update to severe leg cramps and resul... - British Heart Fou...

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update to severe leg cramps and result of stopping Spironolactone

Ktomoph_ profile image
4 Replies

I was suffering severe and excruciatingly painful full leg cramps in the night - mostly in the left leg but sometimes both legs. I would also sometimes suffer spasms of them during the day.

I researched in depth the possible causes, with the obvious ones being not drinking enough fluids throughout the day, too much salt in the diet and other dietary related suggestions. But as I drink plenty of water throughout the day, have a diet that is specifically low in salt, and have a balanced and healthy diet, nothing indicated that it was caused by this part of my life.

My daily exercise routine is fairly good, my bed is raised at the head - initially to help with breathing - but I also read that it may help with cramps. I then began to suffer other body cramps - stomach, right of torso, and then arm and hand cramps.

I then researched in depth the side effects of each of the medications that I have been prescribed for heart failure. Each of the cramps I was suffering were listed under Spironolactone!

I contacted my GP and explained what was happening and the relation to Spironolactone..........

After this call to GP - note to self :- contact pharmacist and cardiologist for an in depth and concerned response, and subject related advice!

Spironolactone is a 'potassium sparing diuretic' - whereas the other 2 that I take flush everything out, spironolactone retains the potassium.

Perhaps it was my healthy diet that affected the way spironolactone worked......perhaps I ended up with too much or too little potassium being retained(although my blood tests at the time did not pick this up......

I also have CKD - caused by the medications I am on(!). The related issues and side effects of spironolactone warn that 'too little potassium in the body can cause HYPOkalemia = muscles feel weak, cramps, twitching and even paralysis'. Or 'too much potassium in the body can cause HYPERkalemia = muscles feel weak, cramps, feeling sick, trouble breathing'. The kidneys have to deal with the majority of this. So, regular blood tests are needed to keep an eye on the potassium levels....... however this doesnt happen....

With all of my medical conditions listed clearly on my records; with all of my medication listed clearly on my records; I clearly expressed everything I was suffering; and therefore 'warning signs' needing to be acknowledged by a primary healthcare practitioner, it was a bit hard to accept the immediate and dismissive response - 'getting cramps is an age thing.'

The good news for me is - It has now been over 6 weeks since I decided to stop taking Spironolactone, to check whether this was causing the severe full leg cramps each night and the body cramps throughout the day.......

I am so happy to shout out - SUCCESS! I have not suffered any severe or even mild cramps since I stopped taking Spironolactone.(touch wood!)

Of course, I am keeping an eye on whether I am retaining body fluid as Spironolactone is a diuretic, but as I take a further 2 diuretics I have not noticed any extra fluid retention.

I think the message is that 'one size does not fit all' and we do need to question and research the medication each of us are prescribed.

wishing you all a healthy and pain free life.......❤️

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Ktomoph_
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4 Replies

Hello kromoph,Thank you for a very interesting post.

Like yourself and many others I am on spironolactone as well. Like yourself I suffered from leg cramps., {not as bad as yours sounded} But I was not willing to stop the drug because of it use to help reshape my heart.

I found that I was taking to little salt , that came as a shock to me! Most cramp remedies {over the counter} have a salt base, again unknown to me.

I don’t cook with salt and have never added it afterwards to meals, preferring always fresh ground pepper, just a pure taste thing and not for health gains.

I didn’t see what your dosage of spironolactone was, I am only on 12.5mg and was told that although that dose was beneficial for the heart shaping part { sure it’s not called that } it was not strong enough as a water tablet hence being on the dreaded furosemide at 40mg and the constant trips to the toilet.

Well done in getting to the bottom of your problem and so sorry that you had to turn both medical and information detective to get it.

But your found information is most interesting.

Keep being well

Ktomoph_ profile image
Ktomoph_ in reply to

Hi Blue1958 - thanks for your response.

You are right about some people having too little salt in their body. Whilst researching the cramps cause to start with, I did wonder about this as I was at one point taking 80mg Furosemide and 50mg Losartan. I cut the Furosemide a couple of years ago to 40mg and when the cramps started I cut to 20mg.

I started topping up my electrolytes after realising that the diuretics were just flushing everything out, but the blood test I requested(!) showed there wasnt an imbalance and everything was 'normal'.

My heart issues have been an interesting journey into the medical and chemical side of life, having avoided both for the vast majority of my life.

I had the luck of being quite healthy and any ailment was treated with natural remedies or as a last resort, one paracetamol!....this stemming from fear of hospitals(confinement) and needles!

Discovering there was an issue with my heart (genetic )was a steep and fairly traumatic learning curve. It also highlighted that my body did react badly to certain medication (chemicals).

The medication was finally sorted out and all seemed OK.

25mg spironolactone was eventually added to my meds.

As I did with all the other meds, I wanted to know what it would do and how. The following is a copy of the simple version -

Renin is an enzyme that helps control your blood pressure. The enzyme is made by special cells in your kidneys.

When your blood pressure drops too low or your body doesnt have enough salt, Renin gets sent into your bloodstream.

This triggers a chain reaction that creates a hormone called Angiotensin which signals your adrenal glands to release another hormone called Aldosterone.

Angiotensin makes tiny blood vessels narrower whilst Aldosterone tells your kidneys to hold on to salt and fluid.

Both of these things can raise your blood pressure.

If this gets too out of balance your blood pressure can get too high.

Spironolactone actively opposes Aldosterone. It acts as a binding agent at the Aldosterone receptor site which will then allow more water and sodium to be excreted but conserves potassium.

So, in basic terms Spironolactone helps the heart by blocking the hormone Aldosterone which builds up salt and fluid retention in the body.

Spironolactone is a steroid. It blocks the effects of the hormones Aldosterone and Testosterone but has some oestrogen-like effects - hence the possible side effect warning of breast increase in men.

But this information does make one wonder what else this is doing to our bodies.

I have always had low blood pressure - not too low to ever cause concern though.

So my question has always been - why was I prescribed Spironolactone?(and by a HF nurse who couldnt give me an explanation other than 'because its good for your heart')

....I am currently researching the alternatives...............and again I think the message is that 'one size does not fit all' and we do need to question and research the medication each of us are prescribed.

wishing you all a happy, healthy and pain free life.......❤️

in reply to Ktomoph_

Thank you for an extremely knowledgable post, it has certainly made me think about some if not all of my medication and how it works within my body.Take care

Marshmallowsnow profile image
Marshmallowsnow

I don’t take spironolactone but I empathise with you regarding reporting your cramps etc to your GP. The response you received was not reassuring for you or informative. i.e. cramp is part of getting old! … That’s that then ? This s just not good enough. Anyway Ktomoph hope you stay well and cramp free👍

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