The doctor is supposed to "manage your dose" but it depends on the doctor for how involved they are with the management. I had a doctor tell me that I could do a better job with tapering Prednisone than he could. That was after we had a good relationship established and trusted each other. We talked about tapering strategies at my visits. The prescription that was written only said "taper as directed" without any precise directions.
I followed my rheumatologist's recommendations regarding my taper. I figure he has a lot of experience working with GCA and PMR patients, and his plan has worked out well for me. He was a little conservative with my taper, but that was because I had serious vision problems when I was first diagnosed. I haven't had any pain, flares, or adrenal problems since I started treatment a year ago.
But it depends on the doctor. If the doctor is in too big a hurry to get you off prednisone, that can cause problems for the patient.
One of the things that helped me and I think also has helped others is keeping a daily journal/log of your level of pain when you get up in the morning and dosage for the day. Do you keep a daily log?
I followed my rheumatologist's recommendations regarding my taper. I figure he has a lot of experience working with GCA and PMR patients, and his plan has worked out well for me. He was a little conservative with my taper, but that was because I had serious vision problems when I was first diagnosed. I haven't had any pain, flares, or adrenal problems since I started treatment a year ago.
But it depends on the doctor. If the doctor is in too big a hurry to get you off prednisone, that can cause problems for the patient.
"If the doctor is in too big a hurry to get you off prednisone, that can cause problems for the patient."
My doctor always wanted me off Prednisone as soon as possible. Being "encouraged" to taper off quickly is different from saying taper off Prednisone now --- come hell or high water. My doctors were concerned about my long term side effects from Prednisone.
My doctor waited 12 years for me to taper off Prednisone while making sure I wouldn't run out of Prednisone. I could have never tapered off without their help. There are people on the internet who "encouraged" me to take more Prednisone for "niggles of pain" because they were sure it was PMR without ever seeing me or ordering any labs or other tests. I guess they had some kind of crystal ball.
When I picked up my first prescription of prednisolone I was given a printed schedule of when to reduce and by how much. Instructions were:
"Prednisolone 15mg orally, daily for 4 weeks; then reduce daily dose by 2.5mg every 4 weeks to 10mg daily; then reduce daily dose by 1mg every 4 to 8 weeks to stop."
I wanted to get off prednisolone sooner, so shortened the times between reductions, till at 8mg some pain came back. It was then I learned about prednisone withdrawal from decreasing too quickly, and how moving too quickly to get off it can be counterproductive because it can require an increase in dose to stabilise things. That can be time wasted and result in an overall increase in the cumulative amount taken. Slowly but surely is the way.
Thank you so much. At the end of the month the doctor told me to lower my 15mg every 2 weeks by 1 mg til I see him again in 7 weeks. I will follow that unless something crazy happens in the meantime. I guess this is pretty much a "see how it goes" routine for now. A whole new world as they say in Alladin!
When I picked up my first prescription of prednisolone I was given a printed schedule of when to reduce and by how much. Instructions were:
"Prednisolone 15mg orally, daily for 4 weeks; then reduce daily dose by 2.5mg every 4 weeks to 10mg daily; then reduce daily dose by 1mg every 4 to 8 weeks to stop."
I wanted to get off prednisolone sooner, so shortened the times between reductions, till at 8mg some pain came back. It was then I learned about prednisone withdrawal from decreasing too quickly, and how moving too quickly to get off it can be counterproductive because it can require an increase in dose to stabilise things. That can be time wasted and result in an overall increase in the cumulative amount taken. Slowly but surely is the way.
In addition to what you said about the problems of tapering too quickly, I understand that tapering and then having to go back up can make it harder to taper in the future. It seems like your body starts to resist tapering.
Thank you so much. At the end of the month the doctor told me to lower my 15mg every 2 weeks by 1 mg til I see him again in 7 weeks. I will follow that unless something crazy happens in the meantime. I guess this is pretty much a "see how it goes" routine for now. A whole new world as they say in Alladin!
"I guess this is pretty much a "see how it goes" routine for now. A whole new world as they say in Alladin!"
