During first five months of my PMR/GCA journey, I followed my rheumatologist's tapering schedule. In December 2024, I had a flare during the holidays and I took it upon myself to increase my prednisone. First, I increased by 3 mg., then 5, when I wasn't getting any relief. I have learned through this forum, that there is no right or wrong tapering schedule. It's dependent on the individual. I consulted with my rheumatologist when I wanted to adjust my dosage to suit my symptoms. She had no problem with me taking control of my taper.
Hmmm, I wonder if some people develop a tolerance for prednisone, or maybe a physical dependence on it?
I wish I'd bookmarked it, but there was some research done that showed people who controlled inflammation consistently had more success at reducing and getting off prednisone. Consistent disease control seemed to be the key. It makes sense that repeated flares and the return of inflammation could make it harder to get off prednisone. The one inflammation/pain flare I had last year felt like a huge setback and kicked off a few other nasty things - thrombosis, Morton's Neuroma, trigger finger, upper leg nerve pain etc. So I'm not in a hurry to get off prednisone any more, just happy to reduce slowly and surely while hopefully avoiding the return of inflammation.
"The one inflammation/pain flare I had last year felt like a huge setback and kicked off a few other nasty things - thrombosis, Morton's Neuroma, trigger finger, upper leg nerve pain etc."
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That is a relatively short list compared to the other nasty things that happened to me. My list of medical complications expanded exponentially when I was on Prednisone for 12 years. Gone were the days when I could go from 60 mg to zero in a month to treat other autoimmune disorders that were diagnosed prior to PMR.
I needed a lot of Prednisone for a very long time after PMR was diagnosed. I was always amazed how my symptoms from the other nasty things were nothing like how PMR presented originally. PMR originally presented with my inability to lift my arms without extreme pain. There was widespread pain and stiffness everywhere else but I was mostly focused on the shoulder pain. I was always skeptical that all the other things were all because of PMR.
For the question of tolerance, dependence and addiction to Prednisone ... I think they are all possible. However everything I have read says the following.
Addiction: Prednisone is generally not considered addictive in the traditional sense.
Physical Dependence: Common with long-term use, requiring a gradual taper to avoid withdrawal symptoms.
Tolerance: Less common with prednisone, and often linked to the underlying condition rather than the drug itself.
I do give prednisone credit for me not being addictive to other pain medications. I still remember a neurosurgeon questioning me about what pain medications I took for trigeminal neuralgia. He didn't see any pain medications on my list of medications. The surgeon said people usually presented with a mile long list of pain medications. The surgeon was astonished when I told him "just Prednisone" was all I took for pain.
"The one inflammation/pain flare I had last year felt like a huge setback and kicked off a few other nasty things - thrombosis, Morton's Neuroma, trigger finger, upper leg nerve pain etc."
-----------------------
That is a relatively short list compared to the other nasty things that happened to me. My list of medical complications expanded exponentially when I was on Prednisone for 12 years. Gone were the days when I could go from 60 mg to zero in a month to treat other autoimmune disorders that were diagnosed prior to PMR.
I needed a lot of Prednisone for a very long time after PMR was diagnosed. I was always amazed how my symptoms from the other nasty things were nothing like how PMR presented originally. PMR originally presented with my inability to lift my arms without extreme pain. There was widespread pain and stiffness everywhere else but I was mostly focused on the shoulder pain. I was always skeptical that all the other things were all because of PMR.
For the question of tolerance, dependence and addiction to Prednisone ... I think they are all possible. However everything I have read says the following.
Addiction: Prednisone is generally not considered addictive in the traditional sense.
Physical Dependence: Common with long-term use, requiring a gradual taper to avoid withdrawal symptoms.
Tolerance: Less common with prednisone, and often linked to the underlying condition rather than the drug itself.
I do give prednisone credit for me not being addictive to other pain medications. I still remember a neurosurgeon questioning me about what pain medications I took for trigeminal neuralgia. He didn't see any pain medications on my list of medications. The surgeon said people usually presented with a mile long list of pain medications. The surgeon was astonished when I told him "just Prednisone" was all I took for pain.
I'd never try to compete with you for the longest list of subsidiary ailments, but did you notice the "etc" at the end of my list? 😉 The sudden onset of those new ailments immediately followed the flare, so I attribute them to increased inflammation rather than PMR or prednisone. Chronic or excessive inflammation is damaging, with or without PMR.
