kidney problem & PMR

[Vito5566]

I’m on 20 mil steroids. I’m up every night every two hours 3/4 times a night . Started getting swelling on ankles / feet / legs & knees . Painful cramps in feet & calfs . Doctor put me on Quinine which help a bit but I know they are not good for me. Put me on Frumil water pills . Been two months & are working reasonably well. Also want to get off them . Regular blood tests now showing serum urea at 8.4 but serum creatinine is 120 . Now fingers have swollen & skin itchy . Now thinking the kidneys are keeping me up not the steroids. Seeing specialist next month & doctor again in a few days to sort it out . But I’m just a bit scared. You take steroids to help but it seems to bring other symptoms to your body. I’m out of breath if I bend down. A year ago I was so healthy now on so many pills . I’m a carer too & tbh I just got my head around excepting PMR but now all this I never been so stressed & scared in my life. Any help would be greatly appreciated

[piglette]

I got CKD probably from the steroids. CKD Stage 3b. I have a blood test each year to check how things are going. I was told I should not have water tablets with steroids.

[Vito5566 in reply to piglette]

Thank you

[Purpleazalia]

Hi VitoThe Mayo Clinic has a section on muscle cramps and mentions making sure that you have enough calcium, magnesium and potassium in your diet. It also suggests that stretching/exercise might help. Here's the link if you want to have a read.

mayoclinic.org/diseases-con...

There is a Health Unlocked forum called Kidney Disease where there should be more people who can answer questions and share their experiences with you.

I had some problems with more frequent visits to the loo (and urgency) when on higher doses of steroids which settled down as my steroid dose was reduced.

I agree about steroids being a help, but can bring other problems with them. It has felt as though I've been managing 2 new conditions rather than 1. Many of the side effects will improve as your dose comes down.

I hope your GP and consultant provide good advice and offer solutions for you.

[Vito5566 in reply to Purpleazalia]

Thank you so much for your kind reply. Really appreciate it

[Freya32]

Please try not to worry,It can all be fixed ..

Magnesium good for cramp rather than quinine,

Men getting up in night to pee, unless very old, should find the reason why.

Do see your Doctor.

[Vito5566 in reply to Freya32]

Thank you for your kind reply. I am seeing doctor & consultations. I m used to getting up for the odd wee but every night it’s two hours on the dot about four times. . Makes me think it’s part of the kidney problem.

[PMRpro Ambassador]

I'd suggest magnesium supplements would be better than quinine which most doctors are reluctant to prescribe.

It isn't uncommon for pred to make people pee at night - I'm sure you aren't alone.

[Vito5566 in reply to PMRpro]

Thanks but what worries me is I’m 4 times a night but only weeing maybe twice . But I’m just a few months my body is showing kidney problems ie breathless / itchy skin & blood test are saying kidney problems. . Steroids seem to bring extra problems which is scary. But seeing doctors and hopefully get it balanced. . Thanks for your reply

[Freya32 in reply to Vito5566]

Was also going to suggest prostate check but guess doctor has done the blood test for that and the exam.Also I take cranberry tablets or juice . ( With juice check if added sugar or sugar substitutes. Some sugar substitutes are bad .》...Frozen berries are available too. Add a little honey if too sour. Raw honey is best or good quality Manuka.

Drink plenty water.

Kidneys need adequate amounts.

At night some lemon slices in hot water with spoonful of honey and pinch salt...is good.

It seems kidneys work harder at night filtering etc and this is said to help. I take it but then I also drink lemon water throughout the day anyway.

It's different for women as they often get cystitis...wheras men with urine frequency especially at night or impeded flow is a different matter and needs investigation.

An MRI scan will show if a kidney is not functioning properly and 24 hr urine collection and testing.

But I expect the medics have done all this.

That's why we have two kidneys....in case one fails.

So no worries.

I guess prednisolone affects folk different ways.

But my urinary problems....and theyhave been dreadful, are now mostly resolved.... no night getting up.

Kidney pain is agony .

And there would possibly be blood in the pee on testing and sometimes smoky looking.

Because you are young yet it needs sorting.

Hope all resolved soon.

[Vito5566 in reply to Freya32]

Ahh you’re so kind . I will definitely look into the things you advise. It can be so overwhelming. Really appreciate your reply and hope things work out for you

[Freya32 in reply to Vito5566]

Well if it is definitely a kidney problem you would surely have pain in low back or middle or one side or the other. Even radiating to front.

They must have done scans and all the tests to say it is definitely kidney problems.

There is always the exception to the rule but pain is often the presenting factor.

Itchy skin i can be due to many things.

Mine itches due to long term Lyme disease.

Dry skin also causes itching.

Allergies cause itching.

If your Doctor has said you have kidney trouble then you need the right diet for the problem. Diet is so important.

..says she yearning for a packet of crisps.

The body can recover given the right things. Kidneys too.

It is most wonderfully designed.

Brain and gut communicate all the time.

Stress and anxiety are not helpful

Have a positive outlook.

All will be well.

You will get the treatment you need.

So

Just give it time.

And never give up hope.