---------------------
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.
One of the things that helped me and I think also has helped others is keeping a daily journal/log of your level of pain when you get up in the morning and dosage for the day. Do you keep a daily log?
In addition to what you said about the problems of tapering too quickly, I understand that tapering and then having to go back up can make it harder to taper in the future. It seems like your body starts to resist tapering.
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.
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The doctor is supposed to "manage your dose" but it depends on the doctor for how involved they are with the management. I had a doctor tell me that I could do a better job with tapering Prednisone than he could. That was after we had a good relationship established and trusted each other. We talked about tapering strategies at my visits. The prescription that was written only said "taper as directed" without any precise directions.
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Helpful -
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2 ReactionsI followed my rheumatologist's recommendations regarding my taper. I figure he has a lot of experience working with GCA and PMR patients, and his plan has worked out well for me. He was a little conservative with my taper, but that was because I had serious vision problems when I was first diagnosed. I haven't had any pain, flares, or adrenal problems since I started treatment a year ago.
But it depends on the doctor. If the doctor is in too big a hurry to get you off prednisone, that can cause problems for the patient.
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3 ReactionsHello @emiglino, I'd like to add my welcome to Connect along with @dadcue @jeff97 and others. I was also fortunate to have a rheumatologist that worked with me on the tapering and never pushed me on a specific schedule. One of the other discussions was started by @dadcue sums it up pretty well.
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
There are quite a few discussions on tapering off prednisone if you want to scan through them - https://connect.mayoclinic.org/search/?search=tapering+off+prednisone.
One of the things that helped me and I think also has helped others is keeping a daily journal/log of your level of pain when you get up in the morning and dosage for the day. Do you keep a daily log?
"If the doctor is in too big a hurry to get you off prednisone, that can cause problems for the patient."
My doctor always wanted me off Prednisone as soon as possible. Being "encouraged" to taper off quickly is different from saying taper off Prednisone now --- come hell or high water. My doctors were concerned about my long term side effects from Prednisone.
My doctor waited 12 years for me to taper off Prednisone while making sure I wouldn't run out of Prednisone. I could have never tapered off without their help. There are people on the internet who "encouraged" me to take more Prednisone for "niggles of pain" because they were sure it was PMR without ever seeing me or ordering any labs or other tests. I guess they had some kind of crystal ball.
-
Like -
Helpful -
Hug
1 ReactionWhen I picked up my first prescription of prednisolone I was given a printed schedule of when to reduce and by how much. Instructions were:
"Prednisolone 15mg orally, daily for 4 weeks; then reduce daily dose by 2.5mg every 4 weeks to 10mg daily; then reduce daily dose by 1mg every 4 to 8 weeks to stop."
I wanted to get off prednisolone sooner, so shortened the times between reductions, till at 8mg some pain came back. It was then I learned about prednisone withdrawal from decreasing too quickly, and how moving too quickly to get off it can be counterproductive because it can require an increase in dose to stabilise things. That can be time wasted and result in an overall increase in the cumulative amount taken. Slowly but surely is the way.
-
Like -
Helpful -
Hug
4 ReactionsThank you so much. At the end of the month the doctor told me to lower my 15mg every 2 weeks by 1 mg til I see him again in 7 weeks. I will follow that unless something crazy happens in the meantime. I guess this is pretty much a "see how it goes" routine for now. A whole new world as they say in Alladin!
-
Like -
Helpful -
Hug
1 ReactionIn addition to what you said about the problems of tapering too quickly, I understand that tapering and then having to go back up can make it harder to taper in the future. It seems like your body starts to resist tapering.
-
Like -
Helpful -
Hug
1 Reaction"I guess this is pretty much a "see how it goes" routine for now. A whole new world as they say in Alladin!"
---------------------
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.
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Helpful -
Hug
2 ReactionsI do. Time, dosage and how I am feeling when I take it. Thank you so much for your insight.
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2 ReactionsHmmm, 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.
-
Like -
Helpful -
Hug
3 Reactions