I'd never try to compete with you for the longest list of subsidiary ailments, but did you notice the "etc" at the end of my list? 😉 The sudden onset of those new ailments immediately followed the flare, so I attribute them to increased inflammation rather than PMR or prednisone. Chronic or excessive inflammation is damaging, with or without PMR.
Chronic systemic inflammation was how my rheumatologist described everything. My electronic medical records document every correspondence we had over the years. One time I tried to pin her down to get her to say exactly what diagnosis I had. This was how she responded to me. She only addressed my main concerns.
---------------------
"Dx: PMR with a history of reactive arthritis.
Prednisone does not protect your lumbar spine. If anything, due to increased risk for osteoporosis, it actually threatens your lumbar spine.
Adrenal insufficiency: There is no rocket science for the issue of adrenal insufficiency--it just means we need to taper carefully.
Our treatment goal was to do slow taper to get you to 5 mg/day then just keep you there for a while. Suggest tapering by 0.5 to 1 mg per month. Goal is to get to 5 mg/day if possible, then hold there.
Let me know if you hit any snags before you reach 5 mg/day."
-------------------
This conversation predated Actemra by a year or so.
"I guess this is pretty much a "see how it goes" routine for now. A whole new world as they say in Alladin!"
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That pretty much sums it up. I only know that I was in a PMR world of pain. It was like a magic carpet ride from one pain crisis to the next when I was on Prednisone.
Since starting Actemra, I had a rough time getting off prednisone. Somehow I had a soft landing and survived the whole ordeal. Now I have successfully tapered off Prednisone. I'm not sure what world I'm in now but the place is a much more pleasant world than the other places I have been.
I have been on prednisone for PMR and now the added diagnosis of GCA for almost 4 years. Initially I was given a schedule by the doctor for prednisone reduction. Below 10 mg I just couldn't follow it. He wanted me to drop from 10 to 7.5 and that was too much. So I ended up bouncing up and down between 8 and 10 for quite awhile trying to reduce. It seemed like I was always taking trips to the pharmacy because he would only give me a prescription for 1 month for 2 different strengths that renewed at different times. Over time he has trusted me more to handle the reductions with general guidance from him. I get 3 month prescriptions for 5mg and 1 mg that renew together. It's been quite an up and down journey with three different steroid-sparing medications being added. I don't really know if I can reduce until I try. I go in .5 mg steps, with at least 3 weeks between attempts, usually 4. If symptoms increase and then worsen on the lower dose I go back up within 5 days or less. Toughing it out doesn't work for me. Symptoms just worsen.
At my yearly physical checkup, my PCP said it’s time to get off prednisone. I was diagnosed early Dec 2024. I was at 3mg when I saw her. She gave me a schedule of 1wk/2mg, 1wk/1mg then done. It sounds fast to me but I’ve stuck with it so far. I have some pain but it’s not debilitating and I will try taking Tylenol if it gets worse. Seems like it is an aggressive taper schedule but just keeping my fingers crossed. Such an unpredictable disease.
During first five months of my PMR/GCA journey, I followed my rheumatologist's tapering schedule. In December 2024, I had a flare during the holidays and I took it upon myself to increase my prednisone. First, I increased by 3 mg., then 5, when I wasn't getting any relief. I have learned through this forum, that there is no right or wrong tapering schedule. It's dependent on the individual. I consulted with my rheumatologist when I wanted to adjust my dosage to suit my symptoms. She had no problem with me taking control of my taper.
I have a question for anyone to answer with their opinion.
I started on prednisone last Sept. 20mg, tapering 2.5 every 30 days. I was responding very well. until I dropped to 7.5.
I found through the forum, that after 10 I should be dropping 1mg per 30 days. My rheumatologist at that time flatly refused to give me a presciption other then 5mg.
I went back to my general MD and was able to get 1mg's. I have been good dropping by 1mg until I got to 6. Symptoms came back immetiatly and very strong. I went back to 7. Symptoms didn't reduce by much. Went to 8 for the last 4 days. The symptoms have been better, but are still quite strong. Shoulder, upper arms, wrists, and a new stiffness in the fingers. I take acetaminophen to keep it at bay during the day.
