When a 'side effect' is a BIG 'effect' ... more o... - PMRGCAuk

PMRGCAuk

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When a 'side effect' is a BIG 'effect' ... more on tendons

Rimmy
Rimmy

Hello All

I apologise in advance if this just sounds like a great big 'whinge' but I am feeling a wee bit fed up !

I wrote a post here recently about straining an Achilles tendon - and that (possibly) being a consequence of long term use of Prednisone. I know this can happen for other reasons but there is sufficient evidence that tendons can become more susceptible with extended corticosteroid use. OK I accept that and would certainly prioritise my eyesight over anything else (almost) anyway. It is however annoying that I also had to increase my dose in relation to a GCA 'flare' at about the same time this first happened - so I am still back up at 25mg - and was only at about 15mg when this new problem emerged.

From the comments of others here and what I have so far deduced from elsewhere this could be a long term and somewhat intractable problem in itself as not exercising can make things worse and doing exercise - even carefully controlled forms - can still be problematic in terms of the healing process and or triggering 'new' damage. I have been managing reasonably well although I have had to reduce my walking a lot and make myself rest more - BUT I am having a nasty problem with cramping pain in my calf which wakes me at night and very early in the morning.

It makes me laugh to read some people have CORTISONE injections to assist with this - although it is interesting my pain level is at its highest when my Pred level is likely at its lowest. This cramping is horrid - just like waking to one of those calf cramps we have all had at some point but which doesn't abate often for hours and obviously apart from painkillers like panadol or codeine - which have limited effect anyway and lots of heat bags - I can't think of anything else I can do. I have a reasonably good physio who is trying to introduce some tiny exercises - but they seemed to make things much worse after only the most cautious undertaking !!

I tried some magnesium as I thought my electrolytes might be a little askew but that only resulted in several awful hours of what ended up being like prep for a colonoscopy - so NOT doing that again any time soon !!

Anyway I would be very appreciative of ideas, experiences or insights others might have with this 'side effect' which to date (after about 18 months on moderate-high Pred doses) has been the only serious one I appear to have had - so I guess i should consider myself 'lucky' - even if I am fed up !!

Best wishes to you all and thanks for 'listening' !!

Rimmy

32 Replies
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Is the calf pain like a cramp? Maybe you need more magnesium. Try Epsom salts baths or footbaths as apparently it's readily absorbed through the skin. Pred can upset our electrolyte balance and magnesium is one of our electrolytes. Also, if we're taking extra calcium the balance between the two can get out of kilter.

Rimmy
Rimmy in reply to HeronNS

Hi HeronNS yes very like a typical calf cramp and as I mentioned I tried some magnesium - but will use the bath trick instead next time as ingesting it was a disaster for me !! I am pretty sure the cramping is related to my damaged tendon though - I just wish it wasn't at its worst in the middle of the night !

Thanks

Rimmy

MaryA_
MaryA_ in reply to Rimmy

I have them too! They are awful, then the next day I’m really tired from lack of sleep. They are also worst if I’ve had a busier day then usual and not drank enough water. Also I too do the magnesium. It’s all so baffling! Where’s the end to it all? ! !!

Rimmy
Rimmy in reply to MaryA_

I am sorry to hear that MaryA - I know what it's like. I am just hoping one day all the 'bad stuff' will evaporate at once - and maybe we will all get 'lucky' ?

I do drink a lot of water and coffee and I know you can overdo it and feel quite tacky if your electrolytes are 'out' but in this case I do feel it's stemming most likely from my inflamed Achilles - although it could be a mixture of both - but as you say goodness knows what else and 'where IS - the end to it ...'!? (LOL - or trying to)

HeronNS
HeronNS in reply to Rimmy

My lower leg pains (in shins not calves) went away after I started consuming more salt.

MaryA_
MaryA_ in reply to HeronNS

That’s interesting, HeronNS, because I don’t consume a lot of salt either. Never have.

