1. < Polymyalgia Rheumatica (PMR)

What justifies an increase in prednisone?

Posted by andirae @andirae, Jul 31 8:07pm

I have been tapering for 5 months. I just started 5mg this week. Each time I have tapered after getting below 10mg I always seemed to have an adjustment period. Many times it was a week to 10 days and then I seemed to get back to my baseline. That did not mean I was totally pain free. I usually found it to be a 1 and at worse a 2 normally. It was usually only in the morning. All during this time my inflammation numbers did not go above the normal range. They stayed consistent.
Now today at my rheumatologist visit she wants me to go back up to 10mg. Her reasoning is that the prednisone should take all the discomfort away. It's not to make it manageable. I was kind of thrown for a loop. To me the increase is a step backwards in my goal of tapering off the med. Am I off base to wonder this? I've read that many of you still experience some discomfort with your dose. Is it really to completely eliminate pain only?
I stay active. I am on an anti inflammatory diet. I am staying away from gluten and limit my dairy. I am not consuming all kinds of sugar. And I don't smoke or drink. I believe all this is helping my taper. In addition, I see/talk to a Functional dietary nutritionist weekly who is helping with my PMR. I was seeing her even before I got diagnosed.
I am just not real comfortable with the jump now from 5 to 10mg because I thought I was progressing. I would really like to talk to my dr. more since I have more questions since our visit but not sure how likely I'll be successful.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

megz | @megz | Aug 4 7:40pm
In reply to @danzster79 "@DadCue Your experience mirrors my own. I began 15 mg of Prednisone on April 15th, prescribed..." + (show)
@danzster79

@dadcue
Your experience mirrors my own. I began 15 mg of Prednisone on April 15th, prescribed by my PCP, about a week after PMR hit me hard out of nowhere. After a month I saw my rheumatologist, and after he got extensive blood work completed and my hematologist cleared me of any other issues, I was diagnosed with PMR and started to taper while receiving a monthly infusion of Actemra. I went from 15 mg to 10 mg on June 15th, then down to 7.5 mg on July 15th and down to 5 mg two weeks later. He originally wanted me to go from 10 mg to 5 mg, but I did have a tough flare 3 days after going from 15mg to 10mg, so he suggested the 7.5 mg level for two weeks, and then drop to 5 mg. He indicated that putting me on Actemra not only assists in my tapering but would help ensure I didn't migrate to GCA. I've had some minor increases in body pain during this time, but just "aches" at level 1 or 2, not the level 8 to 10 pain I was suffering during the first couple weeks of PMR.
After reading extensively on Mayo Connect and other medical papers, I did question my rheumatologist why I was tapering so quickly, as so many of the comments I read suggested tapering once a month from 10 mg to 9 mg, then 8 mg, etc. He said that was the historical recommendations, but the latest science of PMR was to taper as quickly as possible until you get to 5 mg or less. In that way you can better avoid the numerous negative side effects of prednisone, with an ultimate goal of getting off of the drug.
I now understand that everyone's journey with this debilitating disease is unique, and I am very thankful that I've been able to taper this quickly, and hope that I can get to 2.5 mg next month, and then consider stopping entirely. And hoping that my adrenal glands will be "restarting" at sufficient levels and I do not have to resume any levels of Prednisone.
I did learn and my rheumatologist confirmed that it was recommended that I take my prednisone doses with an eye towards my circadian rhythms, which for most men are strongest in the 6 AM to 10 AM time frame. When I originally started on 15 mg of prednisone I was taking 5 mg every 8 hours. But when I dropped to 10 and 7.5 mg, I took approx 2/3rds in the early morning and the other 1/3 in the early evening, minimizing the "sleeplessness" side effect. Now that I'm at 5 mg, I take 100% of that in the early morning. Seems to be working for me.

