PMR - Decreased prednisone and pain returned

Posted by alan bruce @alanbruce, Dec 29, 2018

I was at 2mg for 6 weeks of prednisone and decided go down to 1 1/2 and after 2 weeks I started to have pain in my shoulders. Will 1/2 a mg make a that sort of difference. I have been on prednisone for 18 months and have gone up and down before… Any recommendation on what to increase the predisone to.

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@aspine

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.

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Thanks for sharing.

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@doloresmacneil

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.

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Gratitude

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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.

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@guillamocan

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.

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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

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@sashakay

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

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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 💞🇨🇦💞

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@sloped483

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?

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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.

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@milld835

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.

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Hi, milld835,
I can't imagine your disappointment. To wait so long to get in there and then to be treated like that. I agree – you need to shop for a new rheumy again. I did too, and I'm really glad I did. Good luck!

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@sashakay

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 💞🇨🇦💞

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I was a very active 73 yr young I have had pmr now for a year and had a flare up in December and it has taken me 6 months to get back to 8 mgs. I golf and ski and have no plans to give this up. I know the goal is to get off prednisone but quality of life is more important to me. You need to take enough prednisone to keep the inflammation at bay if not it builds up then flares I am now reducing .5 mg every 4 weeks and soon will go to dead slow nearly stop taper. When I am depressed I remember that I didn’t have a bad stroke, heart attack or cancer and that this disease is treatable and the drug is cheap. I lost my wife suddenly 11 years ago. I just want to enjoy my time left. All the best and hang in there,

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@milld835

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.

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So sorry that on top of everything else, you had a bad experience with your rheumatologist. Mine is so young, I refer to him as Doogie Howser, MD! I initially told him that I had learned so much from this forum, and I think he appreciates that I don't waste his time asking the obvious. At my first appointment with him in February of this year I had tapered down to 9mg of prednisone and am now sitting at 5mg for the next two months. I have all the usual stiffness in my arms, hands and pelvic girdle first thing in the morning, but no pain. Sometimes the need to take naps is a nuisance, but I have learned to embrace it and also to pace myself during the day. After a lifetime (I'm 75) of being a high energy person and not retiring from a very active career until I was 70, I was frustrated at first, but now I count my blessings that PMR is not life threatening, and I will get through this. Good luck with finding a "rheumie" who is more empathetic and will listen to you. In my family we always say that your present doctor is the way she is because she doesn't get enough love!

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I've been slowly tapering off Prednisone and down to 4 mg and thinking about increasing it a little again. I'm having trouble getting out of bed in the morning. The body doesn't like moving. I force myself to go to a 6:45 water aerobics class, but I feel so much better after I do. I really want to get off the Prednisone because I've had so many of the side effects of the medication and want them gone, so I'm putting up with the pain as much as possible. I see my Rheumatologist later this month to check on the inflammation markers and hopefully the numbers will be low.

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@annettetompkins

So sorry that on top of everything else, you had a bad experience with your rheumatologist. Mine is so young, I refer to him as Doogie Howser, MD! I initially told him that I had learned so much from this forum, and I think he appreciates that I don't waste his time asking the obvious. At my first appointment with him in February of this year I had tapered down to 9mg of prednisone and am now sitting at 5mg for the next two months. I have all the usual stiffness in my arms, hands and pelvic girdle first thing in the morning, but no pain. Sometimes the need to take naps is a nuisance, but I have learned to embrace it and also to pace myself during the day. After a lifetime (I'm 75) of being a high energy person and not retiring from a very active career until I was 70, I was frustrated at first, but now I count my blessings that PMR is not life threatening, and I will get through this. Good luck with finding a "rheumie" who is more empathetic and will listen to you. In my family we always say that your present doctor is the way she is because she doesn't get enough love!

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I agree. 72 and still working part-time. Was full time until the PMR kicked in full blast last October. Fortunately, I don't work in the afternoons, so power nap fits in well. I dropped down to 12.5mg yesterday and feeling the impact of it today (my day off). Fell to sleep at 10:30 this morning and woke up after 12:30. The get up and go got up and went. I did manage to get my laundry out on the line prior to the "nap". I could have another nap now and it's 3:15. I'm not looking for empathy in a Rheumatologist really, although I think it should be within her scope to exercise a little. My problem was that everytime I tried to talk, she talked over me with an already-formulated answer to a question I was not asking. Maybe I should have a cup of coffee for an energy boost, which is what she suggested and I don't think it was tongue-in-cheek. Maybe her ''sense of humour" escapes me. 😉 Just seeing how this tapering goes, one day at a time. Ditto on the truly grateful PMR is not life threatening and that at 72 I'm still able to work and keep up with the young'uns. Cheers!

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@aspine

Hi, milld835,
I can't imagine your disappointment. To wait so long to get in there and then to be treated like that. I agree – you need to shop for a new rheumy again. I did too, and I'm really glad I did. Good luck!

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Find someone new. yes I have jaw pain. It was sever enough that I went to a cardiologist to make sure. It comes and goes just like the pain in the arms and legs and low back, and neck. I have been at 4 mgs for a while, but had to do a prednisone taper with the covid vaccines, just so I could walk and not look like a duck.

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