Sometimes I think I'm my own worst enemy. I've been doing pretty well in recent months, only having to deal with a few relatively minor issues. I take Prednisone doses at 6 am and 6 pm each day, usually +/- an hour or so. Have some Prednisone side effects to deal with but that's really just part of dealing with PMR.
Yesterday evening I finished a long day at work and was pretty fatigued. We had dinner about 7 pm and afterwards I relaxed in the recliner watching TV. I did my very common routine of falling asleep about 9:30 and woke up about 3:00 am. What was different was waking up with sore shoulders and thighs. I first thought that maybe it was from work but then started wondering about the Prednisone. Did I take it at dinner at 7:00 pm? I must have - I never miss taking the Prednisone! That can't be it. Or could it? Did I take it? I struggle out of the recliner and go check the pill box. Darn, I didn't take it!!! I immediately took the Pred dose but knew I was going to pay for being 8 hours late taking it. And I was right.
By 4:30 I was as crippled as badly as I've ever been since having PMR, barely able to get out of the chair and only able to take 1 step at a time on the staircase. Was feeling very miserable. Even laying in bed was too painful. At 6:00 I took my next dose of Pred and by 8:00 am the pain and other issues were retreating. By 10:00 I was feeling very well again but worn out of course. I worked from 10:00 to the end of the day but kept myself to desk work as that was the most I could handle.
I'd like to say this is the first time I've done it to myself but I did the same thing about 3 and 6 months ago. I think the evening dose is the hard one sometimes when you're busy into the evening and more so because I've never had to take pills in the evening before now. My only question is if the pain, swelling, etc is from a quick, short flaring of the PMR or is it the adrenals? I have a hard time thinking it'd be the adrenal glands after only 8 hours missing a Pred dose.
Just feeling a bit dumb about this self-inflicted pain episode. Thanks for letting me vent here.
Nasty experience- so glad you're feeling better. What is your dosage and how long have you been on it? I know some people split the dose but have always been told to take all of mine in the morning. Feeling so bad without Pred makes you realise the difference it makes, side effects and all We are so lucky.
Raven, I would think it was PMR, Pred has a short life cycle. And the main adrenals side effect is fatigue. Unfortunately we all do it to ourselves, but we live through it promise not to do it again, till the next time. Think positive, smile and don't do it again, till the next time. 🙂
Glad you got through it, and hopefully you are feeling better. I take all of mine in the morning, I think I would struggle to remember evening dose, I forget my Adcal in the evening. Can you not take your Pred as soon as you have eaten, and put the med on the table so you don't forget. Take care and keep as well as you can.
Have had a couple flares that forced me to higher dosages a couple times. Currently have been at 15 mg for 6 weeks I think - my original starting dose in November last year. Seeing a new rheumy in 2 days and hoping he'll agree with a slow reduction schedule at no more than 10% per time.
After my first flare up taking just one dose of pred wasn't effective for a full 24 hours. I'd go through a milder version of what just happened to me, but every morning from 4 - 10. Splitting the dose makes the difference for me. Currently take 10 mg morning and 5 mg evening. You are right, we are so lucky to have Pred. Life would be totally miserable without it.
Yeah, I usually keep the pill box on the kitchen counter by the silverware drawer or on the table like you suggested. A couple of the youngest grandchildren, ages 5 and 6, were at our house for a few hours before I got off work. I had put the pill box out of reach and out of sight before I left the house that morning because I knew they were coming. That worked and I think it helped me forget too!
My brother in law had a kidney transplant and absolutely cannot miss doses of his anti rejection drugs. He has an alarm with him which goes off at the right time. Some wrist watches and most mobile phones have alarms.
I take a split dose, 7pm ish after supper and 5am. Works well for me. I have an alarm set on my phone so if I forget, it soon reminds me! Good luck with your drop, slowly slowly for success.
I have a bulky old "flip phone" that's a pain to constantly have in my pocket. I use the alarm but not with any regularity I'll admit. Usually the old phone gets left in my jacket at the end of the work day. Maybe it's time I moved into the 21st century and updated to a smaller, lighter cell phone. Thanks for the reminder about phone alarms.
