Forgot my dose last night.: I’m 21 months since the... - PMRGCAuk

PMRGCAuk

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Forgot my dose last night.

Hindags profile image
9 Replies

I’m 21 months since the start of PMR and down from 20 mgs to almost 4. My inflammatory markers have been normal for the last 17 months except for when I had an ecoli bout after visiting Mexico 2 months ago. I had a rough transition from 6-5, probably adrenals and HPA wonkiness, but for the last month I’ve been feeling pretty normal. Even the late afternoon Wobblies and weakness seem to have faded. My fingers are in knots from crossing them for good luck. And every bit of wood within reach has been knocked on several times as I write this.

I take delayed release Pred at 10PM at night and this has allowed me to awaken without stiffness. Well last night a change in routine led to my forgetting to take the 4mg I put in my sweater pocket at 9:30pm. When I woke this morning at 7:30 I felt just the same as any morning, just fine. I did my morning exercises as usual, not noting anything. At around 8:30 I put on my sweater and found the four 1mg tablets I’d forgotten to take. I immediately took 4mg of immediate release Pred.. This means I was only 5-6 hours late on my dose.

So here is my question. Does it mean anything at all that I didn’t notice the missing dose when I got up? Does it mean I can speed up my DSNS taper a bit? I’ve been on a 42 day taper from 5-4. It was supposed to be a 38 day taper but a routine colonoscopy threw things off a bit. Tomorrow I start my first three days in a row of 4mgs.

I wonder what would have happened if I hadn’t taken the replacement dose in the morning. I was tempted, it thought it made no sense.

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Hindags
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9 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

I shouldn’t read too much into the fact you felt okay even after missing your dose. Many people can miss or be late with a dose and it not be a catastrophe, and although that’s good it doesn’t mean you wouldn’t have felt it later in the day if you hadn’t taken any.

Does it mean you can speed up your taper - maybe, but personally I’d be inclined to continue as you have been - why change something that’s working okay?

Your “normal” blood markers only show the Pred is working as it should, doesn’t mean the PMR has gone - sorry!

The low level of Pred you are on is not likely to cause much in the side effect line, but is probably still doing you more good than you realise, and as you are less than 2 years into your PMR journey there’s no rush!

Hindags profile image
Hindags in reply toDorsetLady

Thank you. Your reply is, of course, once again very sensible on every count.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toHindags

Yes, boring I know!

SnazzyD profile image
SnazzyD

Hello, if it was me, I would bask I the excitement but keep on as normal. Your body may be able to ride a day without but you don’t know what cumulative effect there would be. I’d go for a smooth, gentle ride and get there hitch free eventually rather than a faster one, never quite knowing if you’re pushing your luck.

Hindags profile image
Hindags in reply toSnazzyD

I appreciate the advice. I will hold to the course. Thanks.

Marilyn1959 profile image
Marilyn1959

You have done so well Hindags - 20mgs to 4mgs in 21 months plus coping with ecoli! Wow! I expect you would have felt something later on, if only pred withdrawal. I have forgotten my pred a couple of times and only realised about ten hours later when sudden stiffness started. Since you have been successful I would stick to what is working for you and forget the nagging what if. Better safe than sorry. Keep crossing fingers and touching wood - it obviously works, but watch out for splinters!

piglette profile image
piglette

Most of us have forgotten to take our pred at some point. You were lucky you remembered reasonably soon after you were due to take them. I left mine (Lodotra/Rayos) until the afternoon when I virtually seized up. I could not think why I was in so much pain.

Just carry on as normal.

PMRpro profile image
PMRproAmbassador

If you are doing so well I wouldn't speed things up much - this is slowness for adrenal territory now. It is such a low dose it won't be doing any harm.

I used to take a double dose on alternate days - and I didn't start to get symptoms until well over 36 hours in.

SheffieldJane profile image
SheffieldJane

Million dollar question. I think your progress has been steady and sure. I would be inclined to keep calm and carry on. You still experience symptoms, suggesting that the disease is not completely in remission. Perhaps you just fooled your body that one time. I seem to remember this happening to me on a much higher dose, many months ago. I also thought it meant I was better. I am afraid that the disease had not done with me, as I subsequently learned. I think it’s a good sign and you are doing a good and patient taper. As Mark found out, even zero can have surprises for us. Good luck.

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