Department of Anything That Can Go Wrong Will Go Wrong.
Letter to my GP, real one with stamp and envelope, since messages appear ill-absorbed.
My Prednisolone prescription was and should be a single package of 5 mg and 1 mg tabs in a 12-week cycle. 84 x 5 mg for 12 weeks and 168 x 1 mg for 4 weeks x 3. Currently this should be issue date 15 March for the 5 mg, next issue due 7 June and issue dates 13 March, 10 April and 8 May for the 1 mg.
In April the 1 mg tabs were uncoupled from the 12-week cycle. I have been put at risk of running out which had the standard prescription been followed would not have happened. Please could this be corrected.
This follows on from a previous mishap. I am now on 9 mg; at the start of March I was flaring badly and on 15 mg. The surgery was aware in March that I was on 15 mg but prescribed a repeat ‘weaning dose’. Had I not been flaring, this would have been more than enough; the 12-week package averages out at 11 mg/day. I was flaring. It is obvious that on 15, 14, 13, 12 mg I should be getting through a ‘weaning dose’ with at best narrow margins for running out, in consequence of which, as below, I am being given even less for the 12 weeks. What was I supposed to do, magically drop to 11 mg because that’s what the computer thought I should be taking? I reduced carefully and got it right.
On 19 April I asked for the 168 x 1 mg due 10 April and said it would be convenient if I were also prescribed the 168 x 1 mg which would obviously fall due on 8 May. If not, then I should clearly get the 8 May scrip on 8 May. This would have happily seen me through to the next issue date of 7 June of the 5 mg and 6 June of the 1 mg, by which time if all goes according to plan, I should be on 8 mg. It did not occur to me that anything as ridiculous and dangerous as scrapping the 8 May scrip would happen.
What I got was 168 x 1 mg issued 24 April next issue due 22 May. I was not asked what doses I was, am, and hope to be on or indeed how much I had already, pertinent to determining how much Prednisolone I need and when as dates on calendar and computer are not.
As you of course know, Pred is not to be abruptly stopped.
Ensure that withdrawal from long-term treatment is carried out gradually to reduce the risk of potentially fatal acute adrenal insufficiency or relapse of the condition being treated.
Scenario: Corticosteroids | Management | Corticosteroids - oral | CKS | NICE
Rule One of ensuring is surely to make sure the patient is never anywhere near running out.
1. Today 10 May I have a total of 137 1 mg tabs left and no 5 mg.. At 9 mg per day this will last 15 days: until 25 May. If issued 22 May, ready for collection on 25th. Any hiccups and I’m a candidate for ending up in A+E with adrenal crisis. You have to appear in person to get an emergency scrip. I walk with a rollator and can’t even get into my chemist’s without help because of a high step. My cousin collects my scrips. I’d have to arrange with her to meet me there. I am not interested in these scenarios.
I should not ever have been put in this situation but should have in hand the further 168 mg due 8 May,
2. The 5 mg are due 7 June. I should have to apply for more 1 mg on 19 June That is daft.
This is the second time the only part of a message to be absorbed was ‘need more Pred’. Am I dealing with humans or am I dealing with AI? I have wondered. In March I said I was flaring and on 15 mg and needed more Pred. I got an anonymous message asking why I needed more Pred because it was ahead of the date on the computer.
I was confident I was now back on course and I could go through to 7 June. I am instead left counting tablets, needlessly stressed and frightened by decisions that have no basis in reality.
Please therefore
1. Could the 168 x 1 mg clearly meant to cover the period 8 May to 7 June be issued immediately, then I can stop panicking, and please could I be told that this has been done.
2. On 7 June could I be issued the standard prescription of 84 x 5 mg, duration 12 weeks, and 168 x 1 mg tabs to repeat every four weeks and everything should then be fine until touch wood PMR finally gets bored and goes away.
Many thanks for your help.
Not of course as cool about this as I sound. . Deep breaths, calm, centred. Everyone who sees PMR patients ought to know we must not be stressed! We are like little flowers and our petals shrink and curl up at the edges, we retreat into ourselves and just want it all to go away. Gee, you really have to be proactive concerning your care.
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