Jump to this post

I hope your reduced pain with such a quick prednisone reduction continues. It took several weeks for my flare at 6mg to gradually build from 1-2/10 up to 5-6/10 pain after reducing below my lowest effective dose, and it's only been a week or so since your last big reduction. So please let us know if your body is able to maintain the good results over time. We all have fingers crossed for you.

REPLY
queenie2030 | @queenie2030 | Aug 4 8:15pm
In reply to @dorlera "My rheumatologist prescribed Methotrexate as an addition to the prednisone because of the achy sore hands..." + (show)
@dorlera

My rheumatologist prescribed Methotrexate as an addition to the prednisone because of the achy sore hands and upper arms I have in the mornings. The tapering of the prednisone is still occurring monthly for me. Started on 20 mg 4 months ago and down to 10 mg. The Methotrexate can take up to 12 weeks to work so we shall see! My Primary Care Physician told me he could treat me if I wanted and I didn't need to see a rheumatologist. He said you just need a good Internist. So, you could seek out a second opinion from a Doctor who is experienced in treating PMR if you are short on rheumatologists in your area. You might also consider sending a message through your portal or calling the nurse to explain that, since your visit, you've been concerned about the new dosage and would like to discuss further. Sometimes I think they have so much on their plate that we have to drive our point hard so they understand what we are actually trying to say. Good luck to you and everyone here!

Jump to this post

My primary care physician diagnosed me with PMR. She wanted me to see a rheumatologist who gave me a large battery of tests to determine if I had another autoimmune disease. He also did numerous X-rays. In the end he said it was PMR. He has treated me with various drugs and biologics that my primary MD could not prescribe. A good rheumatologist is worth their weight in gold. He also spends a good deal of time with me every 3 months, never hurries me away.

REPLY
1 reply
DadCue | @dadcue | Aug 4 9:25pm
In reply to @danzster79 "@DadCue Your experience mirrors my own. I began 15 mg of Prednisone on April 15th, prescribed..." + (show)
@danzster79

@dadcue
Your experience mirrors my own. I began 15 mg of Prednisone on April 15th, prescribed by my PCP, about a week after PMR hit me hard out of nowhere. After a month I saw my rheumatologist, and after he got extensive blood work completed and my hematologist cleared me of any other issues, I was diagnosed with PMR and started to taper while receiving a monthly infusion of Actemra. I went from 15 mg to 10 mg on June 15th, then down to 7.5 mg on July 15th and down to 5 mg two weeks later. He originally wanted me to go from 10 mg to 5 mg, but I did have a tough flare 3 days after going from 15mg to 10mg, so he suggested the 7.5 mg level for two weeks, and then drop to 5 mg. He indicated that putting me on Actemra not only assists in my tapering but would help ensure I didn't migrate to GCA. I've had some minor increases in body pain during this time, but just "aches" at level 1 or 2, not the level 8 to 10 pain I was suffering during the first couple weeks of PMR.
After reading extensively on Mayo Connect and other medical papers, I did question my rheumatologist why I was tapering so quickly, as so many of the comments I read suggested tapering once a month from 10 mg to 9 mg, then 8 mg, etc. He said that was the historical recommendations, but the latest science of PMR was to taper as quickly as possible until you get to 5 mg or less. In that way you can better avoid the numerous negative side effects of prednisone, with an ultimate goal of getting off of the drug.
I now understand that everyone's journey with this debilitating disease is unique, and I am very thankful that I've been able to taper this quickly, and hope that I can get to 2.5 mg next month, and then consider stopping entirely. And hoping that my adrenal glands will be "restarting" at sufficient levels and I do not have to resume any levels of Prednisone.
I did learn and my rheumatologist confirmed that it was recommended that I take my prednisone doses with an eye towards my circadian rhythms, which for most men are strongest in the 6 AM to 10 AM time frame. When I originally started on 15 mg of prednisone I was taking 5 mg every 8 hours. But when I dropped to 10 and 7.5 mg, I took approx 2/3rds in the early morning and the other 1/3 in the early evening, minimizing the "sleeplessness" side effect. Now that I'm at 5 mg, I take 100% of that in the early morning. Seems to be working for me.

