1. < Polymyalgia Rheumatica (PMR)

Weaning off of prednisone & pain management

Posted by joan7 @joan7, Feb 25 9:11am

Last Tuesday, I went down from 7.5 mg of Prednisone down to 5 mgs. For the past 4 days my pain level has been a 12 out of 10. I could barely walk. Although I hate to take Advil, Motrin, etc., I took 2 Advil Gels and within 1 hour I felt better (not perfect, but a lot better). Hours later the pain started to come back but was maybe a 6 out of 10. The next morning I was crippled by the pain all over again. I forced myself to get moving, but could barely get around. Drank a lot of ice water, and before I went to bed, I raised the head part of my bed up and fell asleep. Woke up this morning with very little pain. Has anyone experienced any type of correlation between raising your head up vs laying flat, and the amount of pain you will experience? Had that slight change made that much of a difference in your pain level? I have found that drinking almost all my drinks with a lot of ice, definitely helps with internal inflammation. What are your experiences or thoughts regarding this matter? Thanks!

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DadCue | @dadcue | Mar 3 9:19am
In reply to @emaureen "I wouldn't go so far as to say that lowering by .5 or .25mg was my..." + (show)
@emaureen

I wouldn't go so far as to say that lowering by .5 or .25mg was my idea. My guess is that the rheumatologist uses the easiest instructions to follow - i.e., after 10mg, reduce by 1mg every 2 to 4 weeks. As well as the Mayo PMR forums, Facebook also has a very busy (and less organized) PMR area with some 16,000 participants when I joined. Polymyalgia rheumatica seems to be the most common ailment that no one has ever heard of, so commonly a first post reflects utter shock.

Tapering by percentages is often brought up and made more sense to me than dropping by 1mg when the base amount kept changing.

Here's a copied list of the percentage drop if you just taper by 1mg each time:
10-9 is 10%
9-8 is 11%
8-7 is 12.5%
7-6 is 14.2%
6-5 is 16.6%
5-4 is 20%
4-3 is 25%
3-2 is 33.3%
2-1 is 50%

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I used to think the 10% rule made a difference. That was before an endocrinologist told me to stay on 3 mg of until my cortisol level improved. I stayed on 3 mg of prednisone for many months without tapering until my cortisol level improved.

After my cortisol level improved, my endocinologist said I could simply stop taking prednisone. I did my final "countdown taper" of 3 mg ... 2 mg ... 1 mg ... zero over a 4 day period. I don't recommend this unless you are certain of what your cortisol level is doing. Otherwise, I would stick with the 10% reduction rule.

The other aspect of this is whether or not the PMR inflammation is controlled. I was pretty sure Actemra had that part covered. Actemra allowed me to taper quickly down to 3 mg and remain there for months. That allowed time for my adrenals to recover as my cortisol level improved.

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1 reply
besmith57 | @besmith57 | Mar 3 1:03pm

I was diagnosed with PMR a month ago after excruciating pain to the point I had to get my walker back out from my lumbar fusion. I will be weaning off from 20mg to 15mg on Wednesday. I know I have to get off prednisone because of my osteoporosis. I'm so worried that my symptoms will come back. I also now have extremely dry eyes. My ophthalmologist told me I'm tearing off a layer of my retina when I wake up. I'm using eye drops and lubricants.to help, but my eyes still hurt, and my vision is sometimes very blurry. I guess I'm asking what I should expect while weaning. TIA

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1 reply
joan7 | @joan7 | Mar 3 1:37pm
In reply to @dadcue "I used to think the 10% rule made a difference. That was before an endocrinologist told..." + (show)
@dadcue

I used to think the 10% rule made a difference. That was before an endocrinologist told me to stay on 3 mg of until my cortisol level improved. I stayed on 3 mg of prednisone for many months without tapering until my cortisol level improved.

After my cortisol level improved, my endocinologist said I could simply stop taking prednisone. I did my final "countdown taper" of 3 mg ... 2 mg ... 1 mg ... zero over a 4 day period. I don't recommend this unless you are certain of what your cortisol level is doing. Otherwise, I would stick with the 10% reduction rule.

The other aspect of this is whether or not the PMR inflammation is controlled. I was pretty sure Actemra had that part covered. Actemra allowed me to taper quickly down to 3 mg and remain there for months. That allowed time for my adrenals to recover as my cortisol level improved.

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Thank you so much for the information! I know my cortisol levels were okay in the past, but not sure how they are now. I'll have them checked. I have to have blood work again in the next couple of weeks. As of right now, my PMR inflammation levels are under control; I'm on Hydroxychloroquine and that is working as well. Not sure how my adrenals have been but will check that out also.

