Recently diagnosed, symptom question

I agree with @megz on this one. Prednisone can cause terrible gastro distress if taken on an empty stomach unless it is an enteric version. I was also one of those weird PMR patients that required 25 mg of Prednisone before all of my hip and shoulder pain was gone. Some folks do just need more. Blessings! ❤️

Hello @sjf1024 my heart goes out to you as I can relate to what you are going through. The beginning of this journey can be quite confusing on top of being debilitating! Depending on the severity of our symptoms, the length it took to get the diagnosis, the access to our medical providers and the lack of info we get in general it is all quite confusing and overwhelming! It falls on us to do the research, parse through good and bad info, find the reliable forums and try to make sense of it all. Add to that the fact that we are all different and there isn't a one size fits all or golden rule re treatment!
You are just at the beginning of you PMR journey which is still a huge learning curve in my mind, at least that's what it's been like for me.
I was diagnosed after months of being in pain which started in the wee hours of the morning and would progress in intensity through the day. I am 75 and up to that time an avid walker / hiker on the mountains surrounding
the valley where I live. Within about five months it seems that I went from being that woman to one that could hardly come down the stairs in the morning. I was diagnosed by my family Dr. Put on 20 MG of prednisone and within 2 days my symptoms almost disappeared. My instructions were to take 20 MG for a week, go to 15 for a week, then decrease to 12.5 . When I was on 12.5 for 2 days my symptoms came back with a vengeance.
My Dr then advised that I start again at 30mg for 2 weeks then decrease by 2.5 mg every week until I reach a dosage where symptoms start again but they are such that I can live with them.
As I understand it the idea is to try to reach the lowest possible dosage that allows us the least amount of discomfort. I am now at 20mg and so far so good symptoms wise.
That said I have side effects from the prednisone, sleeping, heavy sweating, bowel changes, thinning of my skin, feeling a bit dizzy especially in the morning etc. So I am anxious to get to as low a dose as possible.
I have not been referred to a rheumatologist and wonder if I should but specialists are hard to get to in my area.
My symptoms do get worse in the morning and I have changed my routine so that I eat sooner and take my pills. I can get heartburn easily so I must take them with food. My symptoms are mostly gone within a couple of hours and are bearable compared to what they were pre diagnosis.
I hope this helps and wish you the best of luck navigating through all of this.

"I'm definitely going to simplify things"

That's how I approached my prednisone taper. My doctors could never understand those complicated tapering schemes when I tried to explain them. They understood a slow taper but they thought some schemes were too complicated. They said they wouldn't be able to write a prescription as complicated as DSNS for example.

Most of the time, my rheumatologist just wanted to know the dose I was currently taking. They didn't much care how I arrived at my dose as long as it was decreasing.

For me, a 10 mg decrease every 5 years was too slow in my rheumatologist's opinion. Fortunately, when I finally reached 10 mg, a biologic sped things up. When I went from 7 mg to 3 mg in 4 weeks my doctor said I was tapering too quickly. Then I had to stop at 3 mg for a long time.

Hi, welcome to the club no-one wants to be in !! I had a pretty rough time the first few months on Prednisone. The morning dose would wear off around midnight, i took the next dose around 4-5am and it could sometimes take up to 6 hours to provide some relief from pain ans stiffness. It got better when I split my dose in the ratio of 2:1. The problem with splitting is maintaing the ratio as you reduce. I am now on 2.75mg morning and 0.5mg afternoon, it's a pain cutting up tiny pills and making sure your fractions are right. Once you are dependent on Prednisone, even very small dosage changes can have a big effect.

@jabrown0407
Prednisone should always be taken with food. It can be just a piece of toast or even a few saltine crackers—just a little of something. I only have experience with the uncoated tablets. Never had any enteric coating on the prednisone I took.
If you ate something right after you took your prednisone you may have provided some protection to your stomach.

@mtr2601 is correct that small reductions can make a big difference. Normally this is not the case as you taper down until you hit going below 10 to 15mg or so. That is the approximate level that adrenal glands most often publish cortisol when they are in charge. This is the point where adrenal insufficiency kicks in and you can start having pain that feels like a PMR flare.