Jump to this post

I would like to know what the latest science says. If the recommendations only say to taper as quickly as possible until you get to 5 mg or less it doesn't say how to do this. I think a faster taper is possible with Actemra but I'm not sure there is any "best way" to do this.

There was a recent study done but there were limitations with the study design.
https://www.medscape.com/viewarticle/998371
---------------------------------------------
When I started on Actemra 5 years ago I didn't get any instructions.. My rheumatologist started me on injections every 2 weeks. All my rheumatologist said was that I should try to taper off Prednisone. I went with the "depends how I feel method of tapering."

I was already at 10 mg so I didn't have too far to taper. However tapering from 10 mg to zero would have taken me years. I had many failed attempts during my 12 years of taking Prednisone. It took me 10 years to get to where I could stay on 10 mg of Prednisone.

The 7 mg dose of Prednisone was a huge barrier for me to overcome. I would go from 10 mg to 7 mg but always needed to go back to 10 mg.

I can only share with you how I tapered off Prednisone after Actemra was started. From 10 mg of prednisone. I tapered by 1 mg per month for the first 3 months until I reached 7 mg. I was surprised that I was on 7 mg without having more pain.

Since I felt well, I decided to put Actemra to the test. Actually, I was skeptical that Actemra would work so I decided to try a faster taper. I wanted to get the 'inevitable flare" over with. I decided to taper by 1 mg per week, I couldn't believe I was on 3 mg and still didn't have more pain.

Things got interesting when I was on 3 mg. I didn't feel well so I decided to call my primary care doctor. I didn't think it was a PMR problem. My primary care doctor was the one who ordered the a.m. cortisol level which was low. I think he told my rheumatologist who told me to stay on 3 mg of prednisone. Somehow I was referred to an endocrinologist.

I mostly stayed on 3 mg of Prednisone while I waited for my endocrinology appointment. I did some "experimenting'' with my Prednisone dose but I would rather not say what I did. I was on 3 mg most of the time for about 4 months before I was seen by the endocrinologist. She verified that my cortisol level was still low but it had improved since the first cortisol level was done.

Another cortisol level was checked 2 months later at my next endocrinology appointment. My endocrinologist said that cortisol level was "adequate" but she didn't know what would happen if I stopped Prednisone. She said 3 mg was a small dose so I could just stop Prednisone without tapering if I wished. She didn't tell me to stop Prednisone but she wanted to know what happened if I did. She gave me her direct number to call if anything happened.

I stopped prednisone and lots of things happened but I didn't have a PMR flare. Suffice it to say my Actemra injections were increased to weekly instead of every two weeks. Now I do a monthly infusion of Actemra because an infusion seems to work better than the injections. I have been completely off Prednisone for the last 3.5 years. My rheumatologist doesn't plan to stop Actemra as long as it continues to work.

REPLY
DadCue | @dadcue | Aug 4 9:40pm
In reply to @queenie2030 "My primary care physician diagnosed me with PMR. She wanted me to see a rheumatologist who..." + (show)
@queenie2030

My primary care physician diagnosed me with PMR. She wanted me to see a rheumatologist who gave me a large battery of tests to determine if I had another autoimmune disease. He also did numerous X-rays. In the end he said it was PMR. He has treated me with various drugs and biologics that my primary MD could not prescribe. A good rheumatologist is worth their weight in gold. He also spends a good deal of time with me every 3 months, never hurries me away.

Jump to this post

What biologics have you tried?

My primary MD won't give me any advice about biologics. He says biologics are "out of his league" and tells me my rheumatologist needs to answer my questions. which pertain to biologics.

REPLY
queenie2030 | @queenie2030 | Aug 4 10:17pm

I tried Kevzara. I felt great and easily tapered down on prednisone. After two months my skin began to peel and a skin cancer popped up on my hand. I quit so I could have MOHS surgery and am afraid to try again. My skin quit peeling also when I quit. I’m sure not everyone has those problems on it.

