Back to taking 20 mg Prednison for a week now. Do I have to get used to the pains in my arms and shoulders every morning?

[km5yx7]

It's frustrating to be so painful in the mornings. I am very careful how I use my arms, no exercises this week at all, just walks in the evening. I don' want take more than 20mg, the same amount I started with 3 month ago.

[YuliK]

Before you increased to 20 mg. How much had you reduced to ?

[km5yx7 in reply to YuliK]

I was down to 12 mg ( split dose) and felt good for 2 weeks, but did too much

with arms and had flare up.

[YuliK in reply to km5yx7]

KM. Hi

Three months down to 12mg. I think that's a very quick reduction indeed, but the moderators here are more experienced than I.

You obviously 🙄 haven't used the very slow reduction. That's why your arms and shoulders are aching.

Good luck second time round.

Someone more qualified will explain better than I can.

Yulik

[jinasc]

Try this, if you wake up anytime after 2am, hot drink and slice of bread and butter, and pred . No adcal etc.

Back to sleep..................when you wake up...................warm shower.................

That gives your pred time to work......around 2am normally your adrenals would be working to supply your natural pred ready for the morning. If you are waking up and getting up and then taking them............the effect won't be available for about an hour or an hour and a half.

If you are working and have to be out of the house at a certain time, then set the alarm earlier, take the pred, go back to sleep (hopefully) and then warm shower.

[GOOD_GRIEF]

I'm not a doctor, but based on my personal experience, here's what I think:

Your too fast taper rushed you past the dose that would be effective in controlling the level of inflammation your PMR is producing. ( My PMR was held at bay initially by my 20mg dose, and I felt great. I went to my rheumy's office and did a little soft shoe dance to demonstrate my improvement. They prescribed a too steep and quick taper that threw me into near paralysis for 6 months. That's when I took control of my medication dosage.)

Sit at 20mg for at least a month before trying to reduce, and then take it in much smaller steps - 1mg or .5mg at a time, sitting at least 4 weeks at each level. If your pain level is very low or absent (which is the symptom of your inflammation level), only then do you move on.

There are a number of strategies you can try to diminish your morning symptoms, chief among them taking your dose at around 2AM, and splitting your dose so you're taking some before bed and some in the morning after waking. Personally, early on I split my dose 50/50, taking half before bed and half upon waking. I reduced the morning dose only until I hit zero, the started reducing the evening dose. I'm at 5.5mg now having entered my 3rd year of PMR last November. I've had no flares and no injuries since I started using this method instead of doing what the doctor told me to do. There have been times when I've gone up a half or full mg when bad weather was coming, when a cold was coming on, or I was anticipating a stressful period. Sometimes it was only for a day or two, sometimes it was for a week or two. For me, this strategy worked. Others will talk about splitting doses 2/3 in the AM and 1/3 in the PM, never reducing by more than 10% of the current dose, and sitting at each level for about 4 weeks.

After getting the inflammation under control, I found that mild exercise - walking, arm circles, gentle stretching and the like - actually made me feel better. But you have to wait for the pain levels to subside and then take it very slowly. Both PMR and pred make us injury prone, from tendon and ligament troubles and muscle pulls, to balance issues and falls. No need to add injury to illness by being too ambitious.

On average, PMR lasts 5.9 years. Your mileage may vary. Like everything else in life, success is a trick of balance. At every stage - meaning every day - you have to take enough pred to control the inflammation you're experiencing, and your best guide to that is the level of pain you are experiencing from one day to the next. Four weeks between reductions seems to be about the right length of time for most of us to determine whether an early uptick in pain is withdrawal. If the pain get worse every day over the course of 7-10 days, go back to the last dose, because that indicates your level of inflammation is not controlled. Sit there and wait. If is is diminishing, don't attempt to start another reduction until you're comfortable again.

Take your calcium and D3. Make sure you get plenty of deep rest. If you can't sleep, then read or watch TV or watch the world go by from a comfortable seat. Don't sweat the small stuff. Name the dust bunnies instead of chasing them. Get some help from family, friends and neighbors with tasks that are just too much for you. (You'll be surprised how much people want to help if you ask them.) Eat nutrient dense meals and drop the unnecessary carb-laden calories. Make it a point to connect with another human being every day, even if it's just by phone and only for a few minutes.

Most important, find a something beautiful, or something funny, or something kind to do for someone else every day.

You're sore. Your tired, You're frustrated. But you're still here, you're still you. This too shall pass if you take care of yourself.

[km5yx7 in reply to GOOD_GRIEF]

Thank you---great advise in detail. Best yet and it fits me, too with my split dose.

I will stay with 20 for a while and go slower.

Hugs to you.

[GOOD_GRIEF in reply to km5yx7]

Yes, gently please. There's no such thing as too many - given or received.

[Thelmarina in reply to GOOD_GRIEF]

Great reply, and thanks for the tips I’ve picked up too. It’s such an unknown science with trial and error the name of the game. I fell into the trap of thinking I could do an hour’s gardening (only an hour!) and it’s taken over a week to get back to ‘normal’. Hey ho! I won’t do that again! But I’m here, enjoying a coal fire in June and watching tennis. Could be worse! 😀

[Hidden in reply to Thelmarina]

You can be in the garden for an hour as long as you do 5 or 10mins rest for 10, do for 10, rest etc etc. At least you know now.

[Oxford8 in reply to GOOD_GRIEF]

Thank you! I have had to go back up to 20mg pred and have been wanting to race down too quickly. Will take it much more slowly now. Such good advice.

[Pollynolongerinagony in reply to GOOD_GRIEF]

WILL YOU MARRY ME??????

[Pollynolongerinagony in reply to Pollynolongerinagony]

seriously, u r amazing, excellent advice for all of us, bless you x

[SheffieldJane]

It is worth considering that some of us absorb Pred less well. It is pointless allowing inflammation to go unchecked. You need to talk to your doctor about how symptomatic you still are. Difficult as it is ( and we all hate being on this drug) you may have to consider 5 mgs more in the short term. With these diseases, there is no merit in suffering - it just prolongs the agony. I do sympathise and have been in your position. Take care!

[S4ndy]

"Name the dust bunnies, don't chase them" love it! x