Just had a bit of a grilling from GP about use of sick day rules. First of all he had no idea what I was talking about then he said they were intended only for patients who had been diagnosed with adrenal insufficiency. He was quite suspicious about where had I got it, who had sent it to me. Was a bit taken aback by all this and not made easier as I didn't have a copy in front of me so couldn't really answer his questions fully.
So just to be clear, does anyone know the origin of these rules and am I correct in thinking that the rules do apply to all patients taking long term pred?
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chriss48
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When I was seeing an Endocrinologist and my Synacthen started to look pretty good at 1.5mg they still told me to observe sick day rules. They assumed that there was a possibility of my adrenal glands being ok on a good day but not necessarily rising to the challenge on a bad one. In the end I went by how I felt.
I’m sure I read that he has some emotional issues for which he has received help. Hoping he will be more able to deal with them during this years Wimbledon.
but he is not alone is he … and the pros don’t like people telling them about an illness they no very little about!!! Ie I have just been told to take the med dose (Pred)they advise without seeing or talking to a doctor
He isn't. They set up an Expert Patient programme because it is acknowledged that often we do know our disorder best but a study found it didn't work as well as it should because HCPs got their knickers in a twist! Not sure how you get around it - part of it was so we had control of our meds. A former nurse, formerly on this forum, said not so long ago that he'd not been bothered about timing of patient's drugs because it was not practical. The spacing of MY medication is critical because 2 of them, taken 2 and 3 times daily respectively, must not be taken within 1-2 hours of each other. Luckily I know my tablets well (none of this "the round white one for my heart doctor" nonsense) so if they bring them all together before breakfast I can sort them out but it is a lot easier with a dosette box and alarms on the phone and even then I get it wrong occasionally!! I get wrong from the cardiologists if the anticoagulant isn't taken right and it's me who suffers if the anti-arrhythmic isn't taken right and they are the two that can't be mixed.
They apply for all patients on long term pred. It is because anyone who has been on pred for more than a couple of months is suffering from secondary adrenal insufficiency - in the event of a stressful event such as illness or trauma, the body would normally produce more cortisol to boost the body's ability to recover and heal. Any patient on higher doses, above about 20mg, has plenty of steroid available but below that a bit more may be beneficial and well below that necessary to improve recovery and avoid trouble.
I find it amazing/disgusting that a GP doesn't know that any patient on long term pred by definition has adrenal insufficiency. He obviously slept through his physiology lectures ...
Well now, this has never been discussed with my GP. Maybe on a day when I'm feeling a bit mischievous I might ring for an appointment to discuss this. Mind you, I'd have to get past Dr Dragon who leaves the answerphone message - probably just easier to slink back into my house and stop bothering him/them!!! Would be fun though ..............
Thanks for all your replies, glad to know I wasnt mistaken, it is worrying though. This was a GP new to the surgery, think he must prefer his patients to be in the dark about their condition, he also gave advice/instruction about tapering, needless to say this didn't follow the dead slow method! Think will give this GP a miss in future.
When I visited my rheumatologist last September she asked me to speak to two newly qualified young doctors about my GCA. So what I had expected to be quite a short appointment turned into quite a long one. I just hope they don't forget what I said and that it makes them better doctors.
There have been a few uni courses that included patients doing that - and once it sinks in what GCA and PMR can do to us it makes them far better doctors ongoing.
I am a retired Uni lecturer in Midwifery and Womens health and the sessions in which 'Patients/Service Users' took part were THE most highly valued by students!. . and tutors too! I learnt so much!!
A bit back the charity was looking for patients to participate in such sessions - no idea what came of it. One original founded of the PMRGCA NE charity used to do such sessions with Mike Plant at James Cook in Teeside.
I venture to say that probably very few of us have been told about sick day rules. Over the seven years no rheumatologists, consultants, GPS, pharmacists have ever mentioned it or provided me with a blue steroid card. Without this forum I wouldn’t have a clue.
The first I heard of sick day rules was when I found this forum a couple of months ago. So when I was made aware of them on here, I printed them out, so that I can take a copy with me if ever I get to see a GP again (fairly unlikely nowadays I know!).
Before then, for all the 13 years I've had PMR and the 12 years I've been on Pred, it's never been mentioned by anyone, GP, specialist, pharmacist, the lot. I was however given a steroid card as soon as I started on them back in July 2010, and I've amended the dosage on it as I've slowly reduced over the years.
I love this site!... Here in the US, living near a major medical center, I had never before heard of sick day rules for anyone, never mind those of us on long-term prednisone. When I once mentioned to my rheumy helping my adrenals with supplements, he scoffed at me, No No No! I will be sure to notify him of these rules, especially since I now have an explanation for why I recently had 2 mysterious bouts of dizziness and severe diarrhea!! Thank you thank you thank you for posting this!
thanks for your reply Pro. But it’s clear from these 2 episodes that my adrenals are upset and my ONR symptoms have me holding at 8.5mg Pred. What to do???
As DL says, very slow taper. My point was that supplements are a waste of money - whatever they say on the internet, they don't stimulate the adrenals into functioning. If you need 8.5mg for the PMR, that is what you need. It isn't a relentless, non-stop reduction to zero - you are looking for the lowest effective dose, that gives the same result as the starting dose. The pred cured nothing, it is a management strategy for an ongoing chronic condition. At present that is 8.5mg, it doesn't mean you won't get lower, just not yet.
Sorry? Don't get your point. The slow taper is even more important for adrenal issues. You asked what to do - we've told you. There is no other approach
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