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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@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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This is my second round of PMR. I used to make myself get up early, eat breakfast, just to take the prednisone. I usually was stiff and sore until some time in the afternoon. Then I felt great until bed time. I recently started taking my prednisone (currently 7 mg) in the middle of the night, when I wake up to use the bathroom. I only eat about 1/2 ounce of cheese (which I keep on my. Nightstand), and that is enough. Game changer: I wake up without any pain or stiffness - and usually feel good straight through bedtime. It’s taken me 3 years to figure this out.

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@virginiaj

I have read many opinions on tapering and there is a separate thread about it. There is a method that is called the English method that someone describes in detail. Basically, you keep alternating old dose and new dose until you are on new dose. This is my 3rd bout of PMR, so I have tried lots of methods. I have found that the lower the dose, the harder it gets to lower it. I used to work with endocrinologists and they told me that at the low doses, your body has been treating the prednisone as a replacement and it takes awhile for the adrenal glands to kick in production again. Currently, I will be on prednisone 2 years next month, have been reducing from 4 to 3 mg for the past 3 weeks. I am now taking 3 mg for 2 days, then 4 for one day. I always either split my dose of prednisone or take it all about 6 PM with my supper. I do get stiffness in the evening, but I am a morning person and feel good in the AM with the prednisone in the evening. My rheumatologist is good with all this and my inflammatory markers are staying down. I feel I will get to 3 in a week or two and then stay there for at least a month before trying to decrease again. Patience and a physician who listens is the key. The first time I had PMR, I was on prednisone 2 years, followed by remission of 12 years, the second time I was off in 10 months, but the PMR recurred big time 8 months later, but in retrospect, I think it was not really gone as I had all sorts of strange symptoms which I attributed to other things. This time I am taking my rime

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Does anyone know where I can find more information about the “English method” of tapering? I’m at 4 mg and stumbled onto alternating days 4/0mg by accident, and another person’s experience in this blog. it’s been working great for a couple weeks but now my shoulders are really painful. Not quite sure how to approach it.

I’m at a cross road because I love how the rest of my body feels (especially my mental state) but the shoulder pain is pretty debilitating.

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@jmcc

Does anyone know where I can find more information about the “English method” of tapering? I’m at 4 mg and stumbled onto alternating days 4/0mg by accident, and another person’s experience in this blog. it’s been working great for a couple weeks but now my shoulders are really painful. Not quite sure how to approach it.

I’m at a cross road because I love how the rest of my body feels (especially my mental state) but the shoulder pain is pretty debilitating.

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Is this the one you mean? I've never tried it but others may have tapered using this method.

"Sep 1, 2021 — Another technique is known as an alternate-day taper. For example, instead of simply lowering the dose from 4 mg to 3 mg of prednisone, a ... " -- How to Reduce Prednisone Withdrawal Symptoms:
-- https://www.verywellhealth.com/does-prednisone-tapering-minimize-withdrawal-190242

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@johnbishop

Is this the one you mean? I've never tried it but others may have tapered using this method.

"Sep 1, 2021 — Another technique is known as an alternate-day taper. For example, instead of simply lowering the dose from 4 mg to 3 mg of prednisone, a ... " -- How to Reduce Prednisone Withdrawal Symptoms:
-- https://www.verywellhealth.com/does-prednisone-tapering-minimize-withdrawal-190242

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Thanks John! I appreciate the New Year’s Day response :-). I’ll try 4/2 and see where that takes me.

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@jmcc

Does anyone know where I can find more information about the “English method” of tapering? I’m at 4 mg and stumbled onto alternating days 4/0mg by accident, and another person’s experience in this blog. it’s been working great for a couple weeks but now my shoulders are really painful. Not quite sure how to approach it.

I’m at a cross road because I love how the rest of my body feels (especially my mental state) but the shoulder pain is pretty debilitating.

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I thought I found the “English Method” of decreasing prednisone on this forum, but can’t find it anymore. It basically is a method of decreasing prednisone very gradually. Instead of decreasing to a new dose, even by 1 or 1/2 mg, you alternate between new and old dose, gradually taking new dose more often until you are completely on it. I usually put the dose I take on a calendar so I don’t forget. The lower the dose is, the more gradual the reduction. As an example, I am now on 3 mg and have been on this dose about 6 weeks. Soon, I will begin taking 2 mg one day a week. When that works, I will go to 2 mg twice a week and 3 the rest. It will probably take me 6-8 weeks to get to the 2 mg dose. When dose is this low, may even need to go to 2 1/2 instead of 2. 2 years ago, at this time, I was at 10mg, last year 5 mg, this year 3. I had to go up to 6 in March when I got my 2 Moderna shots, but didn’t need to with the booster. It is slow, but hope to eventually get to remission, this is my 3rd bout of PMR. With the first, I went slow and was in remission 12 years, with the second, I went quickly and was in remission 10 months. Everyone is different, but this works for me. Takes a lot of patience.

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This is what I think you are looking for...it has been used by many to taper:
https://healthunlocked.com/pmrgcauk/posts/private/140530214/dl-simple-taper-plans
The UK PMR forum on healthunlocked is a great resource. Dorset Lady (the dl in the link) has several tapering plans but the one that's most often written about is the DSNS version (dead slow..)

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@virginiaj

I thought I found the “English Method” of decreasing prednisone on this forum, but can’t find it anymore. It basically is a method of decreasing prednisone very gradually. Instead of decreasing to a new dose, even by 1 or 1/2 mg, you alternate between new and old dose, gradually taking new dose more often until you are completely on it. I usually put the dose I take on a calendar so I don’t forget. The lower the dose is, the more gradual the reduction. As an example, I am now on 3 mg and have been on this dose about 6 weeks. Soon, I will begin taking 2 mg one day a week. When that works, I will go to 2 mg twice a week and 3 the rest. It will probably take me 6-8 weeks to get to the 2 mg dose. When dose is this low, may even need to go to 2 1/2 instead of 2. 2 years ago, at this time, I was at 10mg, last year 5 mg, this year 3. I had to go up to 6 in March when I got my 2 Moderna shots, but didn’t need to with the booster. It is slow, but hope to eventually get to remission, this is my 3rd bout of PMR. With the first, I went slow and was in remission 12 years, with the second, I went quickly and was in remission 10 months. Everyone is different, but this works for me. Takes a lot of patience.

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Thanks so much!!

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@kmeikle1

This is what I think you are looking for...it has been used by many to taper:
https://healthunlocked.com/pmrgcauk/posts/private/140530214/dl-simple-taper-plans
The UK PMR forum on healthunlocked is a great resource. Dorset Lady (the dl in the link) has several tapering plans but the one that's most often written about is the DSNS version (dead slow..)

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Thank you. I remember Dorset Lady. I couldn’t remember where I had seen it. It is slow and requires patience, but I found tapering more quickly hasn’t worked well for me. My rheumatologist is fine with this method. At this point, I get about 300 1 mg tablets at a time and let her know when I will need more. Labs drawn about every 4 months.

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Let us know how you progress. Right now I'm stuck at 10 mgs. Diagnosed in 2019 and the lowest I've been is 8 mg. Didn't fare well there. Will try 9.5 using a slow taper starting in February if all goes well. The best to you.

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Hi all. I have PMR and Giant Cell Arteritis. I started on 40 mg of Prednisone in late May and was just taking 5 mg Prednisone for the last month. All my pain and wierd symptoms are gone. I saw my Rheumatologist yesterday who said that the taper gets a little tricky now in that it goes down by 1 mg a month for the next few months. I'm starting the taper today, down to 4 mg. I have a large supply of 1 mg pills now. Best to you all, Teri

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