A Scary Situation with a Missed Dose: A quick story... - PMRGCAuk

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A Scary Situation with a Missed Dose

VOTSODsurvivor profile image
9 Replies

A quick story and a word of caution to my friends here. I accidently missed my bedtime dose of prednisone and was shocked at the result. Here’s what happened.

I am currently on 19 mg after a long struggle with PMR and a GCA appearance (treated with high dose and now inactive). I’m making efforts to taper down, but that’s another story. At this point, I find it works best to take a split dose daily with 12 mg in the morning with breakfast and 7 mg at bedtime with milk. I carefully pack my pill boxes every Saturday morning to make sure I don’t miss any of my prescriptions, especially my prednisone. Well, a few weeks ago I was packing the boxes and discovered I did not have enough to complete the week. No problem; I called the pharmacy for a refill and my wife picked it up the next day and put the bottle in the cupboard for me.

Unfortunately, I forgot about it, even though I labeled my pill box to remind myself! That Thursday evening, I swallowed the pills in the compartment and went to bed, not knowing I missed 7 mg of my precious pred! I had a terrible night of pain and loss of sleep. But that’s not the shocking part. As I started my morning, working on the computer, I still did not realize what happened and was feeling very tired and seriously depressed. My task at hand before breakfast was to type out a Power of Attorney document for my wife to care for the affairs of a disabled friend. I typed in the lady’s name, but when it came to typing in my wife’s, I could not remember her name! Needless to say, I was a little freaked out! “What is happening to me?” I immediately abandoned my computer work and returned to the kitchen to make breakfast. It was only then I realized what happened. Everything returned to normal a while after my morning dose, but it was quite scary to me that such a thing could happen after missing my evening dose.

In the days that followed, I was reminded of the rather precarious situation I am in being dependent on prednisone. I became concerned that if I should be in an accident and did not receive my prednisone, my adrenal insufficiency could put my life in danger. So, to mitigate this potential, I now wear a medical alert bracelet that, among other conditions, lists “Adrenal Insufficiency” and “Prednisone Dependent.” Anyone in a similar condition may want to consider this as well.

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VOTSODsurvivor profile image
VOTSODsurvivor
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9 Replies
Koalajane profile image
Koalajane

I have a bracelet I wear which say

MEDICAL ALERT. TAKING STEROIDS. STEROID-DEPENDENT

I also carry a blue steroid card and an NHS steroid emergency card.

It is always good to cover yourself

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

We very often discuss this scenario and once on steroids, honestly everyone should carry something stating just that whether it's a card, a bracelet, on phone or all.

However I would question your comment -treated with high dose and now inactive - missing one dose, and the reaction to that shows your PMR/GCA is very far from being inactive..

VOTSODsurvivor profile image
VOTSODsurvivor in reply to DorsetLady

Thanks for the insight. It was actually only my GCA that was treated with a high dose and has been inactive. My PMR is definitely still active, although controlled with my pred.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to VOTSODsurvivor

Having had GCA myself - I would question how do you it’s inactive? …. Like PMR you can only KNOW if/when you get to zero and no symptoms return…

But like the others, I think to do need medical advice on your reaction to missing one dose.

VOTSODsurvivor profile image
VOTSODsurvivor in reply to DorsetLady

I totally agree with your assessment. With my GCA, I call it inactive simply because I don't have any of the obvious symptoms. And yet, I am always on alert for any of those that might occur. When I had an obvious spate of GCA symptoms in 2021, my rheumy immediately checked me into hospital for steroid infusions (3000mg over 3 days), then put me on 60/day and tapered me down over the following weeks. No symptoms since, but one can never let one's guard down with GCA! Thanks again for your care and comments!

SheffieldJane profile image
SheffieldJane

That was quite a dramatic reaction. I would mention it to your doctor.

VOTSODsurvivor profile image
VOTSODsurvivor in reply to SheffieldJane

Thanks. I will definitely explain what happened to my Dr. I meet with her in a couple of weeks.

PMRpro profile image
PMRproAmbassador

Like SJ - I think that warrants a mention to your doctor. It is quite concerning the reaction was so extreme so quickly.

VOTSODsurvivor profile image
VOTSODsurvivor in reply to PMRpro

Thanks. I will definitely explain what happened to my Dr. I meet with her in a couple of weeks.

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