New PMR patient, wondering if mornings will become pain free someday

Hi, in regards to ever being pain free, it can happen. I know everyone has a different experience, but in my case, I am pain free and I swear it is due to the split dose. It only makes sense. Prednisone only stays in your system for 16-22 hours and then it wears off. So if you are taking it at 7am or 8 am, it is going to wear off in the middle of the night. In my case, that pain woke me up, some folks sleep through it I guess, but some wake up in the morning with the pain. You feel like you did on day one, (I know this because once I forgot to take my evening dose). It takes about 2 hrs for the morning dose of Prednisone to kick in, it is about midday until you feel great...and then the cycle repeats. That is why the split dose works for me.... I have Prednisone in my system around the clock, no breakthrough pain, sleep great, feel great (except the sweating side effect), lots of energy but no pain. So yes, you can be pain free, hopefully, maybe just need to find the right balance of how you are taking Prednisone.
I don't claim to know everything and I could be missing something but I don't understand why everyone is not prescribed a split dose, knowing that the half-life of prednisone is limited and it does not stay in the system a full 24 hrs, allowing it to wear off with return of the inflammatory symtoms. It seems like it is defeating the purpose. I know that the single dose does work for some people, everyone is different. Oh well, I am just glad I found something that worked for me.
Wishing you luck, hope you find comfort.
P.S. I took 20, split 10-10, then 15, split 10-5, now on 10, split 5-5, So far so good.....

Thanks for that great insight into dosage timing. I wake up too early ( but remain pain free) cuz I think the nighttime pill kicks in to the point of slight jitters which maybe causes wakefulness ( although not noticeable when laying there, just awake). I may try a 4pm move and later test a 10pm one.
Ted

Like you I did the split dose until this last flare. Getting down to 2 mg was a toss up whether to taper the morn or eve dose. At one point an on call rheumatologist I talked to immediately told me to take my entire dose in the morning, it was better to "knock out all the inflammation at once". Looking at it that way kinda made sense to me so with this last flare I am taking the entire dose in the morning. I am at 7mg and doing okay.
suzanne

Great! I am so glad that is working for you. Like I said, everyone is different, your body will let you know if you are doing it right. I can't wait to get down that low to have to make that same decision.
So, to clarify, you are at 7 now. Does that mean you were split at 5 in am and 2 at pm and decided to take all 7 now in the am? And how long have you had PMR and what dose did you start at?
I am on 10 (5-5), grateful that I went quickly from 20 to 15 to 10, in only 2 months, but my doc wants me on the 10 for two months. I do not like Prednisone because of the side effects and hope I can get off rather sooner than later. I think 2 months at 10 is too long but I am trying to learn other peoples tapering schedule so that I know how it works. I imagine I will be trying all sorts of schedules until I find one that works for me like you did.
Anyway, I appreciate your feedback and hope to hear more of your story. Thanks, JJ

My pmr was diagnosed in Dec, 2018 and I started on 20 mg. I started splitting the dose because the discomfort was intense first thing in the morning and I felt much better when I split the dose. I have not been consistent about keeping dose records but looking back at Dr summaries when I got to 10 mg I was doing 6/4, 5/4, 5/3 . Since 2019 I have been up to 10 mg a few times because of flares.
In Jan of this year I was down to 1 mg in the morn and .5 in the eve. And my inflammation markers were very low. Was all good until April when my hands started bothering me. I went back up to 10 mg still splitting the dose and was down to 5 mg by the end of June and was supposed to take all 5 mg in the morning, my hands were better.
Then my hands got bad, swollen, stiff, painful. I could not squeeze the toothpaste one morning, could not twist bottle caps, dropped a skillet one day. My crp was 24 and my WBC was high. So in July I went back up to 10 mg but no more splitting the dose. I'm at 7 mg now. This is my first attempt tapering and not splitting the dose.
pmr hit me 2 months before I turned 70, I was still working. I have other medical issues that are or probably are autoimmune related.
When I was taking the 1 mg in the morning and .5 mg in the evening, I kept asking myself what was the point of taking .5 mg. I personally do not think my hand inflammation is pmr, xrays are indicating osteoarthritis and probable cppd. I did not do anything to aggrevate my hands and it is bilateral. I had this problem in 2019 but it was just my left hand.
They want me to take methotrexate. I worry about the side effects, mainly liver. I had gallbladder surgery 50 yrs ago, back when it was major surgery, had over 1000 gallstones and they did a cholangiogram in the OR to make sure the bile ducts were clear. I consider that liver related so I am saying no to methotrexate.
Life throws you a lot of curve balls, I have had my share.
suzanne

