1. < Polymyalgia Rheumatica (PMR)

Chronic Fatigue while tapering Prednisone for PMR

Posted by macadoo @macadoo, Aug 6, 2022

I’ve had PMR since April 2020. I started on Prednisone 20 mg/day and at 18 months, I had gradually reduced to 7 mg/day. When I tried to reduce to 6.5 mg/day, I had a terrible flare up so went back up to 10mg then tapered down to 7mg where I currently am. For the past 6 months, I’ve had terrible fatigue that has gotten worse. I’m extremely tired and feel like I have a hangover (I don’t drink) most of every day and need to ‘nap’ for 4-6 hours/day.
I’ve been tapering prednisone very gradually…going down .5 mg every six weeks. When I get to 6.5, my flare ups and intense pain returns.
My rheumatologist wants me to start Methotrexate. I’ve been avoiding taking it, but I will give in and start it in a few weeks.
Has anyone had chronic fatigue while they are reducing their steroid daily dosage and found any treatment to help with the fatigue?
I appreciate any of your advice and experiences.

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

flymetothemoon | @flymetothemoon | Aug 14, 2022
In reply to @kidolibrarian "I’ve been lowering my prednisone and am down to 1 mg. Next week I go “cold..." + (show)
@kidolibrarian

I’ve been lowering my prednisone and am down to 1 mg. Next week I go “cold turkey” with none. The thing that has really helped with pain has been physical therapy concentrating on my neck, arms and shoulders. I also take chair yoga via zoom. I hurt so much less after the PT and zoom classes. I would never have been able to taper off without them. If necessary at night I take the 8 hour arthritis Tylenol so I get a better night’s sleep.

Jump to this post

I am also down to 1mg. Next week I am done. My arm, neck, shoulders and hands are painful. I am determined not to go back on this drug, unless my blood tests change. Make sure if you take the arthritis Tylenol you take something to coat your stomach, I can't take that or alleve. Ongoing nightmare for sure. Hope you feel better.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 14, 2022
In reply to @njtodctode "Hi I laughed at your opening line. In a good way. I agree with you 100%...." + (show)
@njtodctode

Hi
I laughed at your opening line. In a good way. I agree with you 100%. I didn't go down because I wanted to.but that was what was prescribed. I didn't know anything about PMR or.it's existence. So I am following docs orders. I realize now late into this that I have a doc and PA focused on the pred dose. It neverade sense to me...now I am paying for it. BUT I have learned a lot here. She is gunning for me to go on methotrexate or something else on top of pred. I had a hard time.when I tried methotrexate in 2015 for RA flare. So what do you think of using that as well? I have not seen many people here talk about meds like that. Thanks for the laugh and the info
I agree with what you are telling me. Now gotta make the doc see....I moved here a year ago so we are new doc/patient. M

Jump to this post

@njtodctode, Loved your positivity in dealing with a new doctor 🙂 I think anyone struggling with a new doctor may want to read through this site and pickup some tips on patient - doctor relationships. Here are links to some of my favorite parts of the site:

The Patient Revolution - https://patientrevolution.org/
-- How We Revolt: https://patientrevolution.org/hwrdoc
-- Tools for the Visit: https://patientrevolution.org/visit-tools
-- Communications Barriers: https://patientrevolution.org/barriers
-- Let's talk about $: https://patientrevolution.org/cost

REPLY
tillysam | @tillysam | Aug 14, 2022

It has taken me 2 years to get to 7 mg of Prednisone from 80 mg. Up and down, Methotrexate and Actemra tried. The side effects for me were awful. I have been tapering down from 10 mg 1 mg each month. Because I feel so terrible I am asking my rheumatologist if I can taper 1/2 mg per month. I do not want to go back up on the Prednisone if at all possible. Detoxing is hard.

REPLY
sharonanng | @sharonanng | Aug 14, 2022
In reply to @njtodctode "Hi I laughed at your opening line. In a good way. I agree with you 100%...." + (show)
@njtodctode

Hi
I laughed at your opening line. In a good way. I agree with you 100%. I didn't go down because I wanted to.but that was what was prescribed. I didn't know anything about PMR or.it's existence. So I am following docs orders. I realize now late into this that I have a doc and PA focused on the pred dose. It neverade sense to me...now I am paying for it. BUT I have learned a lot here. She is gunning for me to go on methotrexate or something else on top of pred. I had a hard time.when I tried methotrexate in 2015 for RA flare. So what do you think of using that as well? I have not seen many people here talk about meds like that. Thanks for the laugh and the info
I agree with what you are telling me. Now gotta make the doc see....I moved here a year ago so we are new doc/patient. M

Jump to this post

My rheumatologist also suggested trying methotrexate. Per my rheumatologist, they see only a 50% rate of help with methotrexate, and there are a whole new batch of side effects. I discussed my concerns with my primary care physician and she agreed with me. I am only 5 months into PMR, and am not ready to add something new to the mix. I know that prednisone works if I am on the right dosage.

REPLY
1 reply
njtodctode | @njtodctode | Aug 14, 2022
In reply to @sharonanng "My rheumatologist also suggested trying methotrexate. Per my rheumatologist, they see only a 50% rate of..." + (show)
@sharonanng

My rheumatologist also suggested trying methotrexate. Per my rheumatologist, they see only a 50% rate of help with methotrexate, and there are a whole new batch of side effects. I discussed my concerns with my primary care physician and she agreed with me. I am only 5 months into PMR, and am not ready to add something new to the mix. I know that prednisone works if I am on the right dosage.

