Timing of taking prednisone

I think the prednisone is causing the hunger. I've gained 40lbs! in about a year! Never weighed this much in my life. I try to get into a routine of not snacking so much but can't control it. I'm going to try a carb reduction diabetes class at the local Y to see if that will help. Maybe accountability will help me. I prepare good healthy meals & exercise 6-7 days a week. Tapering now at 11 mg. Reducing 1 mg a month. Not easy but it is working for the reducing of prednisone. Good luck!

Yes the Pred is def brutal, but a miracle when first diagnosed. I was diagnosed with PMR in Jan. 2022 and started at 20 mg. which worked immediately. I had managed to taper down to 11 mg then up to 14 (after a flare). In Jan. 2023 I had to go to ER with signs of GCA, which resulted in a Temporal Artery Biopsy and my being on 60 mg. Pred. The biopsy from all reports is negative for GCA. So I've been on the higher dose for 6 weeks. Now trying to reduce from 60 to 50 and back up to 55 mg. after much of the pains began to return. Yesterday, reduced to 50 mg. again and it's been a terrible two days. Very zombie-like, pains returned, kind of drunk. So much brain fog and the fatigue is relentless. I'm not complaining, but just want to let others know they are not alone (as do you I'm sure).
BUT, I'm going to persevere because I definitely need to get down to, at the least, the 20 mg. I began with a year ago.

Yes. It is the prednisone (which causes glucose spikes) causing the hunger. I'm trying to reduce my carbs and eat more protein at these ravenous times. A hard-boiled egg and some veggies take away that craving. I also bought myself some dried dates and eat raisins when I "need" something sweet. I've been eating more healthy than ever before. The weight gain over the last year has been about 12 lbs. which isn't too bad, but I do have moon face and a ring neck, so fat has shifted upward I suppose. Good luck with your diabetes class; the more information we have the better off we are. Take care!

My dr told me to taper 1/2 mg per week. I started at 12 mg. Now down to 6.

How you taper is between you and your Dr. My Dr. wants me to taper at a lower dose for a month to avoid side effects from tapering. It seems to be working so far.

I also have started taking my prednisone before bedtime.It works for me

I am so ecstatic to have found this sight!!!
I have mixed autoimmune issues. I feel I have not been managed in the way that farm animals deserve.
Nothing but Prednisone has helped me function. I have damaged progressing now with my liver, first with my kidneys, and was told by my rheumy my fam. heart disease was suspicious of autoimmune damage, but then denied cardiac Ct.or MRI.because I squeaked by on a stress test.
At any rate, I was cut off like a drug addict of Prednisone. Unable to walk, running in circles. Not able to take any meds for gout, or statins or Tylenol (liver enzymes increasing) or ibuprofen types (kidney issues, I had to stop)
So what is left ? Opiates, really? This day in age! What so I can slowly die an addict? I am homeless from this, spent my life savings.
I see my opinions, except osteoporosis, maybe dibeties and go back to work as a nurse. Or die in a RV in a parking lot.
Gee. That's not a thought question for me.

So sorry for your rough time. Prednisone is the gold standard for treatment but have read many posts and folks have shared articles about other options people have pursued. I worked as a nurse prior to diagnosis. Wore a back brace and TENS unit under my uniform (bad muscle spasms), My signature fragrance became BioFreeze. Using a heating pad helped in the morning, and as hard as it was, walking around the yard a bit helped with the pain. Eventually got into some bike riding. Poke around this sight, ask questions, arm yourself with knowledge so you can continue to advocate and discuss options with your doctor(s). Don't give up.
Courage.

Hello @taylorannette555, I would like to add my welcome to Connect along with @marmak and others. I can't imagine how difficult it is for you dealing with multiple autoimmune conditions and not being able to take any meds due to kidney or liver issues. I'm sure that you are not alone with your struggle and there are others here on Connect who can relate and share what has helped them. Earlier this year the search function on Connect has been enhanced and locates discussions, comments, newsfeed and blog posts on Connect related to your search phrase or words. You might want to click on the search box at the top of the Connect page or the small magnifying glass icon if you are using a mobile device to view Connect. Here's a list of results searching with the words "multiple autoimmune" if you want to take a test ride - https://connect.mayoclinic.org/search/?search=multiple+autoimmune.

I thought you might also find the following site helpful when dealing with health care appointments - Patient Revolution: https://www.patientrevolution.org/tools.

I'm sorry to hear you were cut off of prednisone. Was your rheumatologist able to offer any helpful alternatives or suggestions?

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).