[Vito5566 in reply to Freya32]

Have lots of back & leg pain every day worse in morning but never leaves me . Having sacticia in the autumn made things even more confusing. Feel like I’m in a merry go round. You take one pill to help but then they cause new symptoms. Have a good doctor & seeing specialist in two weeks. Hopefully I get there . Just a bit scary having so much going on in such a short time. Thanks once again

[Vito5566 in reply to PMRpro]

I am now taking more vitamins and understand about steroids & weeing . Of the four times I’m up at night need loo twice and I’m ok with that. Just worried as blood tests are showing kidneys are not happy since being on water pills but swelling has gone down since being on them . Maybe now I can stop them & hope swelling’s don’t come back . Thank you for your reply much appreciated

[Noona123]

Has your GP checked your prostrate? It could be enlarged and that puts pressure on the bladder, including not being able to pee sometimes, despite the urge. Also being pre-diabetes can make you want to pee more. Have you had your glucose levels checked?

[Vito5566 in reply to Noona123]

prostrate ok & been checked for diabetes. Think it’s definitely kidney not liking water pills . Thanks for getting back to me

[SnazzyD in reply to Vito5566]

When you say it has been checked, do you mean by a blood test or physical examination?

[Vito5566 in reply to SnazzyD]

blood test

[Freya32]

Well you need an MRI scan or even an ultrasound scan to check out your kidneys and 24 her urine sampling to see how they are working.Kidney pain may come in waves of unbearable pain as it progresses.

Comes mid to lower back either side or both.

But somet imes you get referred pain.

Your physician will arrange tests.

Do not have caffeine....makes you wee more. Drink lots of good water. And Rooibush tea, Avoid constipation.

Don't forget to wash the lemons well dry and dry them before slicing and simmering in water.

I am just about recovering from yet another bladder/kidney infection coupled with a pred withdrawal crisis, Gp only gives me two 5mg a day.

I need three.

I was down to one before next prescription was collected together with antibiotic.

Terrible 5 days... misery headaches, backaches, neck shoulder, nausea,, complete lethargy, jaw pain, hands useless, balance gone...even brain seized up. Eyes not good.

Couldn't eat.

Could not remember how to turn off tablet

Never want that again.

But obviously not my time to go....taking 3 preds at 11pm and shall sleep soon.

Must ask for some ones and twos and reduce very gradually.

Have had several bouts of pyelonephritis over recent years.

Kidney out of kilter you get pain.

Pulpy kidney you get pain in front and back. Or blood in the urine...

Sciatica find a top notch chiropractor... go by reputation

Cannot see why preds don't help with this...as I had had steroid spinal in jection for prolapsed disc, and pain free for six months.

Then chiropractor fixed it. 30 yrs ago...all good sinc

Wherever you are, US , Canada or other,

have a good day,/ evening.

[PMRpro Ambassador in reply to Freya32]

"Terrible 5 days... misery headaches, backaches, neck shoulder, nausea,, complete lethargy, jaw pain, hands useless, balance gone...even brain seized up. Eyes not good.

Couldn't eat.

Could not remember how to turn off tablet"

If you are that ill ever again, dial 999. You were on the verge of an adrenal crisis which, if left untreated, could kill you.

You need to get this sorted out with the GP. I assume you are talking about 5mg tablets? If you need 15mg a day, then that is what they must provide but you should probably also be thinking about tapering the dose and in that case you need a structured way to taper it slowly, preferably 1mg at a time using 1mg tablets. At most, 2.5mg which you get by cutting plain white tablets if that is what you are using.

"Cannot see why preds don't help with this...as I had had steroid spinal in jection for prolapsed disc, and pain free for six months."

Not everyone responds to them and sometimes they are incorrectly placed, You were lucky.

[Freya32 in reply to PMRpro]

Thank you PMR pro.Yes I did have such a crisis....and my son told me the same as you.

But at 84 they really are not going to bother.

The old are dispen sable here....

Especially with crisis now on.

And to be left 12 hrs on trolley would have finished me off...

I have asked receptionist to tell Doc 2 a day isn't enough. But to no avail.

And imust have 3 a day and some 1mg.s and reduce very slowly.

Will phone surgery tomorrow.

He is working single handed so don't like to bother him.

I just didn't know if I would live or die....and past caring....but today

after 15gr at 11 pm for last two nights....so much better...unbelievable......Body knows best.

I seem to have invaded Vito 5566,s thread.

Sorry.

[PMRpro Ambassador in reply to Freya32]

On this forum conversations develop - it isn't an invasion and it is the way we are.

[Freya32 in reply to PMRpro]

Thank you,That is reassuring and kindly done.

[Vito5566 in reply to Freya32]

well happy to say saw a specialist last Friday done loads of X-ray bloods urine test full MOT & booked a MRI . I let you know when results are in

[Freya32 in reply to Vito5566]

That is really good news.Saves you worrying and wondering.

I think you have two seperate issues here; the sacro iliac joint problem and a possible kidney problem.

Both can be rectified,

It may be that where the nerve is trapped it is then affecting the bladder and kidney.

Where there is a disc in the spine ,even high up , slightly askew then it can cause bladder problems. The right back manipulation solves many seemingly non -related problems.

My late husband was helped enormously ,and saved from what would have been an unnesscessary surgical intervention ,by chiropractic treatment....so much so from that time on he seldom , if ever, went to a GP again.

[Vito5566 in reply to Freya32]

Thanks for your advice I will let you know how it goes when results are in