Tapering prednisone and stress

Posted by teddyz @teddyz, Dec 9, 2023

I'm supposed to taper from 5mg prednisone this week to 4 mg. We're doing a super slow taper this time because if I can't successfully get off the prednisone, my rheumatologist said I'll have to go methotrexate for "life". Trouble is, I'm under a lot of stress right now. I'm concerned that this stress is going to impact my adjustment to reduced steroids. Yes, I'll try to do as much self care as I can but I would like to know if anyone has any info about stress and tapering or if I'm worrying about things I should let go.
Thanks in advance.

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I'm going to the same thing and wondering the best thing to do. I just stopped the prednisone about 3 weeks ago. I actually have quite a bit of pain in the morning 6 out of 10 but by 10:00 when I become pretty active it's very bearable. Is it better to go back on the prednisone or since I am still able to be quite active just stay off of it?

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i too was tapering slowly off Pred. (3years) i was down to 3mg a month. was doing well until...i had a relapse and had to go on a very disappointing 15mg for two weeks then 10....5.... next visit. I too have a lot of stress in my life which I am sure contributes to this challenging disease ( condition, I believe I incurred from Covid Vax and booster. It ruined my immune system) I was wondering, has your Rheumy suggested Actemra Infusion.? That is what mine rec to decrease pred completely. Of course after reading the drug info I am , to put it mildly, fearful. Any thoughts?
Thanks
Dianne

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Hi @teddyz, I know tapering off of prednisone and worrying about if you will ever be able to taper off are thoughts that have been with most of us who have struggled with PMR and trying to get off of prednisone. It is stressful and I think it's one of the reasons we have to taper slowly. Here's some information that explains a little about stress and tapering off of prednisone.

"It mimics the stress hormone cortisol. When taken for extended periods, prednisone interferes with the body's natural production of cortisol. As a result, it is not recommended to stop prednisone abruptly. Doing so can cause body aches, fatigue, fever, and other uncomfortable withdrawal symptoms."
--- How to Slowly and Safely Taper Off Prednisone: https://www.verywellhealth.com/does-prednisone-tapering-minimize-withdrawal-190242.

There is a discussion that might be helpful if you have not already seen it.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Have you made any lifestyle changes in diet or exercise to see if they might be helpful?

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@sandy1988

I'm going to the same thing and wondering the best thing to do. I just stopped the prednisone about 3 weeks ago. I actually have quite a bit of pain in the morning 6 out of 10 but by 10:00 when I become pretty active it's very bearable. Is it better to go back on the prednisone or since I am still able to be quite active just stay off of it?

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of course first I'd ask ur Dr. I took Tylenol Arthritis (8Hr) which helped as i tapered. unfortunately i had a relapse , just when i thought i was doing so well. Dr. suggests Actemra Infusion. If I were you I would see how it goes without Pred...
if it's bearable... i would take Tylenol Arthritis.. I do Pilates which makes it somewhat better, sometimes...

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@johnbishop

Hi @teddyz, I know tapering off of prednisone and worrying about if you will ever be able to taper off are thoughts that have been with most of us who have struggled with PMR and trying to get off of prednisone. It is stressful and I think it's one of the reasons we have to taper slowly. Here's some information that explains a little about stress and tapering off of prednisone.

"It mimics the stress hormone cortisol. When taken for extended periods, prednisone interferes with the body's natural production of cortisol. As a result, it is not recommended to stop prednisone abruptly. Doing so can cause body aches, fatigue, fever, and other uncomfortable withdrawal symptoms."
--- How to Slowly and Safely Taper Off Prednisone: https://www.verywellhealth.com/does-prednisone-tapering-minimize-withdrawal-190242.

There is a discussion that might be helpful if you have not already seen it.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Have you made any lifestyle changes in diet or exercise to see if they might be helpful?

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Safety Pred vs Actemra Infusion...? Which wins? hmmmm Pred has been around forever Actemra not...

