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Timing of taking prednisone

Polymyalgia Rheumatica (PMR) | Last Active: Jul 28 10:05am | Replies (52)

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@annak03

Sharing in case at all helpful to others:

I have been taking prednisolone for ~50% of each year of my life at very high doses (2mg/kg body weight and above) for 40 years (I am 45, female). Here are some things I have been told by specialists that really helped me manage taking this drug. Following this advice, I have very few side effects, and never have weight gain or skin infections/tissue issues on prednisolone, and my bone density is significantly higher than average for my age. It's still a difficult drug to manage, but I feel that if you need to take it, this can be done quite safely without much effect on your everyday life or long term health.

Here is some good advice I have received that seems to work:

1. Minimize things that cause additional inflammation - resist the temptation to run around like a lunatic, eat super clean - don't eat starchy carbohydrates and sugars, don't drink, don't go in the sun.
2. Limit stress on your organs by not drinking, taking non-essential medications processed by your organs - especially liver, limiting protein intake, and having periods of fasting.
3. It works better if you eat sparingly (for above reasons). And this is especially helpful when stopping taking it. This also helps to limit the chance of skin infections and odd blood sugar.
4. The side effects are better if you can take breaks from daily dosing - ideally up to two days a week.
5. If you have side effects and can do this in your medical state, stop the prednisolone and start again once everything has settled.
6. In a lot of cases, it is better to take a bigger dose for a shorter time than a small dose over an extended period (200mg a day for 6 weeks is apparently considered safer than 10mg per day over a year. It is far less likely to have any long term effect on your bones or tissues. Obviously this may not apply to others with different medical conditions).
7. There is some recent evidence that it might be better for some people to take their prednisolone at night rather than the morning, despite this likely requiring sedatives to sleep. I actually find this reduces side effects in me, but also reduces quality of sleep.
8. I also take methotrexate with prednisolone - I find that this stabilizes the swings in symptoms away from doses as the prednisolone wears off.
9. Do weight bearing exercise every day, ideally lift weights. This is more important than what you eat or your dosage if you want to protect your bones.
10. Face swelling can be minimized by sleeping in a more upright position, limiting your fluid intake, or dosing at night.

I do have some issues on long term constant dosing that I have never worked out how to manage and are worth watching out for: (I have a very rare medical condition, so these may not apply to others):
1. Muscle loss and fat loss - sometimes localised sudden fat loss (but this could be specific to my medical condition).
2. Exercising even moderately while taking prednisolone can cause my heart to beat very irregularly, and I have some very odd clotting readings in random blood tests (if you have a heart problem, this is something to watch for too).
3. Sparkly white stuff accumulates in my skin surface, causing me to shed layers of skin (without any blood test abnormalities to account for it).

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Replies to "Sharing in case at all helpful to others: I have been taking prednisolone for ~50% of..."

Dang. you deserve a medal of honor. "for 40 years (I am 45, female)." You would definitely know your prednisone. Useful information if your required to take the drug. You have done very well. I think , at least for me, that list would be hard to live by. But then you do what you have to. I preferred to put PMR in remission and get off. I am still left with some side effects just being on steroids for 6 months. Best of everything to you. You deserve it.