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1 reply
joan7 | @joan7 | Mar 3 1:39pm
In reply to @mikeydee "After reading a ton of posts on a facebook's Healthunlocked, the posters all take prednisone plus..." + (show)
@mikeydee

After reading a ton of posts on a facebook's Healthunlocked, the posters all take prednisone plus more, I came up with my tapering plan of 0.25mg every 6 days. By the 3rd day after the taper how I felt predicted success at that level. A few times I had to extend due to not feeling well or a cold.

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Thank you for your feedback; greatly appreciated!

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DadCue | @dadcue | Mar 3 4:12pm
In reply to @joan7 "Thank you so much for the information! I know my cortisol levels were okay in the..." + (show)
@joan7

Thank you so much for the information! I know my cortisol levels were okay in the past, but not sure how they are now. I'll have them checked. I have to have blood work again in the next couple of weeks. As of right now, my PMR inflammation levels are under control; I'm on Hydroxychloroquine and that is working as well. Not sure how my adrenals have been but will check that out also.

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There was a remark about my adrenals after I had an abdominal CT scan last week. The CT scan looked to see how my kidney stones were doing. The CT scan report said my adrenals were "unremarkable." I guess that means my adrenals were doing okay.

I wish the report would have said my kidney stones were unremarkable. My kidney stones are getting bigger so I need treatment to shrink them again. Also, my prostate wasn't doing very well because it was enlarged.

I didn't really know how my cortisol level was doing the entire time I was on prednisone for PMR. A cortisol level can't really be checked if your prednisone dose is too high. A prednisone dose greater than 3 mg was what my endocrinologist said was too high of a dose. Prednisone interferes with your serum cortisol level and give falsely higher results.

"Patients treated with prednisone, prednisolone, and 6-methylprednisolone (especially higher doses) may show falsely elevated concentrations of cortisol. Patients with 21-hydroxylase deficiency may have elevated 21-deoxycortisol levels that can give rise to falsely elevated cortisol results.

The time of sample collection must be taken into account when interpreting results due to the cortisol secretion circadian rhythm. Severe stress can also give rise to elevated cortisol levels. For diagnostic purposes, the Cortisol results should always be assessed in conjunction with the patient's medical history, clinical examination and other findings."
https://www.healthcare.uiowa.edu/path_handbook/handbook/test510.html#:~:text=Patients%20treated%20with%20prednisone%2C%20prednisolone,to%20falsely%20elevated%20cortisol%20results.

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jilltownsend8 | @jilltownsend8 | Mar 11 9:40am
In reply to @dadcue "The following link spells it out. However, there is considerable controversy about what the "best way"..." + (show)
@dadcue

The following link spells it out. However, there is considerable controversy about what the "best way" actually is for weaning off prednisone while still managing the pain.
https://emedicine.medscape.com/article/330815-treatment
"Joint guidelines from the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR) conditionally recommend starting corticosteroid therapy with 12.5-25 mg/day of prednisone or the equivalent. [30] A systematic examination of the peer-reviewed literature, which included 30 studies, found that most patients seemed to achieve remission of PMR with a starting dose of prednisone at 15 mg/day. A slow tapering of the prednisone, less than 1 mg/month, was associated with fewer relapses. Once prednisone is tapered to 10 mg/day, a further slow taper by 1 mg every 2 months until treatment discontinuation was associated with optimal control of disease activity. [43]"

From my personal experience of 12 years taking prednisone for PMR, there are no magic ways that work the best for everyone. There were some approaches that worked best for me personally.

I have decided there is no "best way" and you have to do "what works best for you." That doesn't mean to "self-medicate" and go it alone. I tried that too and it didn't work.

You need to work with your doctor until you find a way that works for both you and your doctor. Easier said than done! I gave my rheumatologist most of the credit but WE eventually found a way. I have been off prednisone for 2 years with minimal pain. I have mostly recovered from prednisone side effects.

The link above also provides some alternatives to long term prednisone when the recommendations don't work. I think you still need to give prednisone a year or two before the alternatives are tried. This time frame is usually followed unless you experience considerable side effects from prednisone earlier than some people.

Sometimes PMR isn't "self-limiting" like it is supposed to be. However, the side effects from long term prednisone use are well documented. In fact, any dose of less than 7.5 mg is extremely problematic and may also be a prednisone side effect acquired from long term use. This probably explains why you need to go slower when you reach single digits of prednisone.

