Post prednisone

@dadcue. Thank you for explaining more fully your uveitis journey. I think it’s so critical to be attuned with your body to the extent that you are. I know that works for me as well. Being aware to how medication is affecting your symptoms is also essential. Is uveitis a recurring issue, or autoimmune or a day to day condition? It sounds like you have an excellent ophthalmologist which is also critical. Like a lot of people I live in an area that has several reputable sources for ranking doctors. I start with Health Grades which is online and then I check local reviews and recommendations. I cross reference the best doctors with doctors covered in my medical plan. I remember selecting a doctor as the winner of my research for a condition years ago, and he didn’t accept insurance period. But most of the time my system has worked well for me.

https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/uveitis#:~:text=Uveitis%20is%20inflammation%20inside%20your,healthy%20tissue%20in%20your%20eyes.
My uveitis was always the autoimmune kind. It was rapid onset and recurred every year or so for some unknown reason. My uveitis was usually "aggressive" but not always. My flares could be full blown in a matter of a few hours.

Fortunately my uveitis always responded to a high dose of prednisone followed by a fast taper . I frequently did 60 mg of prednisone back to zero again in a month without any problems

Uveitis can also be "smoldering" and chronic. Low amounts of inflammation that is usually controlled by steroid eye drops or a very low dose of prednisone.

My uveitis is probably genetic but what triggers the flares is unknown. My genes probably predispose me to other autoimmune disorders. I have several autoimmune disorders including PMR. I have needed a lot of prednisone since I was first diagnosed with uveitis almost 40 years ago.

I'm now completely off prednisone and treated with a biologic that works well.

Hello @nyxygirl .
I've not split doses so far. I do notice mild, classic PMR symptoms occasionally, usually related to the exertion the day before or the first week or so on the new lower dose-which I guess could be considered mild withdrawl? I always take my meds between 7-8am. I also break a 500 mg tylenol in half and take that as well.
Best wishes on your progress.
Ernie

Good morning. I am off prednisone entirely for 6 weeks and so far no problems. I also discontinued Kevzara entirely after my last shot 3 weeks ago. If I have a flare that will be my go to. I feel just fine at 82 and am praying that feeling good continues.
Hang in there.

hi @cazwell50 can i get your input about 1) what time of day did you take your lower and lower doses ? 2) did you {ever} split the dose ?

oopsy i forgot to mention above that i now i am still splitting dose 2mg in morning and 3 mg in evening -but i want to move it from 4-5pm to 7pm.

Hi @nxgirl,

I always took mine in the morning.

To Shannonjp and others
I was on the prednisone for 6 months. I just finished tapering and have been off it for about 3 weeks. A week ago I began to feel some stiffness and aches in my lower back, shoulders and knees returning. Now after another week I’m noticing the aches are getting a little more painful. I also have osteoporosis and was reluctant to take the prednisone and anxious to get off it as well. I have bloodwork scheduled next week to test inflammation markers but I am hoping my Rheumatologist doesn’t suggest going back on.
I read some of the other comments responding to your question and they were helpful and encouraging.
I hope and pray for healing for everyone and will continue to reach out and give support.
Thank you all so much.

@fam8284. I can relate to the pain you’re experiencing. I’m 79 and took prednisone for 9 months before tapering. There will definitely be pain post prednisone. And sometimes it feels like it’s getting worse. I used the measurement of ‘is this as bad as what I felt at the beginning of having PMR?’ Usually the answer was no, but there were times I wanted to schedule an appt to see if I needed to go back on prednisone, then the pain would lessen some. I alternated taking ibuprofen and acetaminophen every few days, and gradually I was taking them less often. I hope you’re not flaring but if your inflammation markers are high, it is what it is. You likely won’t be back on for long and your second taper will likely be more successful. Be patient, there is an end in sight. Be in good health.

"I used the measurement of ‘is this as bad as what I felt at the beginning of having PMR?’ Usually the answer was no, but there were times I wanted to schedule an appt to see if I needed to go back on prednisone, then the pain would lessen some."

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I used to do this too except I used it for deciding what dose of prednisone I should take.

There was also a "survivability" aspect to whatever was the latest onset of pain. It was somewhat reassuring to me when I could say "it has hurt worse before and I survived."

My whole experience with a variety of autoimmune difficulties has built up my tolerance level for pain. Little stuff isn't so concerning anymore. I don't expect to be pain free ever again. Presently, it is probably "as good as it gets" and I'm off prednisone.

Thanks so much for explaining your experience. It helps to know what to expect. For me when the stiffness and aches first began it was tolerable. As time went on it got worse. So at the peak of the PMR it was really bad and limiting my mobility. It took months for my primary to send me to a Rheumatologist. So if I compare my pain level now it’s more like the beginning of what I experienced before I even knew it was PMR. So I’ll see what the lab results are and hoping for the best. Thanks again so much for sharing it is helpful and encouraging.