Hello folks ,previously I had asked for advice about not being able to keep down my medication due to being sick over a couple of days. This was my third day without steroids .
After hours on the phone got through to docs , offered to check with pharmacist for advice get back to me .
No one got back to me . Managed to take 15 mg steroid with some yoghurt . Stayed down .
Had an appointment next day with the doc as I had a chest infection as well after the flu .
Again explained of my concern about missing my steroids , Doctor not concerned about this , more concerned that my throat was red and inflamed and I had not mentioned it ,
Given antibiotics .
Pains and feeling like I had been run over have been returning , feel like I’m back to square one .
Spoke with another Doctor on the phone about upping my dose was on 10 mg .
Have been lowering since August 22.
Lovely Doctor to speak with a registrar , she told me , did say she would need to speak with one of my own Doctors for advice .
I was told I had taken to too high a dose , to stick with 12:5 .
Have been doing this all over Christmas but as I said , I’m back in the rusted constrictive body armour , can’t get comfortable any where my buttocks are so painfull .
I’m weary , have lost more time from work .
I haven’t posted sooner feel like I’m always moaning wanted to give our experts on here a break seems like they are on call 24/7 , you must take care of your selves as well .🙏
My head tells me I need to up the dose , I do have an appointment (telephone ) for this afternoon .
what should I be upping the dose too. ?
I have spoke about using this forum for advice but so far it seems that’s just gone over their heads .
Thank you again for all your help ❤️
Written by
Staffieblue
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It really is unbelievable. They have a patient in front of them who is a long term, moderately high dose pred user who is too sick to take their tablets and keep them down anyway and then is ill enough to require abx - and they aren't worried about the lack of pred! A few years ago the endocrinology world was worried enough about HEALTHCARE PROFESSIONALS' lack of awareness of this problem potentially leading to adrenal crises so they updated the steroid emergency card and associated information - well, it doesn't appear to have got them (or us) anywhere does it!
Under Sick Day Rules you should probably go up to 20mg for the short term before dropping back - but your lot apparently have never heard of them.
I know you feel absolutely crap but if the primary pain is in the buttocks, then piriformis stretches might help that a lot. It will be uncomfortable to improve things but it will work.
If you don't have a firm bed and the floor is impossible, apparently it is possible to get a board to place on the bed to allow more effective therapy and i think you can borrow one in the UK (don't quote me mind!) and GPs can offer access to physio and I think you need to actively seek that since they aren't going to offer by the sound of things.
And don't ever worry about giving us a rest - If we don't have time we won't answer but we do keep an eye out for this sort of thing amongst all the greetings. I look at every NEW post as soon as I can, if it doesn't need an urgent answer I just read it. I live alone, I was alone for xmas and will also be alone for NY, the TV is rubbish (really, HOW can it be SOOOOOOOO bad?) though the wintersport is back, the forum isn't really a problem to keep an eye on.
I asked about a steroid card , the doctors receptionist said they didn’t dispense them the chemist didn’t have any, and said that I was only on a low dose . Should be fine . 🫤
When I speak with the doctor I will mention the sick day guide hope he is agreeable .
Thank you once again for your invaluable advice , I really think I would be lost and very anxious about all this and what’s going on with my body . You do think am I imaging all this —-you know you’re not .
%%$ - it is when you are at a low dose after being on pred for a long time that you are at risk. And even 10mg over a period of more than a couple months suppresses adrenal function. The longer you were above 10mg, the more likely it is.
You can download the new card here (amongst other places)
and it explains why you need it. So maybe print it off and show the chemist? Another example of why the concept of sending patients to the pharmacists may not be foolproof ...
Normally I'd say use 999 if you are displaying any signs of adrenal crisis - but that might not help at present so keep 10mg pred handy at all times and if you feel wobbly - take it.
I was ill with a chest infection four weeks after I'd gotten down to zero pred. Hubby and son had it mildly, but I was really poorly so I phoned 111 for advice on whether I should perhaps take some pred as per sick day rules. They had a Dr call back and I asked the question again, but Dr said she was more concerned about my chest and wanted to see me. Saw this Dr who sent me straight over to A&E as my pulse and blood pressure were high. I asked the A&E Dr about the lack of steroids and the possibility of feeling worse and high heart rate/pulse because of poor adrenal function etc and body having to work harder as a result, to fight the infection (seemed obvious to me!) but nobody would answer the question. Later heard two Drs discussing me and saying, "This lady's been on steroids an awfully long time!" and I wanted to shout down the ward, "Yes I b****y well have, but nobody will answer my question about whether I should be taking some now!" And no b****r ever did! I showed my steroid emergency card so many times that day! They all had no concerns whatsoever, even though I told them that my Mum had been close to death with an adrenal crisis many years ago when her GP reduced her from 60mg of pred to 0mg in a week as he was worried that a consultant would be angry that he'd had her on such a high dose for so long! You couldn't make it up!
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