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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Jan 27 8:38am | Replies (1879)Comment receiving replies
Did your symptoms get worse when you decreased from 20 mg to 15 mg?
My rheumatologist wanted me to be on a "stable dose" of prednisone and not make too many changes. It wasn't so much about day to day changes in my symptoms but my overall symptoms from one week to the next.
My rheumatologist preferred that I didn't make any dose change for at least a month most of the time. Whenever you change your dose you need to give it a chance to work. Your body needs time to adjust to the new dose. You will likely feel your symptoms get worse while your body is trying to adjust to a lower dose. I have to admit the instant gratification of a higher dose is hard to resist.
A rapid change is symptoms while on a stable dose of prednisone is referred to as a "flare." This is when your symptoms are noticeably worse several days in a row. Ideally you would report that to your doctor before increasing your dose.
Your rheumatologist might want you to stop prednisone altogether just to see what symptoms you have when you aren't taking prednisone. Stopping prednisone with active PMR can be a painful experience. It is probably necessary for an accurate evaluation of your symptoms which might provide a more accurate diagnosis.
I haven't had any problems with my Moderna vaccine and boosters. I do tend to have problems with flu vaccines and vaccines in general. I'm not an anti-vax person but I avoid all vaccines as much as possible. I don't like it when something revs up my immune system ... it usually is too "revved up" and "overactive" and needs to be regulated better. I need something to calm my immune system down. Generally speaking, I'm a calm person and I like to chill out as much as I can.
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My symptoms remained stable generally for the 2-3 days after lowering my dosage from 20 to 15. The main thing I noticed during this time was that I was noticeably light-headed much of the day. What was odd was that, while I felt like I wanted to take a nap all day, I felt probably a little more alert somehow. I felt wiped out but my focus somehow seemed slightly better.
This weekend generally went well. My symptoms seemed subtly milder in days 2-3 after my yardwork on Thursday, and I did more casual yardwork with my wife yesterday.
Unfortunately, I had a lot of trouble getting out of bed this morning, and struggled to get out of a chair on my first try, and had to work from home today. I was in slippers all day until about an hour ago, when I felt flexible enough to try putting on real shoes.
As usual, I've gradually felt better as the day has progressed but still not where I was this past weekend. I'm not sure what to make of it. I generally feel about the same as I did this time last week, but have definitely gone backwards from 2-3 days ago.
At this point, I'd be terrified of being off prednisone. I trust in my doctor, but I'm wondering if it's possible that my initial dose was not strong enough. I'm supposed to go from 15 to 10 for 4-5 weeks after next Tuesday. Hopefully, the extended treatment kills off the symptoms slowly, and I just need to be patient.