TooSore
TooSore in reply to HeronNS

What's the timing on taking magnesium? With the prednisone or later in the day with the calcium? I too have muscle aches that seem more related to needing magnesium than PMR and am not sure what I can take when anymore...

HeronNS
HeronNS in reply to TooSore

I would avoid taking it with prednisone. And it is usually advised not to take additional magnesium at the same time as calcium, unless all along you've been taking a balanced formula pill. The problem is that excess calcium will interfere with the absorption of the magnesium. I tend not to take magnesium capsules for this reason, but when I do I skip my bedtime calcium and take magnesium instead. Depending on your daily routine you may find a time at least two hours away from a calcium dose, say teatime or morning coffee break, when you can take the magnesium. A lot of people can't really tolerate much oral magnesium, gives them the runs, so you won't want to be taking much anyway. Magnesium is to plants, apparently, what iron is to animals. So it's available in good quantities in a lot of the foods we eat. I enjoy an Epsom salts bath about once every week or two, instead of magnesium capsules. Easier and pleasant. A foot bath works for those who prefer to shower.

TooSore
TooSore in reply to HeronNS

Thank you

Good evening Rimmy. Poor you ! What an unpleasant symptom. No wonder you are fed up, night cramps are awful, probably made worse by your efforts to save your ankle. You seem to be doing all the right things, stretches, physio, heat pads. Bananas are a great source of calcium, magnesium and potassium, so perhaps a few smoothies would’t Go amiss. I wondered if gentle water aerobics would also be useful. Hope it passes, like all these plagues of Egypt. X

Rimmy
Rimmy in reply to SheffieldJane

Thanks SJ - great analogy - the 'plagues' ha ha !! - and yes maybe a smoothie or three (love those) - 'food' is often the best fall-back for me when all else fails !

XX

Try tonic water but don't overdo it. On my recent holiday I did overdo it as the steward kept filling the mini bar up and I ended up with a sore tummy.

My husbands cramps seem to have gone since drinking tonic water so good luck

If the magnesium supplement ( I’m presuming a tablet?) is causing an upset stomach try a magnesium spray directly onto the effected cramp area. I had an Achilles problem prior to developing PMR which has returned to niggle me and I sometimes get cramp after teaching a dance class. The spray has helped this considerably. I bought one for sensitive skin from Hollamd and Barrett for around £12. It’s worth a shot.

Rimmy
Rimmy in reply to peace_lover

Thanks peace lover - that hadn't occurred to me - I will give it a try along with having baths with it. It must be difficult having Achilles problems as a dance teacher - but perhaps also a bit of an 'occupational hazard - while I didn't even get the fun of the dance !!

Best wishes

Rimmy

Hi Rimmy

I have been on pred for well over 4 years and have complications with lower back. I must reinforce Peacelover's comment about the magnesium spray from Holland and Barrett. I use this on my back and find it beneficial, as the magnesium is absorbed through the skin. When my spray ran out, I replaced it with the same in gel form. I use it twice a day and it is lasting a very long time. Well worth a try.

Rimmy
Rimmy in reply to Jen47

Thanks Jen47 - for another suggestion for an obviously useful product - I hadn't heard of anything like that in gel form here in OZ so I will seek it out or something similar at the pharmacy - much appreciated !

Rimmy

Hidden
Hidden

Ohhhhh Rimmy, I was hoping that Achilles tendon had calmed down... apparently it has not! Damn! I unfortunately have no advice or suggestions for you but do hope others come to the rescue!!! In the interim, I will will put it out into the Universe that you be freed from pain and suffering! xxxx

Rimmy
Rimmy in reply to Hidden

Thanks Melissa - your thoughtful 'incantations' and kind wishes will go a long way to fixing this hassle for me I'm sure !! - Just having such generous and thoughtful responses makes all the difference when we are feeling a bit peeved or irritated. I knew you'd understand my gripe - you've had to tolerate some pretty horrid 'side' stuff yourself I know - but hopefully things are improving in any way they might be for you at present !