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My Mother has been on prednisone for 2 years and has weaned off. She is still very sore but just hated being on prednisone. She now has swollen feet and hands. Has anyone else had this?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 11 10:00am
In reply to @jilltownsend8 "My Mother has been on prednisone for 2 years and has weaned off. She is still..." + (show)
@jilltownsend8

My Mother has been on prednisone for 2 years and has weaned off. She is still very sore but just hated being on prednisone. She now has swollen feet and hands. Has anyone else had this?

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Hello @jilltownsend8, Welcome to Connect and thanks for advocating for your Mother. There have been quite a few members who have posted about swelling feet and hands that you may find helpful. Here are the search results showing discussions, comments and more.

--- prednisone +swelling hands and feet: https://connect.mayoclinic.org/search/?search=prednisone+%2Bswelling+hands+and+feet
--- swelling hands and feet: https://connect.mayoclinic.org/search/?search=swelling+in+hands+and+feet

Has your Mother's doctor or rheumatologist offered any suggestions to help?

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brian1955 | @brian1955 | Mar 12 11:38am

Good morning, I’m 68 and diagnosed with PMR last October, 2023. I started at 20mg. No problem with tapering until February 29, 2 weeks after I started 7.5 mg. My neck (turning both ways and especially looking down) started getting sore and stiff on both sides. Tried acetaminophen and physical therapy, but it wasn’t getting better, maybe a little worse after 9 days. I realized my initial symptoms of PMR were neck related like I was getting, but I was also feeling quite unwell/nauseous too. Thought it might be a flare, so I upped my dose to 10 Saturday, minimal help, so went to 12.5 for 2 days, felt better, still a bit unwell, then 10 mg (today). Haven’t heard back from Rheumatologist after messaging her yesterday. This morning only some discomfort on my left side of neck. And slight nausea, took some Pepcid for that. So disappointed in myself. Any thoughts, thank you!

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3 replies
DadCue | @dadcue | Mar 12 1:17pm
In reply to @brian1955 "Good morning, I’m 68 and diagnosed with PMR last October, 2023. I started at 20mg. No..." + (show)
@brian1955

Good morning, I’m 68 and diagnosed with PMR last October, 2023. I started at 20mg. No problem with tapering until February 29, 2 weeks after I started 7.5 mg. My neck (turning both ways and especially looking down) started getting sore and stiff on both sides. Tried acetaminophen and physical therapy, but it wasn’t getting better, maybe a little worse after 9 days. I realized my initial symptoms of PMR were neck related like I was getting, but I was also feeling quite unwell/nauseous too. Thought it might be a flare, so I upped my dose to 10 Saturday, minimal help, so went to 12.5 for 2 days, felt better, still a bit unwell, then 10 mg (today). Haven’t heard back from Rheumatologist after messaging her yesterday. This morning only some discomfort on my left side of neck. And slight nausea, took some Pepcid for that. So disappointed in myself. Any thoughts, thank you!

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No sense feeling disappointed with yourself. It seems like everyone has experienced some difficulty at or near that 7 mg dose of Prednisone. I wonder why?

It might be the dose that your adrenals need to contribute some cortisol to regulate inflammation better. If your adrenals don't do that in a timely manner, you will have problems. If your adrenals don't contribute some cortisol, then your only option is to take more Prednisone.

I think you are doing well to get to 7.5 mg in 6 months. It took me 12 years to get anywhere near 7 mg. I was well above 20 mg of Prednisone daily for my first 10 years.

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gman8691 | @gman8691 | Mar 12 4:04pm
In reply to @joan7 "ALSO, how slowly were you weaned off Prednisone (time wise, monthly, bi-weekly, reduction, etc.), and what..." + (show)
@joan7

ALSO, how slowly were you weaned off Prednisone (time wise, monthly, bi-weekly, reduction, etc.), and what were the level of mgs of Prednisone you were weaned by (from 5 mg to 4 to 3 to 2, etc. or 5 mg to 2.5 mgs, etc.)?

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Hi Joan. Sorry that you are having so much pain. So I was diagnosed with PMR 2 years and 10 months ago. My doctor was familiar with the symptoms and ordered a sed rate test and put me on 20mg of prednisone per day to start. Two weeks later he dropped it to 15 and my condition dropped as well. He re upped it to 20 a day and we worked together to manage the titration based on my pain levels. It was slow going but I am now at 1mg a day. I went down and back up many times during this process.
Hopefully you can work with a doctor who let this go down slowly and in rhythm with your symptoms. It takes time and patience and can be frustrating to go back up again. In my case it took time for my body to accept the new dosage so I had to go slowly 1 mg at a time then back up and then back down. Oh and raising my head did help also had to raise my arms with pillows because of the shoulder pain.

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