1. < Polymyalgia Rheumatica (PMR)

Prednisone tapering is challenging. What does remission feel like?

Posted by jmcc @jmcc, Oct 18, 2021

Hi all what’s remission feel like? Does it only happen when I’m completely off prednisone or can remission occur while I’m tapering?

I’ve had PMR for a year and three months and I’ve been on prednisone for a year. I have been able to taper down to 4mg per day with some manageable pain and moodiness, but 2 days ago my head cleared and I felt like my happy self again. I’m still a little achy but really thrilled that I’m not cranky/spacey/frustrated.

Can I accelerate the taper? Any advice?

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karinaph | @karinaph | Sep 29, 2022
In reply to @sandiw77 "I was diagnosed in May 22 but didn’t start treatment until June. I really wanted my..." + (show)
@sandiw77

I was diagnosed in May 22 but didn’t start treatment until June. I really wanted my Orthopedic doctor to weigh in on the diagnosis from my rheumatologist. When the 2 were in complete agreement, I was forced to accept the new reality. I am tapering—down to 15 mg but all of this PMR hip pain is new. I am doing fairly well but definitely notice new pain in the AM and at each taper. It does resolve after I take the prednisone but does make me wonder what life after prednisone looks like. I think we are all learning from each other. Good luck!

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Hi Sandi, I recall being anxious and wanting to taper quickly and wishing the PMR would be cured. I hope your journey is quick. Mine has not been unfortunately . I tapered to 8 mg within a year, I started getting GCA symptoms. I had to ramp up to 40 mg, then tapered quickly to 25, then the slow process again. Once again this past January I had another relapse with excessive, unrelenting PMR back/ hip pain. Back up to 40, then more swiftly to 15 ( within a month). I’ve been tapering VERY slowly since then. Now at 5 but having some difficulty so holding tight at this level.
I’ve had a roller coaster experience, and not sure if it’s typical or not.
Given the new symptoms of numbness in my leg/ foot I’m really thinking it’s a pinched nerve/ some of my lumbar stenosis showing itself. Again hoping your journey is shorter than mine.

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2 replies
dstuber | @dstuber | Oct 11, 2022
In reply to @karinaph "Good advise as always John. I’ve been on this site for 2.5 years. I have had..." + (show)
@karinaph

Good advise as always John. I’ve been on this site for 2.5 years. I have had to increase my pred after tapering a few times. It’s been a roller coaster as many of you know. I’m now at 5 mg, I only go down 1/2 a mg a month right now. Having significant lower back pain and associated nerve pain down both legs, managed by? Heat/ volteran topical. Stretching exercise is only partially helpful. Still walking in late afternoon but it’s slow and no more than 2 mi. I’m feeling defeated and frankly down. I have underlying spine issues( stenosis lumbar and cervical) and an think it that some of this pain is now being unmasked by the lowering of the Pred. Since my leg and foot go numb intermittently when I walk/ stand. Have an ortho/ spine referral. In progress at UCSF. Ideas suggestions?

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I only have had PMR for 4 months, using 15 mgs a day. I just had an MRI and I have stenosis in L2/L3 causing nerve pain in the top of my quads. They are going to try a shot of steroids into that area to see if it will take the pain away.
I do hope that you can continue to walk as that really helps me. Hope you can get an MRI as it really helps the ortho. know what is going on. He said the prednisone helps the stenosis but it is systemic where the shot will be local and will stay in that area for months. the pain goes away for some for a year or more.

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doneville1 | @doneville1 | Oct 26, 2022
In reply to @skiing "When tapering how much food do you need to take with your prednisone in the morning...." + (show)
@skiing

When tapering how much food do you need to take with your prednisone in the morning. Currently I take it with porridge but sometimes I don’t want to get up that early. Is there something to keep by my bed that I can take at say 5 to 6 am that is easy and enough food to get the job done so I can fall back asleep

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I pack a small waterproof lunch bag with an ice pack, an Activia and a Danone immunity booster, which I keep overnight by my bed. When I wake up around 6 to go to the bathroom I go ahead and take my dose of Prednisone,

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lawhoeburg | @lawhoeburg | Oct 27, 2022

I discovered chocolate almond milk. I take my prednisone with 8 ounces in the morning. The almond milk has 35% calcium so it adds to my daily dosage of calcium for my osteoporosis.