Jump to this post

Thank you for the info. How is your doc tapering you...I mean in 5 mg.jumps or 1 mg. or....
Yes I am going to need to talk to her about all of this. I hope she can handle what I have learned which makes total sense to me. Also.when I had my first and only RA flare and I couldn't get through a full week of meth. we upped my placquenil and added 3.mg of pred. That was in 2015 and it's worked no side effects. So.........thank.you again
M

REPLY
aspine | @aspine | Aug 14, 2022
In reply to @njtodctode "Hi I laughed at your opening line. In a good way. I agree with you 100%...." + (show)
@njtodctode

Hi
I laughed at your opening line. In a good way. I agree with you 100%. I didn't go down because I wanted to.but that was what was prescribed. I didn't know anything about PMR or.it's existence. So I am following docs orders. I realize now late into this that I have a doc and PA focused on the pred dose. It neverade sense to me...now I am paying for it. BUT I have learned a lot here. She is gunning for me to go on methotrexate or something else on top of pred. I had a hard time.when I tried methotrexate in 2015 for RA flare. So what do you think of using that as well? I have not seen many people here talk about meds like that. Thanks for the laugh and the info
I agree with what you are telling me. Now gotta make the doc see....I moved here a year ago so we are new doc/patient. M

Jump to this post

Hi, njodctode, "Laughter is the best medicine!" as it was once said by "somebody"!! Lotsa people use methotrexate. I never have to this point, so I don't know a whole lot about it. I know it doesn't work for everyone, but it does help many to get their pred dose down. You probably know much more about it than I do, as you've used it in the past. But you say you had problems, so that would need to be a discussion with your doctor. I think I would have a straight forward conversation with the doctor, saying you'd like another chance with the prednisone doing it the correct way - gradually - and see what kind of headway you make. And then if it doesn't work, the methotrexate might be called for. You need to go to a site called HealthUnlocked.com/pmrgcauk and go totheir FAQ's and look for their tapering plans - several to choose from- and see what works for you. Again, I wish you the best!

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 14, 2022
In reply to @aspine "Hi, njodctode, "Laughter is the best medicine!" as it was once said by "somebody"!! Lotsa people..." + (show)
@aspine

Hi, njodctode, "Laughter is the best medicine!" as it was once said by "somebody"!! Lotsa people use methotrexate. I never have to this point, so I don't know a whole lot about it. I know it doesn't work for everyone, but it does help many to get their pred dose down. You probably know much more about it than I do, as you've used it in the past. But you say you had problems, so that would need to be a discussion with your doctor. I think I would have a straight forward conversation with the doctor, saying you'd like another chance with the prednisone doing it the correct way - gradually - and see what kind of headway you make. And then if it doesn't work, the methotrexate might be called for. You need to go to a site called HealthUnlocked.com/pmrgcauk and go totheir FAQ's and look for their tapering plans - several to choose from- and see what works for you. Again, I wish you the best!

Jump to this post

Here's the tapering plans @aspine was referring to - https://healthunlocked.com/pmrgcauk/posts/private/146756447/tapering-plans-%F0%9F%93%89

REPLY
2 replies
njtodctode | @njtodctode | Aug 14, 2022
In reply to @aspine "Hi, njodctode, "Laughter is the best medicine!" as it was once said by "somebody"!! Lotsa people..." + (show)
@aspine

Hi, njodctode, "Laughter is the best medicine!" as it was once said by "somebody"!! Lotsa people use methotrexate. I never have to this point, so I don't know a whole lot about it. I know it doesn't work for everyone, but it does help many to get their pred dose down. You probably know much more about it than I do, as you've used it in the past. But you say you had problems, so that would need to be a discussion with your doctor. I think I would have a straight forward conversation with the doctor, saying you'd like another chance with the prednisone doing it the correct way - gradually - and see what kind of headway you make. And then if it doesn't work, the methotrexate might be called for. You need to go to a site called HealthUnlocked.com/pmrgcauk and go totheir FAQ's and look for their tapering plans - several to choose from- and see what works for you. Again, I wish you the best!

Jump to this post

Thanks so much. I agree and will check out the link. Thanks for sharing. Be well.

REPLY
njtodctode | @njtodctode | Aug 15, 2022
In reply to @johnbishop "Here's the tapering plans @aspine was referring to - https://healthunlocked.com/pmrgcauk/posts/private/146756447/tapering-plans-%F0%9F%93%89" + (show)

Hi John ... I checked that site out good info there. I wanted to see if you have any suggestions on this: if I go back to 20 mgs...what should be the next dose? For the first step down? My rheum does 5 mg down after 2 weeks, then again to 10 mg 2 weeks later.
Then after 2 weeks down to 5 mg. Then much slower. BUT my symptoms have never fully cleared hence all this mishigas. The worst symptoms did clear ...my hands which were THE worst ever... but then the more typical symptoms rang thru and now are a bigger issue. So....not to state the obvious but 10 which is where I was until recently (2nd time at that dose) was worse than the 15...makes sense...but still the symptoms are pretty bad. So....do I hang at 15 go to 20. That is what I need to figure out and get with my rhrum or her PA. I think the hardest thing is how cleared up should the symptoms be before reducing. 100%? Oy. My brain cells hurt and it's not that giant cell thing...
..lol. anyway thanks for all of your help. Mickie.
Be well.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.