If you drop from 20mg to 15mg, first that is a 25%reduction in dosage for your body and secondly that is still above the normal level that your adrenal glands function when they are operating at full force. Using that one might think you should be able to drop from 10mg to 7.5mg without problems. Few people can tolerate that large a drop at that low a dosage without pain. I designed a titrating schedule where below 10mg I dropped in much smaller amounts so I went from 10mg to 9mg, to 8.5mg to 8mg, to 7.5mg, etc. Once I hit 4mg I went down each step by 0.25mg. I stayed at each level for about 2 weeks. Pill splitting is not fun, but it worked for me.

My Rheumy was not in total agreement with my plan but willing to let me try. We had an agreement about my plans if I started having pain. It worked for me but like I said earlier we have biochemical engines and each one is a little different so we need to learn to listen to our bodies. They are in charge, not our minds when it comes to something like this.

There are good pill splitters and so-so pill splitters and bad pill splitters. My preferred design is one that holds the pill in a V-shaped pocket so the tablet fits, regardless of the tablet size. Then when I drop the blade I do it slowly with the steroid tablet since it is softer tablet and only needs a little pressure to split. Other tablets can be more compact and can tolerate more force. You should not split a coated pill, a time release pill, a caplet or anything else that might not be designed to split. You can ask your pharmacist if you have any questions, they know.

Food also ensures the med reaches the stomach. My doctor said he had a patient who burned his esophagus when a Prednisone got stuck because he dry swallowed it.

I’ve found this pattern to be fairly typical. I try to plan activities to start after 10:30. By then my body is usually - not always - ready to do things.

I haven't read through every comment so this may be repetitive.
I tend to wake up at 5:00AM every morning, and at that point I still feel pretty good, with just some discomfort. Now that I'm down to 7 mg I am sometimes able to fall back asleep for a little bit. When I decide I've slept as long as I'm going to I'll do some puzzles and/or read. By the time I get out of bed I am quite stiff and sore, especially if I have done some exercise the day before. I've been getting around to eating and taking my medication between 8:00 and 9:00 AM. I just take the medication in the morning, and it can take several hours to start to feel more normal. I feel better and better as the day progresses, especially after walking and moving around, and especially on days when I do Tai Chi and stretching.
My breakfast varies, but I often have fruit and yogurt, sometimes just a banana, sometimes eggs and root vegetable hash browns, etc. Most days I wash the pills down with soy milk, sometimes water. I try to eat things that contain a lot of potassium, as that helps to control hunger.
My taper has been 1 mg a month since I passed 10 mg. I don't know if that will change after 5mg.
Recently I learned from this group that sparkling water could be exacerbating my indigestion. Since I've stopped drinking it and have learned to like plain old water I have had very few issues with that.
The other thing I've learned online is that the crazy itching that I get around my right shoulder blade is caused by knots in the fascia, called fasciitis. Just having a friend work those knots out for me once in a while has been a huge help, especially for my sanity.
My last two tapers have taken longer to adjust to, which can feel really discouraging while you are going through it. I'm hoping that it gets easier with time, knock on wood.
Good luck!

I take cholestyramine 2x a day which blocks absorption. I have to take medications 1 hour before or 4 hours after. And I take it before eating so it does it's job to bind bile. When I was first diagnosed with PMR, I didn't want to take on an empty stomach so I waited until lunch to take the prednisone with lunch so the cholestyramine didn't block absorption. It was tough waiting like that. My rheumatologist really wanted me to take in the morning so I changed to take it first thing in the morning with a full glass of water and one spoonful of plain yogurt. My rheumatologist always insists I eat something even if very small. My stiff and soreness improves throughout the day very slowly. I'm on 10 mg and going down to 8 mg tomorrow. I'm a little nervous about the 2 mg drop. If it's a problem, I will discuss that taper method I learned about in this great chat room! Hang in there and enjoy the wisdom of so many members of this group! 💖