On 60 mgs, potassium low, magnesium low, cramps, dizzy, fatigue ,the runs etc...

[Fatsiajaponica]

Due to reduce to 40mgs tomorrow but really feeling very strange, balance off, BP low for me, I'm on 2 x meds for BP which are contraindicated with steroids as should increase BP?? The symptoms are consistent with low potassium levels (call from hospital to tell me that) but worsening. Eating everything I can to help the situation, heathiest diet I've ever had, lowish carbs as well. Anyone else had all this on high steroid dose?

[DorsetLady PMRGCAuk volunteer]

hmm… that sounds pretty miserable for you.. are you sure you aren’t dehydrated - especially if you were affected by hot spell last week.

I’d be inclined to stick at 40mg for a few more days… don’t really want to add anything else into the mix right now.

What BP meds are you on?

PS. Agree with PMRpro re medical advice…

[Fatsiajaponica in reply to DorsetLady]

Olmesartan and Felodapine

[DorsetLady PMRGCAuk volunteer in reply to Fatsiajaponica]

If anything Pred is likely to make them work less well - so would expect BP to run slightly higher - not be lower.

[PMRpro Ambassador]

Have they not done anything to rectify the low potassium? Feeling that bad I'd be calling 111, telling them what you have told us and asking medical advice. Please do that now - better once too often than once not enough.

[Fatsiajaponica in reply to PMRpro]

Just said eat a banana so didn't think it was anything to worry too much about. Should have asked for the levels but taken by surprise by a late call

[PMRpro Ambassador in reply to Fatsiajaponica]

It's the fact you are feeling worse - just a banana may not be enough. One of those drugs may increase blood potassium but the other than make it low. The pred can potentiate the lowering potassium effect so you need more interest shown I think.

[Fatsiajaponica in reply to PMRpro]

Thank you, lovely that you both came back so quickly, much appreciated. x

[Sharitone in reply to Fatsiajaponica]

When my potassium is low, the surgery says eat 1 or even 2 bananas every day - quite a punishment. Recently I have kept the potassium level respectable, but continue to eat a banana every other day. Of course, there are other potassium-rich foods if you can't face the bananas.

[Fatsiajaponica in reply to Sharitone]

Fortunately love bananas but not good for the attempt at low carbs. Avocados are another source and I love those too, lots of other good things in them. Almonds, peanuts and cooked broccoli, I've been going all out!

[PMRpro Ambassador in reply to Fatsiajaponica]

A really good source is the lo salt substitutes - they are half sodium chloride and half potassium chloride!

[Fatsiajaponica in reply to PMRpro]

lo salt substitutes of what? I know that you are the pred diet queen but more info needed.😂

[PMRpro Ambassador in reply to Fatsiajaponica]

The salt substitutes they recommend to get your sodium intake down

uk.losalt.com/

[Fatsiajaponica in reply to PMRpro]

I'd never heard of it, thank you, it's a whole new world this healthy eating thing, I'll add some now on my on line shop due tomorrow.

[PMRpro Ambassador in reply to Fatsiajaponica]

Really? Been around for ages. I don't use salt at all so don't need it but it has its uses.

[Freya32 in reply to Fatsiajaponica]

Celtic salt...

Try red grapes, pomegranate, etc and foods rich in potassium.

I take magnesium citrate for cramp along with other vits and mins that I have taken for years.

Cottage cheese is good low carb . Yet plenty calcium.....add chives for flavouring.

My weight went to 77 kilos on preds but down to 62 now. only another two stone to lose.

No appetite now....lovely.

Hoping you will soon feel better.

[PMRpro Ambassador in reply to Freya32]

Salt is sodium chloride - whether it still has impurities or not. Table salt is no different from the rest - just fewer impurities.

And Barbara O'Neil has an extremely disputed reputation. She has been banned from practising as an alternative health practioner for claims she has made about cancer amongst other conditions:

"An unregistered practitioner, she had no health-related degree, diploma, or membership in an accredited health organization. She had been providing services as a naturopath, nutritionist, and health educator beyond the limits of her training and expertise and posed a risk to the health and safety of the public making dubious and dangerous health claims regarding cancer, infant nutrition, antibiotics, and vaccinations. ... She has claimed, without evidence, that a doctor had a 90% success rate in curing cancer with sodium bicarbonate injections."

sciencebasedmedicine.org/au...