Sorry you went though this. I'm quite addlebrained...so here's what I do (don't have little grandkids running around though)...I take out the pills and sit them on my calendar. The MINUTE I take them, I write on the calendar day: "pred 7 mg.".
On the calendar I keep track of exactly when I need to go to the next dose because it's marked. Would go crazy on the dsns method without it. Also It's a handy log to look back and see where I was dose wise on any given date. Hope this helps. Best wishes.
Yes, I imagine your brother in law would take all sorts of steps to avoid missing a dose! That's got to be critically important I'd think. My brother is a diabetic and has a modern insulin pump plumbed and wired into him. Once in a while when I'm visiting him, I'll jump when he starts beeping! I guess it's his pump letting him know that it's getting low on the insulin supply.
Dont know about adrenals but you have the exact effects I have.
If I miss the night dose, its like a total relapse and the pain is so severe it lays you out flat!
I'm hoping that one day this PMR goes as quick as it came.
No releif of hand issues yet. Doctors think its someething in addition to the PMR In Both hands, mainly the 2 middle fingers being numb, more so on my left hand. Unfortunately I'm left handed. I would love to have the normal feeling back in my hands. Almost 4 months know with this and PMR.
carpal tunnel was my first PMR symptom. The neurologist that I went to told me that he thought I had PMR and as soon as I get on pred the pain will go away. He was right. I'm not sure why you still have pain if you're on an adequate dose of pred.
Please don't feel dumb. It's very hard to keep up with all PMR sends our way. One of the hardest for me is never knowing what is causing what... in the last year I never know is the problem a pred side effect? Or not enough pred.,? Or PMR flare starting? Or need a new add on medicine... did I feel this yesterday? Am I a bit worse every night, or just tonight? Is this another new joint pop-up? Is it here to stay, or going to go back down? Its impossible to get it all right! Please Give yourself a pass and just hope it's a quick turn around .
Me too...you said it so well! Ahhhh, I'm not alone....I too battle with the mental demons, everyday. Not enough pred? Side effect from pred? Too much exercise/movement? Not enough? New disease I should worry about? Another body part falling apart? Thanks for making me feel a little better....
"My only question is if the pain, swelling, etc is from a quick, short flaring of the PMR or is it the adrenals"
Neither. The PMR is active all the time until it goes into remission although it may vary from day to day or week to week in activity. All the pred does is mop up all the inflammation that is created every morning by the new batch of cytoines shed in the body about 4.30am. The antiinflammatory effect of pred lasts anything from 12 to 36 hours depending on the person. So your return of pain was because the antiinflammatory effect had worn off by then having missed the second part of your split dose. When you take pred it doesn't work instantaneously - if it is prednisone it must first be absorbed in the stomach - and that varies depending on how much food is there - and then processed by the liver to make the active form prednisolone. By the time it reaches the peak in the blood it is 2 hours - then it can work. Prednisolone is absorbed and ready to go in 40-60 minutes usually.
I don't carry my phone in my pocket but I have it in my handbag somewhere around. I have the alarm set for an afternoon dose of something else (pred is immediately before bed, no probs!) - and the alarm just gets louder until I switch it off. I can hear it from 2 rooms away. That does cover the vast majority of situations! You can also get dosette boxes with an alarm.
Hope I'm not bugging you...I take pred at 8:00, but I don't perk up until around 3:00 pm or so. Some of the soreness and stiffness gets s little better before then, but my energy not so much. Ever heard of this? ( I'm at 7 mg...)
Are you on ordinary white non-coated pred? There are some people where it seems to take ages for it to start to work but I don't know why. I had that problem with Medrol but not anything else.
8am is very late by our standards - the sooner you take it after 4.30am, the less inflammation has been created for it to have to mop up and so the quicker the "clean floor" can be achieved. Lots of people wake early and take it about 5am and then settle down for another couple of hours to let it start to work. Less inflammation - quicker result usually.
Some people who have found it takes such a long time to take effect have tried taking their pred before bed - and so it is working by the time they get up. It is worth a try - it doesn't always affect sleep and if you are taking a long time to absorb it it shouldn't anyway.