Ok: my question. Should I maintain at 8mg, and see if the symptoms go away, or go on to 9mg or 10mg if needed. Once the symptoms are gone, should I go back to 1mg reducing at 30 days, or can I speed the reductions up?
I have no Doctors to confir with, as my general doesn't know to much about PMR, and I can't get into a new rheumatologist until end of August.
I have a question for anyone to answer with their opinion.
I started on prednisone last Sept. 20mg, tapering 2.5 every 30 days. I was responding very well. until I dropped to 7.5.
I found through the forum, that after 10 I should be dropping 1mg per 30 days. My rheumatologist at that time flatly refused to give me a presciption other then 5mg.
I went back to my general MD and was able to get 1mg's. I have been good dropping by 1mg until I got to 6. Symptoms came back immetiatly and very strong. I went back to 7. Symptoms didn't reduce by much. Went to 8 for the last 4 days. The symptoms have been better, but are still quite strong. Shoulder, upper arms, wrists, and a new stiffness in the fingers. I take acetaminophen to keep it at bay during the day.
Ok: my question. Should I maintain at 8mg, and see if the symptoms go away, or go on to 9mg or 10mg if needed. Once the symptoms are gone, should I go back to 1mg reducing at 30 days, or can I speed the reductions up?
I have no Doctors to confir with, as my general doesn't know to much about PMR, and I can't get into a new rheumatologist until end of August.
I would recommend you go to 10 and stay there for a couple of weeks to see if that handles your pain. That level was working for you before, so that's a good place to start. After that you can do like you suggested and drop 1 mg per month until you get down to 5. Once people get to 5, they usually drop .5 mg a month from then on, unless they're also taking a biologic drug like Kevzara or Actemra. But if you're seeing a rheumatologist in a couple of months, he or she can make a recommendation then.
Fyi, all of the different doses of prednisone pills (20, 10, 5, 2.5, and 1) that are not time released are scored on one side so that you can split the pills with a pill splitter.
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During first five months of my PMR/GCA journey, I followed my rheumatologist's tapering schedule. In December 2024, I had a flare during the holidays and I took it upon myself to increase my prednisone. First, I increased by 3 mg., then 5, when I wasn't getting any relief. I have learned through this forum, that there is no right or wrong tapering schedule. It's dependent on the individual. I consulted with my rheumatologist when I wanted to adjust my dosage to suit my symptoms. She had no problem with me taking control of my taper.
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Helpful -
Hug
1 Reaction"The one inflammation/pain flare I had last year felt like a huge setback and kicked off a few other nasty things - thrombosis, Morton's Neuroma, trigger finger, upper leg nerve pain etc."
-----------------------
That is a relatively short list compared to the other nasty things that happened to me. My list of medical complications expanded exponentially when I was on Prednisone for 12 years. Gone were the days when I could go from 60 mg to zero in a month to treat other autoimmune disorders that were diagnosed prior to PMR.
I needed a lot of Prednisone for a very long time after PMR was diagnosed. I was always amazed how my symptoms from the other nasty things were nothing like how PMR presented originally. PMR originally presented with my inability to lift my arms without extreme pain. There was widespread pain and stiffness everywhere else but I was mostly focused on the shoulder pain. I was always skeptical that all the other things were all because of PMR.
For the question of tolerance, dependence and addiction to Prednisone ... I think they are all possible. However everything I have read says the following.
Addiction: Prednisone is generally not considered addictive in the traditional sense.
Physical Dependence: Common with long-term use, requiring a gradual taper to avoid withdrawal symptoms.
Tolerance: Less common with prednisone, and often linked to the underlying condition rather than the drug itself.
I do give prednisone credit for me not being addictive to other pain medications. I still remember a neurosurgeon questioning me about what pain medications I took for trigeminal neuralgia. He didn't see any pain medications on my list of medications. The surgeon said people usually presented with a mile long list of pain medications. The surgeon was astonished when I told him "just Prednisone" was all I took for pain.
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Helpful -
Hug
1 ReactionI'd never try to compete with you for the longest list of subsidiary ailments, but did you notice the "etc" at the end of my list? 😉 The sudden onset of those new ailments immediately followed the flare, so I attribute them to increased inflammation rather than PMR or prednisone. Chronic or excessive inflammation is damaging, with or without PMR.
