What justifies an increase in prednisone?
I have been tapering for 5 months. I just started 5mg this week. Each time I have tapered after getting below 10mg I always seemed to have an adjustment period. Many times it was a week to 10 days and then I seemed to get back to my baseline. That did not mean I was totally pain free. I usually found it to be a 1 and at worse a 2 normally. It was usually only in the morning. All during this time my inflammation numbers did not go above the normal range. They stayed consistent.
Now today at my rheumatologist visit she wants me to go back up to 10mg. Her reasoning is that the prednisone should take all the discomfort away. It's not to make it manageable. I was kind of thrown for a loop. To me the increase is a step backwards in my goal of tapering off the med. Am I off base to wonder this? I've read that many of you still experience some discomfort with your dose. Is it really to completely eliminate pain only?
I stay active. I am on an anti inflammatory diet. I am staying away from gluten and limit my dairy. I am not consuming all kinds of sugar. And I don't smoke or drink. I believe all this is helping my taper. In addition, I see/talk to a Functional dietary nutritionist weekly who is helping with my PMR. I was seeing her even before I got diagnosed.
I am just not real comfortable with the jump now from 5 to 10mg because I thought I was progressing. I would really like to talk to my dr. more since I have more questions since our visit but not sure how likely I'll be successful.
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Seems a strange response to me. I can't even imagine the Dr's thinking. I was not pain free during the taper. But I understood it to be adrenal insufficiency. I think you want to be reasonably pain free before moving to fast. But not to jump back to 10mg. You want your body to get comfortable with the taper. But that has some discomfort. I found when I was at the lower doses during the taper that Alleve would help with general aches and pains. I can see a jump to 10mg if you started to have significant pain. Maybe do that for a couple days and go back to five. But I think you know what your up against. I would have as much information as you need on adrenal insufficiency or prednisone taper for your next visit.
"To me the increase is a step backwards in my goal of tapering off the med."
Based on the information you have provided, I would agree with you! However, increasing your prednisone dose when needed isn't a step backwards. The way you have described it ... increasing your dose doesn't sound necessary to me.
I don't understand the reasoning of your rheumatologist. Usually people complain that their rheumatologist "pressures" them to taper faster or to take a lower dose than they feel like they need. People usually don't feel like they are ready to decrease their dose so they need to be "encouraged" to take less. I didn't need any encouragement at all to take more prednisone. I took Prednisone for 12 years so taking more Prednisone when I "felt the need" was an easy thing to do.
I never felt pressure from my rheumatologist but she had a way of encouraging me to take the least amount of prednisone possible. My rheumatologist never said I should be "pain free." My rheumatologist let me decide how much discomfort I could tolerate. We never had too many conflicts because we both had the same goal. I wanted to be off prednisone as much as she wanted me to be off prednisone.
I don't ever remember being told to increase my prednisone dose under the circumstances you have described.
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"Her reasoning is that the prednisone should take all the discomfort away. It's not to make it manageable."
If this is the reasoning ... nobody would decrease their dose.
In my opinion, the whole process of tapering prednisone causes discomfort. If your rheumatologist's reasoning is correct, I would still be taking prednisone. According to my endocrinologist --- if my discomfort wasn't being caused by PMR it most assuredly was being caused by adrenal insufficiency since I was on Prednisone for a very long time.
The week or 10 days of adjustment aches after each reduction is fairly usual, going by my own experience and what many other people here have said. You say your inflammation markers aren't elevated - good - and your adjustment aches haven't got worse, so it doesn't make any sense to me to increase your prednisone dose. Unless...your doctor thinks your aches are getting worse and is trying to avoid a flare?
If your doctor wants you to have no pain at all, mostly the ones here who have no pain at all are those who split their dose with the main part of it in the morning and a small evening dose. (Some even take the whole lot in the evening or during the night, but that can cause sleeplessness for some). But that's not what your doctor is proposing, so I'm as puzzled as you are as to why she wants you to go up again. Ask questions, and let her explain her reasons. I'd be interested in hearing them too.
My doc has navigated me thru this process, starting with an appointment every month, including blood tests. After 7 months, I’m tapering, now at 4 mg of prednisone but with 400 mg of Plaquenil. Going down 2 mg of prednisone per month. Not pain, but a little stiffness in the legs and shoulders. During my last visit he told me that the pain/stiffness will probably never go away 100% and that I will be on the Plaquenil for a long time, maybe forever. However, he says there are a lot of benefits of Plaquenil. I know it’s a RA drug, but he believes there is a connection between PMR and RA, or one is a derivation of the other.
