednisone dose but started again this week in my left hand...it does go off quite quickly with rubbing and forcing the hand open, and I think not as much pain as you seem to have had. (I've gone back up to 10mg actually as extra stress when travelling plus Greek heat🥵)It's always such a comfort to find a fellow sufferer tho, so thanks for replying, we'll be back to normal one day I'm sure and luckier than many others no doubt😉😊

[Viv54]

Your welcome, yes it's good to know your not alone, and yes we could be worse, but feels awful at the time .Here to a less painful future 😊

[Happyexplorer]

👍Yes indeed.......and I'll be glad when my fat face and neck return to normal too🤨🤣

[catdance]

Hi Happyexplorer! I have experienced cramping as well. I used to get cramps in my feet & toes well before being diagnosed with PMR. The cramping has continued but has also reared it's ugly head in new places. From inside of knee to groin, in the back on either side from hip to under shoulder blade. Hands and fingers. Calves. So a variety of places. Some last only a few minutes, others an excruciating amount of time that seemed forever. Some would wake me up in the middle of sleeping or keep me from going back to sleep. I asked the wonderful people here about it and it was suggested that it might be due to low magnesium or potasium due to the higher dose of pred zapping it out of you. (I was at 4 mg and had a relapse due to the vaccine and I suspect being on too low a dose to manage the inflammation. I upped my dose, to my Dr dismay, to 15 mg.) I started taking a supplement with magnesium, 400 mg, zinc, 25 mg, calcium, 1000mg and vitD3, 15mcg. (I was also told to reduce the amount of calcium and vit D3 so this seemed a good alternative.)This seemed to have helped but I also discovered something else that also makes sense as I remembered from having the cramping prior to PMR. One is drink more water, even drinking one glass, not guzzle, helped almost immediately. Also, with my feet & toes, I find that keeping them warm, even in the summer, wearing slippers while walking around kept them from cramping. Also, stretches were helpful, especially for the hands and larger muscles. I also discovered that drinking a glass of water, not ice cold either, as my first beverage or even in between my morning coffee has also helped tremendously with the brain fog. I'm still getting cramps but so far, knock on wood, no major muscle groups and they only last for a few minutes. Much more tolerable. I have an appointment with my rheunetologist tomorrow and will suggest getting a blood test that covers those concerns as well as the inflammation in regard to tapering, which she seems to be in a hurry to do. Sorry for the delay, time zone US.

[Happyexplorer in reply to catdance]

Thanks Catdance....that makes alot of sense too. I do drink lots of water usually but Greece is so hot, may well be contributing factor.Appreciate hearing from you🙏😊

[67Blue in reply to Happyexplorer]

I experienced terrible spasms when on higher doses of pred (started at 40 mgs,) couldn't hold a book or newspaper as soon as I did my thumb and fingers clamped the item, and stuck it to my palm, my toes did allsorts of painful things especially in bed. I tried asking about supplements , but my Dr, Rhumy and the local pharmacist said no, just get off the pred. My Dr referred to as " Did have PMR/ GCA when I got to 7 mgs. LIke as if it had magically gone. However now at 3 mgs and with a daily banana and researching natural foods I no longer get the cramps ---spasms as my Dr used to call them. Whatever I have he says it is caused by pred. end of story.However my numb foot seems to be another story, still feel as if I'm walking on a thick sanitary towel for want of a better description. Had a MRI scan which eliminated a trapped nerve, but showed bulging disks, so I guess as I reduce I will feel the full wrath of that. not just dull aches. I will try upping my water intake, but then I spend half the night visiting the loo. I still do silly shallow breathing as I call it and get the shakes but no one listen to that. Stress related possibly.

[Happyexplorer in reply to 67Blue]

Thanks 67Blue, good to hear your experience and it definitely seems we can blame the prednisone. Will certainly note extra potassium, water and magnesium tho!Hope you feel better soon!

[catdance]

I'm certain the suplements, potassium too, have helped as well. One more thing, I've been drinking at least one glass of water with a whole lemon squeezed with pulp, rind and all in the water. Hope this helps and you feel better soon!

[Happyexplorer in reply to catdance]

Good idea! Thanks😊