Rimmy

XX

Hidden
Hidden in reply to Rimmy

I am lighting a candle (from The Church of Les Saintes Maries de la Mer in Avignon) for you as as we speak...

“The Sage's Wish: Like Sun, from the East, may you continue to rise, smile and shine.”

~ Ogwo David Emenike

Thank you so much !!! what an 'auspicious' sounding candle - merci beaucoup !!

XXXX

Oh Rimmy that sounds awful. I was going to suggest bananas but see that Sheffield Jane already has. Keep your chin up you can do it. ❤️

My GP prescribed me quinine surface. Quite brilliant for cramps, my mother swore by it. I just take it when I get cramp, as I think they are frowning on taking quinine nowadays. Cramps run in the family, my grandmother on my father’s side used to keep a half tomato by the bed and cover it in salt if she got cramp and my grandfather on my mother’s side used to have a marble slab he would stand on. A cold stone floor works as well apparently.

I suffered from cramps to in my calf , instep and thigh.

I found massaging in Voltarol gel helped a bit. I drink a lot of Indian tonic water as it has quinine in it and a small glass of tomato juice. Mineral supplements in my opinion can often upset the gut ( iron, zinc and vitamin C tablets), so I tend to be suspicious of them

Thanks Sallyaches I appreciate your comments.

PMRpro
PMRproAmbassador

Try just half the dose of magnesium! Or use an Epsom salts foot bath.

Have you asked your doctor to check your electrolytes? It isn't just magnesium that causes it.

Thanks PMRpro will try a smaller magnesium dose and have been using Epsom salts.

I saw another ('senior') GP yesterday while my own sympathetic doc is away and it was a terrible experience. He basically told me nobody could do anything for cramps, and that I 'read too much', I was 'too preoccupied' with my (GCA/PMR) condition - which I had to point out to him for obvious contextual reasons - and that I should get off Pred asap. He also told me without ever having a TA biopsy there was 'no real evidence' I (ever) had GCA despite all the symptoms I told him about. It was quite a shock to be treated so rudely by another doctor given the one I usually see is so helpful and supportive. Because I have had much less sleep recently with hours of night time cramps I was almost in tears when I left without anything useful at all - even just some words of slight encouragement.

So I am looking forward to my usual doctor returning - he can check my electrolytes and perhaps he might even give me a temporary painkiller for the dreadfully sore muscles I have in my leg following these extended cramps. Some docs don't seem to have ever taken in the notion of 'do no (extra) harm ...'

Rimmy

PMRpro
PMRproAmbassador in reply to Rimmy

Complain to the practice manager - that is totally not acceptable and he is wrong on a few points to boot. He is quite correct that there is no concrete evidence without a TAB - but the diagnosis of GCA is a clinical one, i.e. made on symptoms and history plus the response to pred.

This concept on the part of some doctors that patients become "too preoccupied" with their illness is really getting my goat. If THEY were more helpful/proactive WE wouldn't have to be. It is the fear of the expert patient though - a study showed that in some cases the patients who had undergone expert patient education were ignored in exactly the situations the training is aimed at. And don't let me get started on "get off pred asap" ...

Rimmy
Rimmy in reply to PMRpro

Yes I was tempted to complain but given I like my regular doc at this surgery I'll just ensure I don't get that 'drip' again. His whole manner was quite inappropriate, even sexist, very dismissive and I almost laughed when he told me he knows 'best' with his decades of experience - as it just seemed to me he hadn't even learned the basics of good Dr/patient communication - like listening and having some (even pretense at) 'empathy'. I knew you'd feel as outraged as me because neither of us would ever want that kind of treatment for not only ourselves but for anybody !! Thanks for the 'shoulder' PMRpro !!

XX

PMRpro
PMRproAmbassador in reply to Rimmy

I'd complain just for the benefit of others who WILL leave in tears having been failed comprehensively. He could kill with that attitude.

Rimmy
Rimmy in reply to PMRpro

Quite right of course !!

PMRpro
PMRproAmbassador in reply to Rimmy

This might be interesting too

healthunlocked.com/lupusuk/...

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