I am considering methotrexate, but wondering if I am trading one set of side effects for a worse set. I believe Prednisone has given me thin skin, which tears so easily. All of the bruises and bleeding drive me crazy, but that may be better than the side effects of the methotrexate.
On another note, the markers for me do not tell the story. The only time I feel that they did was pre-Prednisone. Since then, when I was hurting the markers were normal. I hate getting poked when it tells me nothing!

So....today I met, for the first time, with a rheumatologist in nearby Denver suburb. I liked him very much, and the visit was eye-opening. (Note: I am on 20mg prednisone, and I've split it 15/5 in order to have less painful morning wake ups.). He says this is to be adjusted and explained:
* PMR is like a campfire. It needs to be TOTALLY put out, and needs to stay out or it will smolder back and rage again.
* He says those of us who have morning pain after being on prednisone are simply not taking enough of it (not snuffing it out). He says that when we have the right amount of prednisone (for me we are trying 25 starting today) the fire ought to be out in 10 days to 2 weeks and then start weening by 2.5mg every 10 days to 2 weeks, until we determine the bottom.
* He also prescribed Alandronate, to be taken with water on an early am empty stomach once per week (to stop calcium from leeching from the bones...the drug is mainly for osteoporosis).
* He is skeptical of reports that PMR episodes comes back and thinks those reports are folks who either had extenuating circumstances (i.e another medical issue), never snuffed it out totally in the first place, or have RA.
* He doesn't like splitting dose because then prednisone remains in the body too long and affects adrenal glands

I will report back.
Ted

Very productive visit. I once asked my rheumatologist if the prednisone goal was 'no' pain or 'tolerable' pain. He said "no pain". This morning I was thinking of an analogy for splitting or not splitting the dose. I came up with the idea of something with 'roots'. Treatment needs to reach the roots or the problem will creep bsck. If your morning dose is not eliminating your pain til the next morning dose, you are likely not taking enough. I, for one, have known other medical issues, but not RA. I have been to two rhematology practices and both Drs prescribed a single morning dose of prednisone. They did not argue about my splitting the dose. At some point in tapering you need to get the single morning dose to eliminate your pain.
Do 'exceptions to the rule' apply in pmr treatment? I guess so, nothing is absolute, black or white, usually grey areas.
I hope your treatment plan works. If I had known my pmr journey was going to last as long as it has, I would have kept better records along the way. I am now keeping notes in a daily planner with BP readings, med dosing, Dr visits and pertinent medical issues. Just a suggestion. I know John, the mentor, suggests noting daily pain level.
Good Luck, suzanne

It is not easy to find the right dosage, but when you finally do you should be able to be pain free or "close enough". The problem is that most doctors are very cautious about prednisone and in my opinion are not willing to experiment enough.

I have been through three rheums so far, and none would try anything beyond 20 mg after the first successful results at 40. The last two said that if 20mg didn't work then I must not have PMR though my symptoms are "classic" PMR and 40 mg did work before the taper.

So don't give up and see if you doctor will let you try higher doses if the lower ones don't work until you get something that works, then also experiment with different tapers as well. I may take us all some time, but I think this can be beat, especially if you keep exercising as much as possible despite the pain.

I won't quibble with anything your rheumatologist said. The most important thing is that you have a good relationship with him. Hopefully he is open minded and also listens to you.

I have always had a good relationship with my rheumatologist(s). They were always in my corner and I felt they knew more than me. Sometimes I would ask questions and their answer was, "I don't know." That is an appropriate response because there are many things about PMR/GCA which aren't known.

I'm glad your rheumatologist is aware that prednisone affects the adrenal glands. I agree that you need to take enough prednisone when starting out. As it pertains to the adrenals, sometimes enough prednisone becomes too much and sometimes you need to take prednisone too long.

Extenuating circumstances are probably the norm for most of us rather than the exception.