Hospital admittance update: I thought I did a post... - PMRGCAuk

PMRGCAuk

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Hospital admittance update

mad-country-lover profile image

I thought I did a post yesterday but I was in a bit of a state and can only use my phone in here. I was admitted to hospital as blood results were not good and a few areas PMRpro had advised me on ( thank you for that) I was able to ask more in-depth questions after your response to my last post. So was admitted for pet scan and cat scan and all sorts of tests on Monday for 3 days .I am still here and could be for another week. I have seen 2 rhumatologist umpteen interms had a head scan.full body x-ray.and been examined and questioned. My high potassium levels are due to blood pressure meds when they looked back it went up when GP changed them .so that is being sorted.i am just not happy with having my preds reduced from 25mg pet day to 15 mg per day .first day of reduction today. I almost had an argument last night as it does not make sense to me. When I said I thought it was dangerous to drop by 10 mg over night. I was told that's why they are keeping me in.if I have a bad reaction I will be given other medications instantly.they don't think it's a problem I'm worried sick had any one else dropped by 10 mg over night and please PMRpro what are your views on this xx

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mad-country-lover
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15 Replies
SnazzyD profile image
SnazzyD

I don’t know but at least they are dropping to a level where you still have well over the physiological level of cortisol from 15mg. Your adrenals wouldn’t be expected to fend for themselves at this point. Why are they doing it?

mad-country-lover profile image
mad-country-lover in reply to SnazzyD

Thank you for this information my head is all over the place I only have my phone with me so am unable to access any information take care xx

PMRpro profile image
PMRproAmbassador

It's fine - stop worrying.

Lots of doctors tell patients to drop 10mg overnight - and lots of people do at above about 20mg. The reason we say don't do it is because while you are seeking the right dose for you it may miss the dose that you need and it is also often uncomfortable - why be uncomfortable while dealing with day to day life? You can reduce quickly down to 10mg - only then must you slow down because of waiting for returning adrenal function, then it would be dangerous to drop so much in one go. You are in hospital and they know you have reduced a lot - if you were to be unwell because of that they will react with hydrocortisone immediately. Different matter if you are out in the street without any information on you about being a long term corticosteroid patient - then they wouldn't know why you were ill and possibly unable to explain. They are probably reducing the dose like that because they want to do a PET scan and pred interferes with the result so they want you as low as possible before they do it.

Not the way to spend Easter weekend for you or your family - but you can tell your GP off for not reacting to the rising potassium as much as anything. And hopefully they will get to the bottom of the cause of your symptoms.

mad-country-lover profile image
mad-country-lover in reply to PMRpro

Thank you PMRpro I really appreciate you explaining this to me.and just before I looked back on here the consultant came to see how I was doing as this is the first day of reduction.after forgetting to take my midday 10mg 2weeks ago I know what to expect so I did tell him that it won't affect me till later on this evening or tomorrow morning and he said one of the reasons for the quick reduction is in preparation for a PET scan . So you were spot on there as well don't know what I would have done without this group it's worth its weight in gold .have a lovely weekend hope the sun is shinning take care xx

mad-country-lover profile image
mad-country-lover in reply to PMRpro

PMRpro

After the 10 mg reduction I am in pain.at 3 this morning I have the stinging burning feeling in muscles coupled with pain in hips and legs ..I feel sick can't eat and BP went up from 112 to 144 this morning. How ever the thought of the PET scan scheduled for this week and a diagnosis I thought would see me through.

The consultant has just been so wants to up my pain meds. And to my absolute horror they intend reducing my preds from 25 mg to 5mg in only 5-6 days before the scan. When I said it would cause problems going below10mg so quickly he said that was not his decision I know I'm in the right place but this is so scary .

in reply to mad-country-lover

Oh dear..i bet its scary. But just remember you are somewhere where they can treat you asap if it goes sideways. Try to relax and take your mind away from the pain. Easy for me to say. Sending big hugs. Xx

mad-country-lover profile image
mad-country-lover in reply to

Thank you it is appreciated. I can cope with pain it's the feeling so unwell and the thought of it getting worse .going back to square 1 and being almost disabled again . And not knowing what to expect. The consultant was rushed today he may spend more time tomorrow going over it. But again I'm in the position where I do not agree with this it's to fast .take care xx

in reply to mad-country-lover

I wouldnt like it either. We know what dropping 1mg is like - i have always gone by 0.5mg so i can imagine the physical and emotional stress dropping so much might cause. I presume they will raise it again after they have done the tests. Its just a shame they can't be done with pred. I would be asking for sleeping pill tonight if i were you .🌻

mad-country-lover profile image
mad-country-lover in reply to

It is very stressful I have been given some other stronger pain killers .I do listen to you tube positive sleep music on my phone over night. It all helps take care xx

PMRpro profile image
PMRproAmbassador in reply to mad-country-lover

5mg is enough for most people for most situations - and if it isn't they can do something about it. Look at it this way: this is the quickest they can do it. Otherwise you could have weeks of severe pain,

mad-country-lover profile image
mad-country-lover in reply to PMRpro

Thank you so much for your kind support and reassurance. It is the not understanding bit as well as the in known that is getting to me. The consultant might do what he did the other day come tomorrow explain a bit more and reasure me.

Until then they just let you stew on it ooo la on the bright side they are lovely in here . I have managed to crack a few French jokes with the nurses and I know I will be sorted out. I can't get over the amount of specialist I have seen and tests done so quickly take care xx

PMRpro profile image
PMRproAmbassador in reply to mad-country-lover

Are you fluent? Being ill in a spare language can always be difficult even when you are good at it! I know from experience ;)

mad-country-lover profile image
mad-country-lover in reply to PMRpro

A couple of them have some English most seem to have some so it has not been to bad. But they don't like me questioning .I have said I need to know and understand I am not just saying yes then getting a shock .I have had my meds mixed up twice if I'd not checked and questioned I would have had 2 lots of statins and no blood pressure meds .but when it comes to reducing the preds I think they should explain what they are doing and at least reasure me .take care I will keep this updated xx

mad-country-lover profile image
mad-country-lover in reply to PMRpro

I have just realised and should have said it's not the language barrier in here it's having things explained to me as I need to understand xx

PMRpro profile image
PMRproAmbassador in reply to mad-country-lover

Ah yes - but THAT is the cultural barrier too. They aren't used to explaining to native speakers either! The thought a non-native speaker might understand is totally outwith their worldview.

My husband and I know all our usual doctors well and discuss things as equals - it was a bit of a shock when he was in hospital in the last several months and we got the talking down act from the ward doctors. Got a bit different when the Head of Medicine did the ward round and introduced himself as "I'm Dr. X ..." - and OH responded with "I'm Dr H ..." ;)

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