REPLY
andirae | @andirae | Aug 5 9:45am

Frustration again!!
Rheumatologist finally got back to me after I sent a second message today. She seemed put out and offended that I was taking up her valuable time to see patients.

I tried to plan ahead to get the things I wanted to say on paper. Didn’t get to it all because she flustered me so by her attitude and telling me I don’t listen. (I’m sorry, but she doesn’t listen to me. )
I did get to ask about the increase from 5mg to 10mg since I was having low pain levels. Her response, “ You are still complaining about some shoulder pain in the morning still. You should not be having any. Want to get the pain managed and then put you on the other med to get you off prednisone and control pain. “
She keeps pushing methotrexate and kevzara.
Also my inflammation markers staying normal and low didn’t seem to matter.

She also suggested I get another opinion. (Mean get another dr?)

I don’t think at this point I’m ready for those other meds. I’ve been working at this since February with 20mg and started 5mg a week ago. I’m frustrated and mad at myself for not clearly stating that. I’m not sure what the normal time schedule it is for using other meds over prednisone.

So I feel a little lost. Not sure whether to follow her recommendation to jump to 10mg or hold the present course?

I did call my pcp to see about getting referred to another dr. Who knows how long that will take? In the meantime…?

REPLY
3 replies
DadCue | @dadcue | Aug 5 10:56am
In reply to @andirae "Frustration again!! Rheumatologist finally got back to me after I sent a second message today. She..." + (show)
@andirae

Frustration again!!
Rheumatologist finally got back to me after I sent a second message today. She seemed put out and offended that I was taking up her valuable time to see patients.

I tried to plan ahead to get the things I wanted to say on paper. Didn’t get to it all because she flustered me so by her attitude and telling me I don’t listen. (I’m sorry, but she doesn’t listen to me. )
I did get to ask about the increase from 5mg to 10mg since I was having low pain levels. Her response, “ You are still complaining about some shoulder pain in the morning still. You should not be having any. Want to get the pain managed and then put you on the other med to get you off prednisone and control pain. “
She keeps pushing methotrexate and kevzara.
Also my inflammation markers staying normal and low didn’t seem to matter.

She also suggested I get another opinion. (Mean get another dr?)

I don’t think at this point I’m ready for those other meds. I’ve been working at this since February with 20mg and started 5mg a week ago. I’m frustrated and mad at myself for not clearly stating that. I’m not sure what the normal time schedule it is for using other meds over prednisone.

So I feel a little lost. Not sure whether to follow her recommendation to jump to 10mg or hold the present course?

I did call my pcp to see about getting referred to another dr. Who knows how long that will take? In the meantime…?

Jump to this post

I give your rheumatologist credit for wanting to "manage your pain." She isn't wrong for wanting to do that. I think it is more of an issue of having "no pain" versus "tolerable pain."

I'm more of a person who thinks "tolerable pain" is acceptable. There was once a time when I had no pain but that isn't my reality anymore. I think having "no pain" is unrealistic. However, when"no pain" was more of my norm then any pain at all was unacceptable to me.

As for being treated with methotrexate and/or Kevzara versus staying on Prednisone. Most of that is a personal choice that you alone must ultimately make. My rheumatologist always gave me the choice of trying another medication. There was a time when Prednisone didn't seem like such a bad choice. That too changed with time.

I don't have any experience with Kevzara but I have taken Actemra for 5 years to treat PMR. When Actemra was first offered to me I had already taken Prednisone daily for 12 years. I had doubts about ever getting off Prednisone. I read comments about Prednisone being better because it was the "devil I knew" versus another devil I didn't know. There were also comments about Prednisone being the "only option" for PMR. It was my choice to try the unknown but my rheumatologist recommended trying Actemra.