[Fatsiajaponica in reply to PMRpro]

Hi PMRpro, gave up on the GP and sourced some potassium and magnesium supplements as no better today. They will take time to work but fed up waiting for GP who is now calling tomorrow, 3 days after request. Moorfields sent me the potassium result, it wasn't so bad on 2nd August, 3.3, just below normal but the subsequent 60mgs of pred seem to have made the situation as it is.

[Sharitone in reply to Fatsiajaponica]

Bananas are not so bad for sugar before they are really yellow - but that's also when they are lower in fibre.

[piglette]

Neither Olmesartan or Felodapine are contra indicated with steroids, although they may not work quite so well in reducing blood pressure as if you were not taking the steroids. Both heart drugs do have side effects which may be causing some of your problems. I was not really sure exactly what problems you had though.

[PMRpro Ambassador in reply to piglette]

Not contraindicated no - but increased monitoring is recommended with felodipine.

[Grammy80]

I was wondering if you were on a diuretic? I know that can reek havoc with potassium levels , cause cramping, My personal experience, all I have to draw on, was that needed to be adjusted at certain times. I cannot say what caused it in my case....but a thought.💞

[Fatsiajaponica in reply to Grammy80]

Hi Grammy, no diuretics ACE inhibitor and something else? I am on it now and will insist on better care given that high steroid prescribing seems to mess with so many other things.

[Sophiestree]

I don't think that is good enough to just ring you and say that with no follow up. Do you have a good GP?

You have certainly been through it for lots of reasons but I feel you need someone really listening to you and looking at all these results with low BP on top.

[Fatsiajaponica in reply to Sophiestree]

I know!! Seeing a GP here atm is almost impossible so have to go for out of hours. I'm back at Moorfields eye hospital on 12th but will get to a GP before then hopefully.

[SusannahMM]

Hi, I haven't posted here before - a bit shy to say the least.What are your potassium levels? "A bit low" could mean anything. And when are they testing your potassium again?

[DorsetLady PMRGCAuk volunteer in reply to SusannahMM]

Never be shy.., we don’t bite! 😊.. and welcome.

[Fatsiajaponica in reply to SusannahMM]

Hi Susannah, thank you for replying. Hopefully tested again on 12th but am working on seeing someone before then. Yes, welcome, hope you are doing ok?

[SusannahMM in reply to Fatsiajaponica]

Just FYI, anything lower than 3mmol/L should be taken seriously. If that's the case, don't bother with the GP and go direct to 111 . If the GP has just told you "a bit low" it's worth asking them for the actual result just for reassurance. (I haven't got any medical training, but I had a lot of experience with my mum , who was chronically hypokalemik).

[Fatsiajaponica in reply to SusannahMM]

Thanks Susannah, it was Moorfields Eye hospital who rang with that information, GP not involved. I think you are right, I'll call the nurses there and ask for the result. How did they help your mum, supplements? I daren't do anything in case it's something else entirely causing the symptoms, just discovered that the exact same symptoms come from od calcium, I'm on the chewable tablets and some of the meds I'm on can boost the calcium. It's an absolute puzzle but someone needs to help sort me out! It helps being on here, no-one else would get this I don't think.

[SusannahMM in reply to Fatsiajaponica]

Mum was on liquid potassium supplement available by prescription only. Like you say, how you're feeling could be down to a number of things - so many variables!

Hope you feel better soon

[Fatsiajaponica in reply to SusannahMM]

Thanks Susannah, called Moorfields, can't give me the potassium result, need to call pathology in the morning. Feeling much better this evening, maybe down to reduction of pred to 40 from 60.

[SusannahMM in reply to Fatsiajaponica]

Oh, yes, that might well have something to do with it. Hope you keep improving 🤞

[suzy1959]

I was happily on Indapamide for BP but then got a call from the GP that my potassium had gone too low so I needed to come to off it. Potassium ok now. Indapamide is one of the BP meds that is a dieuretic. It does seem as if you may need a medication review in the light of how you are feeling and blood test results.

[Fatsiajaponica]

Honestly, trying to see someone today is beyond possible. GP surgery would not entertain me until I had filled out a form on their website, waiting for a call...tomorrow it said. May have to go 111 as per PMRPro's advice if I get any worse, fortunately feel a little better today. Think covid in the mix here is also having it's say re breathlessness.