April 1 2014
Dear Dr. Xxxxx,
What is the prognosis?
If untreated, Addison’s disease is always fatal.
Doubtless this risk remains if Addison’s is not treated in accordance with its various guidelines, too. There are valid reasons for their existence – they should not simply be disregarded.
So I have to ask you, Dr. Xxxx, if you feel you cannot or will not comply with the guidelines as outlined below, and for the reasons given, regarding prescribing in quantity, to please refer me to an endocrinologist as a matter of extreme urgency. And, please, not the idiot who fouled up at APH. Given what he’s responsible for putting me through I cannot be responsible for the consequences were we to meet.
I am, I confess, staggered to learn that your “larger number” of hydrocortisone tablets amounts to a mere 30. This leaves very little scope for, well, anything really, and I have to ask you, especially in the light of what follows, to please reconsider.
For example, the NICE Guidelines: Intercurrent illness – adjustment of steroid dose section state that:-
“If the person is on antibiotics for infection or sepsis, the normal glucocorticoid (hydrocortisone, dexamethasone, or prednisolone) medication should be doubled until recovered.” See footnote on this subject.
There is a sputum sample on its way to APH; it will, I believe, require
antibiotics if the appearance, taste, and smell are any indication. As will my legs, should they become infected again (the skin is beginning to break down on both, and the right still has two open lesions, so it’s quite possible, and in both cases 30 tablets would be gone in 10 days.
The demand for additional hydrocortisone for someone like me, with a variety of concurrent conditions to complicate and worsen matters, is always going to be much higher than in a patient who is otherwise well except for Addison’s.
The same section also says:-
“If the person is undertaking strenuous exercise (such as a marathon), they will need to increase their medication. Doubling the normal dose of glucocorticoid and mineralocorticoid and increasing fluid intake is suggested.”
For me, any exercise is strenuous. Most days simply getting out of bed is a major challenge. That’s not to say that I would pre-load on hydrocortisone before doing so, that would be absurd, but it would be necessary before, for example, vacuuming, which routinely leaves me exhausted despite my investment in high-tech lightweight equipment (a hideously expensive Dyson).
And based on last year I have every reason to suppose I shall wind up back in APH at some point. It is (Addison’s Disease Self-Help Group Guidelines), standard procedure for Addison’s patients to self-administer their own hydrocortisone in hospital. Even if it were not, I should still do so, as it is extremely time-sensitive and the drugs rounds in APH are terrifyingly unreliable and, as I said previously, too often don’t happen at all. That is a risk I should not be expected to take.
The Addison’s Clinical Advisory Panel has this to say about prescribing:-
“A repeat prescription length of 3-6 months at a time is recommended for essential steroid medications, in case of unexpected supply shortages.
You need to ensure your GP understands the acute nature of your steroid dependence and your occasional need for emergency care.”
(Source: Managing your Addison’s, written by the ACAP and published by www.addisons.org.uk
And in their Caring for the patient with Addison’s: Information for GPs leaflet, they come down firmly in favour of 6 months:-
“Repeat prescription length ACAP recommends that all steroid-dependent patients be issued with six-monthly repeat prescriptions of their essential steroid
medication to minimise the risk of running out, especially during periodic supply disruptions.”
As I pointed out previously, I have researched this subject assiduously,** and I have information on every conceivable aspect of Addison’s and its medication,*** and it is quite clear to me that I shall be unable to deal with the unavoidable, if more minor, crises, that are part and parcel of Addison’s, for those of us who are already chronically ill, with a mere additional 10 days of tablets.
**Though I have not been able to establish how serious the supply problem mentioned is, but I would really rather not find out the hard way.
***Am I failing to produce any other hormones? It would seem likely in the absence of cortisol, but if so it’s not being addressed. Another APH foul-up?
I have absolutely no doubt that I would not have been as desperately ill as I was last year had my Addison’s (of which, of course, I was unaware), been adequately supported. That it is still not going to be, frankly, beggars belief.
Ronald W. Graves.
I buy my own because since around 2004 I have been treating my COPD in accordance with the GOLD guidelines, which NICE has only recently embraced, and my respiratory health has never been better (think back to how often I presented with infections prior to that time – it was about once a month; since then you can count the times you’ve seen me on the fingers of one hand, I’d think, not counting the chaos of last year). Now it flares up about once every two months, but the important thing is that I know from appearance, taste and smell as soon as an infection is brewing, and I can knock it down in 3 to 4 days. That’s something NICE aspires to but, with their antibiotic policy, will never achieve.
The problem with GOLD and NICE is that they are mutually exclusive – the latter being paranoid about antibiotics, the former being very much in favour of aggressive treatment, and that works for me. It will work even better if my Addison’s is properly supported with ample hydrocortisone.
That applies equally to my lymphoedema, if that becomes infected again. That it can do so very easily was brought hoe to me recently, when I had to take one of the nurses to task for spraying my open lesions with saliva (talking while peering closely at my leg).
Since then hygiene has visibly improved, but I still live in fear of further infection. I will not – I cannot – endure that pain again (and much of the time now it’s not a great deal better). Consider those infections – where did they come from? I never went out last year, at all, so my infections, including MRSA, had to come to me, and the only people I saw from May to December, on a daily basis, were nurses. QED?