FYI ... methotrexate was another devil for me. That one didn't work for me but it might for you.

In my case, Actemra wasn't a devil at all. It has been a much better option for me compared to Prednisone. Your mileage with Kevzara might be different.

My rheumatologist said in response to prednisone being the "devil I know" and the "only option" comments was different. My rheumatologist said, "It was my choice but I wouldn't know unless I tried Actemra to see if it works or not."

I have now had a remarkable run of more than 3 years of being off prednisone. I never want to go back on prednisone again!

REPLY
2 replies
andirae | @andirae | Aug 5 11:35am
In reply to @dadcue "I give your rheumatologist credit for wanting to "manage your pain." She isn't wrong for wanting..." + (show)
@dadcue

I give your rheumatologist credit for wanting to "manage your pain." She isn't wrong for wanting to do that. I think it is more of an issue of having "no pain" versus "tolerable pain."

I'm more of a person who thinks "tolerable pain" is acceptable. There was once a time when I had no pain but that isn't my reality anymore. I think having "no pain" is unrealistic. However, when"no pain" was more of my norm then any pain at all was unacceptable to me.

As for being treated with methotrexate and/or Kevzara versus staying on Prednisone. Most of that is a personal choice that you alone must ultimately make. My rheumatologist always gave me the choice of trying another medication. There was a time when Prednisone didn't seem like such a bad choice. That too changed with time.

I don't have any experience with Kevzara but I have taken Actemra for 5 years to treat PMR. When Actemra was first offered to me I had already taken Prednisone daily for 12 years. I had doubts about ever getting off Prednisone. I read comments about Prednisone being better because it was the "devil I knew" versus another devil I didn't know. There were also comments about Prednisone being the "only option" for PMR. It was my choice to try the unknown but my rheumatologist recommended trying Actemra.

FYI ... methotrexate was another devil for me. That one didn't work for me but it might for you.

In my case, Actemra wasn't a devil at all. It has been a much better option for me compared to Prednisone. Your mileage with Kevzara might be different.

My rheumatologist said in response to prednisone being the "devil I know" and the "only option" comments was different. My rheumatologist said, "It was my choice but I wouldn't know unless I tried Actemra to see if it works or not."

I have now had a remarkable run of more than 3 years of being off prednisone. I never want to go back on prednisone again!

Jump to this post

I’m just so torn at jumping back to 10mg per dr and continue my tapering.
I’ve gotten down to 5mg starting July 28 and have managed with the pain. It’s not over a 2 yet but it will probably take longer to adjust than other dosages but it’s an unknown. Going back to 10 means my tapering goes longer. (At least that’s my presumption.)

What was the turning point that made you use a biologic?

I really can’t say I’ve had a flare unless that means some discomfort as tapering steps go. I have never returned to the original pain levels pre steroid.

I find it interesting that the pain locations somewhat change at each level. Used to really only be the upper arms toward shoulder but now I get some neck and lower back at times. Even my forearm and thing tingling decreased after starting during 6mg taper but has started up more when I started 5mg.
What a journey! I know mine has been short compared to yours. I’m glad things have worked out for you and that you share willingly.

REPLY
1 reply
andirae | @andirae | Aug 5 11:45am
In reply to @dadcue "I give your rheumatologist credit for wanting to "manage your pain." She isn't wrong for wanting..." + (show)
@dadcue

I give your rheumatologist credit for wanting to "manage your pain." She isn't wrong for wanting to do that. I think it is more of an issue of having "no pain" versus "tolerable pain."

I'm more of a person who thinks "tolerable pain" is acceptable. There was once a time when I had no pain but that isn't my reality anymore. I think having "no pain" is unrealistic. However, when"no pain" was more of my norm then any pain at all was unacceptable to me.

As for being treated with methotrexate and/or Kevzara versus staying on Prednisone. Most of that is a personal choice that you alone must ultimately make. My rheumatologist always gave me the choice of trying another medication. There was a time when Prednisone didn't seem like such a bad choice. That too changed with time.