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@ddmo

Safety Pred vs Actemra Infusion...? Which wins? hmmmm Pred has been around forever Actemra not...

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I'm not a prednisone advocate but have taken it for 2 occurrences of PMR (3-1/2 years and 1-1/2 years) with no issues other that weight gain. I haven't taken Actemra but would have to discuss it with my doctor and weigh the risks both ways.

Just an fyi...
"Actemra has a boxed warning for risk of serious infections. A boxed warning is the most serious warning from the Food and Drug Administration (FDA). Actemra may cause serious infections such as tuberculosis (TB). Some infections from Actemra may be serious enough to require a hospital stay."
--- Actemra Side Effects: What They Are and How to Manage Them: https://www.healthline.com/health/drugs/actemra-side-effects

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@johnbishop

I'm not a prednisone advocate but have taken it for 2 occurrences of PMR (3-1/2 years and 1-1/2 years) with no issues other that weight gain. I haven't taken Actemra but would have to discuss it with my doctor and weigh the risks both ways.

Just an fyi...
"Actemra has a boxed warning for risk of serious infections. A boxed warning is the most serious warning from the Food and Drug Administration (FDA). Actemra may cause serious infections such as tuberculosis (TB). Some infections from Actemra may be serious enough to require a hospital stay."
--- Actemra Side Effects: What They Are and How to Manage Them: https://www.healthline.com/health/drugs/actemra-side-effects

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i know about that boxed warning... just don't know what to do... i'm sure my doc will monitor my infusions with blood work but still.............
thank u for your insight and be well

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@ddmo

i know about that boxed warning... just don't know what to do... i'm sure my doc will monitor my infusions with blood work but still.............
thank u for your insight and be well

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Just saw your other post and figured you might have already seen the boxed warning. Sounds like you have a doc that listens and works with you which is great. Hoping you can kick this beast sooner rather than later.

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@teddyz I also am on a very slow taper -- now at 6.5 mg of Prednisone daily. I am a big fan of listening to your body and going as slowly as your body tells you it wants to go. My practice is to decrease .5 mg at a time and wait until I have virtually no symptoms of PMR before decreasing again. (I have had a return of old orthopedic pain since I've been below 7 mg., but it is different from PMR pain.) Also, I start by alternating my old dose and my new dose for a week before going to the lower dose. My rheumatologist would like me to taper faster, but I have not had a flare since starting a very slow taper, so I'm staying with this plan. I really don't want to introduce a new medication like the biologics or Methotrexate if I can help it.

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@lfd28

@teddyz I also am on a very slow taper -- now at 6.5 mg of Prednisone daily. I am a big fan of listening to your body and going as slowly as your body tells you it wants to go. My practice is to decrease .5 mg at a time and wait until I have virtually no symptoms of PMR before decreasing again. (I have had a return of old orthopedic pain since I've been below 7 mg., but it is different from PMR pain.) Also, I start by alternating my old dose and my new dose for a week before going to the lower dose. My rheumatologist would like me to taper faster, but I have not had a flare since starting a very slow taper, so I'm staying with this plan. I really don't want to introduce a new medication like the biologics or Methotrexate if I can help it.

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We're following a similar path. I reduce by .5mg at a time too and alternate the old dose with the new for the first week to soften the reduction. Second week sometimes there is some slight tenderness in hand or wrist joints, but no pain. Third week is to stabilise and get ready for the next reduction. That's the week I hit the hard yard work while I have the best pain protection.

The total reduction is 1mg every 6 weeks which is mid range in the reduction schedule I was given of 1mg every 4-8wks. So it's not a slow reduction, just a more gradual one to give the body the best chance to adapt to the reduction.

Currently on 6.5mg, taking 5mg morning and 1.5mg early evening for no morning pain. Let's stick to our own plans and not push to satisfy someone who doesn't have to wear the consequences. So far, so good.

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