-
Like -
Helpful -
Hug
1 ReactionChronic systemic inflammation was how my rheumatologist described everything. My electronic medical records document every correspondence we had over the years. One time I tried to pin her down to get her to say exactly what diagnosis I had. This was how she responded to me. She only addressed my main concerns.
---------------------
"Dx: PMR with a history of reactive arthritis.
Prednisone does not protect your lumbar spine. If anything, due to increased risk for osteoporosis, it actually threatens your lumbar spine.
Adrenal insufficiency: There is no rocket science for the issue of adrenal insufficiency--it just means we need to taper carefully.
Our treatment goal was to do slow taper to get you to 5 mg/day then just keep you there for a while. Suggest tapering by 0.5 to 1 mg per month. Goal is to get to 5 mg/day if possible, then hold there.
Let me know if you hit any snags before you reach 5 mg/day."
-------------------
This conversation predated Actemra by a year or so.
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2 ReactionsMy husband asked my doctor why I got this and his answer was.....Bad Luck! I guess no one really knows why anyone gets PMR.
Glad to hear that!
I have been on prednisone for PMR and now the added diagnosis of GCA for almost 4 years. Initially I was given a schedule by the doctor for prednisone reduction. Below 10 mg I just couldn't follow it. He wanted me to drop from 10 to 7.5 and that was too much. So I ended up bouncing up and down between 8 and 10 for quite awhile trying to reduce. It seemed like I was always taking trips to the pharmacy because he would only give me a prescription for 1 month for 2 different strengths that renewed at different times. Over time he has trusted me more to handle the reductions with general guidance from him. I get 3 month prescriptions for 5mg and 1 mg that renew together. It's been quite an up and down journey with three different steroid-sparing medications being added. I don't really know if I can reduce until I try. I go in .5 mg steps, with at least 3 weeks between attempts, usually 4. If symptoms increase and then worsen on the lower dose I go back up within 5 days or less. Toughing it out doesn't work for me. Symptoms just worsen.
-
Like -
Helpful -
Hug
1 ReactionAt my yearly physical checkup, my PCP said it’s time to get off prednisone. I was diagnosed early Dec 2024. I was at 3mg when I saw her. She gave me a schedule of 1wk/2mg, 1wk/1mg then done. It sounds fast to me but I’ve stuck with it so far. I have some pain but it’s not debilitating and I will try taking Tylenol if it gets worse. Seems like it is an aggressive taper schedule but just keeping my fingers crossed. Such an unpredictable disease.
-
Like -
Helpful -
Hug
1 ReactionI have a question for anyone to answer with their opinion.
I started on prednisone last Sept. 20mg, tapering 2.5 every 30 days. I was responding very well. until I dropped to 7.5.
I found through the forum, that after 10 I should be dropping 1mg per 30 days. My rheumatologist at that time flatly refused to give me a presciption other then 5mg.
I went back to my general MD and was able to get 1mg's. I have been good dropping by 1mg until I got to 6. Symptoms came back immetiatly and very strong. I went back to 7. Symptoms didn't reduce by much. Went to 8 for the last 4 days. The symptoms have been better, but are still quite strong. Shoulder, upper arms, wrists, and a new stiffness in the fingers. I take acetaminophen to keep it at bay during the day.
Ok: my question. Should I maintain at 8mg, and see if the symptoms go away, or go on to 9mg or 10mg if needed. Once the symptoms are gone, should I go back to 1mg reducing at 30 days, or can I speed the reductions up?
I have no Doctors to confir with, as my general doesn't know to much about PMR, and I can't get into a new rheumatologist until end of August.
I would recommend you go to 10 and stay there for a couple of weeks to see if that handles your pain. That level was working for you before, so that's a good place to start. After that you can do like you suggested and drop 1 mg per month until you get down to 5. Once people get to 5, they usually drop .5 mg a month from then on, unless they're also taking a biologic drug like Kevzara or Actemra. But if you're seeing a rheumatologist in a couple of months, he or she can make a recommendation then.
Fyi, all of the different doses of prednisone pills (20, 10, 5, 2.5, and 1) that are not time released are scored on one side so that you can split the pills with a pill splitter.
-
Like -
Helpful -
Hug
3 Reactions