I don't have any experience with Kevzara but I have taken Actemra for 5 years to treat PMR. When Actemra was first offered to me I had already taken Prednisone daily for 12 years. I had doubts about ever getting off Prednisone. I read comments about Prednisone being better because it was the "devil I knew" versus another devil I didn't know. There were also comments about Prednisone being the "only option" for PMR. It was my choice to try the unknown but my rheumatologist recommended trying Actemra.

FYI ... methotrexate was another devil for me. That one didn't work for me but it might for you.

In my case, Actemra wasn't a devil at all. It has been a much better option for me compared to Prednisone. Your mileage with Kevzara might be different.

My rheumatologist said in response to prednisone being the "devil I know" and the "only option" comments was different. My rheumatologist said, "It was my choice but I wouldn't know unless I tried Actemra to see if it works or not."

I have now had a remarkable run of more than 3 years of being off prednisone. I never want to go back on prednisone again!

Jump to this post

I also should mention my functional dietary nutritionist feels she can help get a handle on this instead of a biologic. As she says”drs are trying to control symptoms and not looking for the root cause. That’s my realm. “

I am not sure of any timetable for any of this whether biologic or other means.
Being that you dealt with PMR for a longer period, is it debilitating over time or a nuisance(?) to deal with?

And as always, I’m looking for knowledge and answers since I know no one personally who has this condition or even heard of it. This forum has given me comfort and a less feeling of isolation in this journey.

REPLY
1 reply
DadCue | @dadcue | Aug 5 12:40pm
In reply to @andirae "I’m just so torn at jumping back to 10mg per dr and continue my tapering. I’ve..." + (show)
@andirae

I’m just so torn at jumping back to 10mg per dr and continue my tapering.
I’ve gotten down to 5mg starting July 28 and have managed with the pain. It’s not over a 2 yet but it will probably take longer to adjust than other dosages but it’s an unknown. Going back to 10 means my tapering goes longer. (At least that’s my presumption.)

What was the turning point that made you use a biologic?

I really can’t say I’ve had a flare unless that means some discomfort as tapering steps go. I have never returned to the original pain levels pre steroid.

I find it interesting that the pain locations somewhat change at each level. Used to really only be the upper arms toward shoulder but now I get some neck and lower back at times. Even my forearm and thing tingling decreased after starting during 6mg taper but has started up more when I started 5mg.
What a journey! I know mine has been short compared to yours. I’m glad things have worked out for you and that you share willingly.

Jump to this post

"What was the turning point that made you use a biologic?"

I didn't want to take Actemra. I was listening to the negatives more than the positives. I was interested in trying a biologic but I didn't know which one. I wanted prednisone in the beginning but that changed over time. I was getting frustrated with my rheumatologist because I wanted to be off prednisone. I somewhat accused my rheumatologist that she only prescribed prednisone to me because she thought it was what I originally wanted. I actually messaged my primary care doctor tactfully complaining that I was stuck with being on prednisone for the rest of my life. My primary doctor forwarded my concerns to my rheumatologist.

My rheumatologist thought I needed prednisone for PMR for a few years but she never wanted me to be on prednisone for 12 years. At the time, Actemra had been recently FDA approved for GCA but not PMR. My rheumatologist thought Actemra might be my "best chance" of ever getting off prednisone. My rheumatologist needed to do extra work to get Actemra approved. for me. I felt obligated to try Actemra because of all the trouble I was causing.

I wasn't so sure Actemra would work. I only tried Actemra to "get it over with so I could move on." I was full of pessimism and I didn't think Actemra would work to be completely honest. I just tried Actemra to prove to my rheumatologist that Actemra wouldn't work!

When Actemra worked ... I asked how my rheumatologist knew. My rheumatologist said it was a lucky guess. My guess was completely wrong. I now say their guess was better than mine because they knew more than me.

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