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sharonanng | @sharonanng | Nov 5, 2022
In reply to @johnbishop "@skiing, I always had stiffness in the morning when I was tapering off of prednisone and..." + (show)
@johnbishop

@skiing, I always had stiffness in the morning when I was tapering off of prednisone and it usually went away after I was up and around for awhile. I adjusted my tapering based on pain and aching and not so much on the stiffness but each of us are different. I'm no expert but I don't think tapering monthly is too fast unless your body is telling you it is with too much pain when you do taper down.

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I am 7 months into this PMR journey and am on prednisone and hydroxychloroquine. I have not been successful with tapering by 1 mg of prednisone, so this time I tapered by .5 mg and it is working great. My plan is to stay on this for two weeks, and then try tapering another .5 mgs. I currently have stiffness in the morning that goes away very quickly as I move around. Soreness and stiffness in my hands has been my biggest issue lately and it is now much better. Due to the hydroxychloroquine? Who knows? Just grateful that something is working. Keep moving folks! We will get through this!

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queenie2030 | @queenie2030 | May 8, 2023
In reply to @tillysam "Does anyone have adrenal insufficiency due to going down on the Prednisone?" + (show)
@tillysam

Does anyone have adrenal insufficiency due to going down on the Prednisone?

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My rheumatologist just diagnosed me -with adrenal insufficiency based on my symptoms. He referred me to an endocrinologist for testing and treatment. So we will see what she says but I feel awful. After 2 and 1/2 years on prednisone I am down to 12mg one day and 13 mg the next, etc. I thought you did not get this until you are below 10 or 7 mg? I am 76 years old. Anyone else experience this?

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1 reply
priscillat | @priscillat | May 9, 2023
In reply to @queenie2030 "My rheumatologist just diagnosed me -with adrenal insufficiency based on my symptoms. He referred me to..." + (show)
@queenie2030

My rheumatologist just diagnosed me -with adrenal insufficiency based on my symptoms. He referred me to an endocrinologist for testing and treatment. So we will see what she says but I feel awful. After 2 and 1/2 years on prednisone I am down to 12mg one day and 13 mg the next, etc. I thought you did not get this until you are below 10 or 7 mg? I am 76 years old. Anyone else experience this?

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I too have been diagnosed with adrenal insufficiency. I’m at 5.5 mg; I was hoping to tough it out until my adrenal glands start working again. I have abdominal pain and body aches some days. Most days I just feel weak and tired, with bouts of nausea. I see my rheumatologist next week (she diagnosed me a month ago). My plan is to ask for another cortisol test; then in a few months, another ACTH test. If both aware improving, I’ll hang in there. If not, then I’ll ask for a referral to an endocrinologist. My understanding is the treatment for adrenal insufficiency is more prednisone or hydrocortisone - but I’d like to get my OWN adrenal function back. In the meantime, I carry 10mg prednisone in my purse in case of adrenal crisis; and I wear a medical alert bracelet.

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1 reply
12345chris | @12345chris | May 9, 2023

I was told if you come of pred too fast this is what happens.

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12345chris | @12345chris | May 9, 2023

Your afrena glands can stop working as you come off pred. Thats why its vital you taper very slowly Remember this is an auto immune desease caused by an over activenimmune systrm attacking good cells

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queenie2030 | @queenie2030 | May 9, 2023
In reply to @priscillat "I too have been diagnosed with adrenal insufficiency. I’m at 5.5 mg; I was hoping to..." + (show)
@priscillat

I too have been diagnosed with adrenal insufficiency. I’m at 5.5 mg; I was hoping to tough it out until my adrenal glands start working again. I have abdominal pain and body aches some days. Most days I just feel weak and tired, with bouts of nausea. I see my rheumatologist next week (she diagnosed me a month ago). My plan is to ask for another cortisol test; then in a few months, another ACTH test. If both aware improving, I’ll hang in there. If not, then I’ll ask for a referral to an endocrinologist. My understanding is the treatment for adrenal insufficiency is more prednisone or hydrocortisone - but I’d like to get my OWN adrenal function back. In the meantime, I carry 10mg prednisone in my purse in case of adrenal crisis; and I wear a medical alert bracelet.

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My rheumatologist told me I may never regain any adrenal function I guess due to my age, 77. I would love to have it back. I feel much like you do but with very bright facial flushing and I feel very hot most of the time, like my skin is close to a fire. I did taper slowly from 15 mg, now only down to 12 or 13 mg a day after two and a half years. Carrying some prednisone with you is a good idea in case of crisis.

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