PMR - Decreased prednisone and pain returned

You shouldn't have to be suffering those "knifepoint lightning burns". You should be proactive in tapering - not reactive. But there are smart ways to do that, and the plans in that site give you lots of options to figure out what works for you - without pain. Pain is inflammation, and that's what the pred is meant to get rid of. But you should be in control of your body. Not the prednisone and not the PMR. Good luck.

Thank you. I appreciate evidenced based sites as well as this supportive community group.
My tapering doses continue to be adjusted when my trigger points become rotating knifepoint lightning burns.

The general advice I've seen is to increase the prednisone to the level where you didn't have symptoms. Yes, the decrease from 2 mg to 1.5 mg seems like a small amount. But, in relative terms this is a 25% reduction from the 2 mg dosage. Its the same relative difference as going from 25 mg to 20 mg. Maybe, the body is reacting to that relative change. One of the strategies I've seen is to alternate the 2 mg with the 1.5 mg dosage and then slowly wean down. One rheumatologist recommended a very slow schedule like: 1st week Mon - 2 mg. Tues - 2 mg Wed 1.5 mg Thur - 2 mg Fri. - 2 mg Sat - 2 mg - Sun - 2mg. 2nd week Mon - 2 mg. Tues - 2 mg Wed 1.5 mg Thur - 2 mg Fri. - 1.5 mg Sat - 2 mg - Sun - 2mg. 3rd week - 4 days with 2 mg and 3 days with 1.5 mg. And then you could do the same schedule going down from 1.5 mg. This was in Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition". Hope this helps and good luck.

this is the protocol which has worked well for me. It does take a considerable amount of weaning time, and patience with yourself, but for me, so far so good. It has taken me quite a while to reduce from 7 mg - 7/6/ for 4 weeks 6/6 for 4 wks, 6/5 and so on. Now at 4 mg for another 2 weeks. This is my 3 rd round of PMR each one 11 years apart. But by far this is the most challenging one to wean down. At 4 mg I am experiencing mood shifts, de-personalization, crying jags and restlessness. No pain and amazingly low CRP number 2.7! My philosophy is that if I have to go back to 5mg and then have to stay on that indefinitely, that's what my individual body needs. the goal for me is to lead a full, and conscious lifestyle - Joy is my goal lol

Have any of you been diagnosed with GSA since you all have/had experienced jaw pain, which jaw pain is one of the main symptoms of GSA?

The Rheumatologist was as her reviews depicted her. My approach was to go in with an open mind. But...I have never met such a condescending doctor. I told her about the tapering and I felt the Neurologist's schedule of down 1 mg Prednisone every week was a bit aggressive considering my pain returns at 13.75 mg. I tried to tell her my symptoms but she just kept talking over me. When I told her I was tired, shaky and legs were weak, she said "drink more coffee, because fatigue is part of PMR". I only drink one coffee per day. Also when I told her my symptoms began with the first Covid jab and inflammation hit the roof with the second jab, she said, "well maybe you were just meant to get PMR". Possibly, but of everything that does run in my family, PMR, Arthritis or any related auto-immune diseases do not. When I told her initially I could not move my arms downward and back, she asked if I could put them over my head. I always could put them over my head. So she asked me to put my arms over my head, which of course, was no problem, nor is putting them back and down at this stage. Further, she completely changed the tapering schedule and insisted I drop to 12.5 mg immediately. That's today. To stay at that for a month and then down another mg going forward each month. My next "appointment" with her is in 4 months and "we'll see how you're doing on this weaning schedule". I'm like are you kidding me right now? She was an hour late for the appointment, which I could handle. It seemed like she rushed through it, and couldn't wait for me to finish what I was saying, so she interrupted. She did order repeat blood work monthly (a good thing) and also a bone density scan (months of a waitlist). Also a Rx for osteoporosis preventative. So I came out with many unanswered questions. She poo-poo'd the jaw pain and was pretty sure I don't have GCA as jaw pain was on both sides, rather than just one and the CRP was low. I told her about neck pain in the mornings and a bad head ache and she said it's probably pain returning from before the PMR even began, because I had laid off my CBD oil (which I cannot take with Prednisone as it wigs me right out). I think in the 4 months, I will probably shop around for another Rheumatologist, after waiting 5 months to see this one. Very disppointed, although I think the monitoring process and the weaning process at this point are up to me. It is said she is very difficult to reach and does not return calls. Hopefully, I won't have to call her. Took 12.5 mg. Prednisone this morning (down from 14) and this afternoon, I am wiped out. Sorry for the meandering post, but mostly venting. Thanks for your input, opinions and just for being here and listening.

Omg I just reread my post! I thought I sounded very flippant and somewhat arrogant with my last comment about staying on prednisone indefinitely. Yes, ultimately my reason for living at this point in my life (78) is to live within the opportunities and “limitations” of my physical body. My response to that is the one thing I have a choice on - hence seeking Joy 🤩. This 3rd time with PMR has been a tough pill to swallow, and I am determined not to have this closing chapter filled with bitterness and fear. Some days are super, others not so much….but this group gives me courage knowing that there is no judgement just support and encouragement. Thank you guys for being there 💞🇨🇦💞

The Rheumatologist was as her reviews depicted her. My approach was to go in with an open mind. But...I have never met such a condescending doctor. I told her about the tapering and I felt the Neurologist's schedule of down 1 mg Prednisone every week was a bit aggressive considering my pain returns at 13.75 mg. I tried to tell her my symptoms but she just kept talking over me. When I told her I was tired, shaky and legs were weak, she said "drink more coffee, because fatigue is part of PMR". I only drink one coffee per day. Also when I told her my symptoms began with the first Covid jab and inflammation hit the roof with the second jab, she said, "well maybe you were just meant to get PMR". Possibly, but of everything that does run in my family, PMR, Arthritis or any related auto-immune diseases do not. When I told her initially I could not move my arms downward and back, she asked if I could put them over my head. I always could put them over my head. So she asked me to put my arms over my head, which of course, was no problem, nor is putting them back and down at this stage. Further, she completely changed the tapering schedule and insisted I drop to 12.5 mg immediately. That's today. To stay at that for a month and then down another mg going forward each month. My next "appointment" with her is in 4 months and "we'll see how you're doing on this weaning schedule". I'm like are you kidding me right now? She was an hour late for the appointment, which I could handle. It seemed like she rushed through it, and couldn't wait for me to finish what I was saying, so she interrupted. She did order repeat blood work monthly (a good thing) and also a bone density scan (months of a waitlist). Also a Rx for osteoporosis preventative. So I came out with many unanswered questions. She poo-poo'd the jaw pain and was pretty sure I don't have GCA as jaw pain was on both sides, rather than just one and the CRP was low. I told her about neck pain in the mornings and a bad head ache and she said it's probably pain returning from before the PMR even began, because I had laid off my CBD oil (which I cannot take with Prednisone as it wigs me right out). I think in the 4 months, I will probably shop around for another Rheumatologist, after waiting 5 months to see this one. Very disppointed, although I think the monitoring process and the weaning process at this point are up to me. It is said she is very difficult to reach and does not return calls. Hopefully, I won't have to call her. Took 12.5 mg. Prednisone this morning (down from 14) and this afternoon, I am wiped out. Sorry for the meandering post, but mostly venting. Thanks for your input, opinions and just for being here and listening.