The PMR is not limiting me in any way, the stiffness is not debilitating, just a small bother. At 76 other pains are worse, like the arthroscopy on my knees, the rotator cuff tears,etc. The prednisone was masking those old injuries but now that I’m getting off the prednisone my old pains are coming back. But the side effects of prednisone are worse. As one my doctor friends told me, the PMR won’t kill you but the Prednisone will.
Jumping back to 10 mg from 5 seems like panic, why start over. Common sense goes a long way in this world!
My mother was a nurse, my wife is a nurse, my shooting/fishing/golf buddies are all doctors. If there’s one thing I’ve learned, it’s that medicine is as much an art as it is a science. I question most of what they say, believe half of it and research any orders before following them. Not that they believe it, but they are human and most are set in their ways, what they learned in med school, no matter how long ago, is the only way to treat a condition.
Enough of my opinion, good luck to all of you.
@andirae, I also agree with @dadcue, @tuckerp and @megz. My PMR is in remission now but I've dealt with it twice and my tapering experiences both times had me living with a small level of aches and pains in the morning before I took my daily dose. The best thing my Mayo rheumatologist ever did for me was to explain the tapering and the difference between pain and pain that I could live with. That was why he suggested that I keep a daily log of my dosage and level of pain when I first got up in the morning. I rated my level of pain between 0 and 10 each morning. A pain level of 2 or less was my can live with pain level. So if it was greater than 2 and it was time to taper, I held off for a few days or increase the dose by half of the previous taper so as not to go all the way back to the previous dosage.
It sounds like you have already made changes in your lifestyle and eating to help the process along which is great. If it were me, I would have the same questions and definitely not want to go back to the previous dose. I never tried splitting my dose but if my PMR raises it's ugly head again, I think of splitting the dose as another tool in my tool bag for treating PMR.
Agreeing with assessments by tuckerp and DadCue.
If your ESR and CRP are in the normal range, your PMR is most probably in remission. At that point, arbitrarily increasing prednisone to treat pain other than PMR is very questionable, especially an increase of 5.
You did not state your taper rate, but it appears to be 1 per month. Sounds appropriate. Below 5, you might consider 0.5 per month.
If your markers are in the normal range, ask your rheumy what she is attempting to treat with an increased dose. Best of luck.
My doctor also seems to think prednisone should take ALL the pain away. In fact, he said he doubts my diagnosis because of lingering pain. I explained the pain starts after about 16- 18 hours since my last dose so pain is tolerable. . Plus I’m in bed as I take 4 am dose. Hurts only when I move usually. Some muscle burning at times but infrequent. Diet has huge influence.
My ‘inflammation’ markers are also normal so I have A-Typical PMR. I actually suggested he read some of the comments in this platform then he’d get a better cross section of PMR patients. We are all different in many ways, but similar in many ways also. Invaluable advice and info always. Thank you everyone.
I've been told that the rule of thumb is that things like soreness, stiffness and burning from exercise are fine, pain is not. I was also told that people feel so good on higher doses of prednisone that they expect that to continue when they taper, but that's not realistic. Especially since tapering also exposes non-PMR issues, which for the most part existed before I became ill. So I treat those as separate problems.
I've had significant improvement in my knees with acupuncture, even while my upper arms remain stubbornly problematic at times. I'm finding that my first week of tapering to 8 MG has had a longer adjustment period than previous tapers, but I basically don't worry about a reasonable amount of extra discomfort after tapering, and so far waiting things out has worked, knock on wood. I probably don't help myself by wanting to do too much the second I feel better though... I end up seesawing between too much and too little activity.
Anyway I basically see it as a balance between acceptable discomfort and real setbacks. The expectation of no pain at all makes zero sense to me.
Would it be possible for you to seek out a second opinion?
I’d love to but not sure where.
Keep us posted. I've tapered since December from 20mg to 7mg. I've done it by .5mg at a 2 week (or so) interval.
For the last 2 weeks, my fatigue has returned and I'm achey. I can feel PMR lurking. I don't want to go back up so I won't taper next week either.
I don't see my Rheumatologist for another 3 weeks.
Good luck!