Anyone have discomfort or pain when tapering off prednisone?

Posted by monami @monami, Apr 7, 2022

I am currently on a 3 dose of prednisone. I have some shoulder discomfort that goes down my back on either side. The left side is worse than the right. Anyone else experience back issues? It tends to go away by 3 or 4 pm. Thanks to all! We will get over this thing!

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@tuckerp

I took DEX for myself. I had self diagnosed myself and I had Dex available. So I tried it and it worked in 4 hours. Dex stays in your system a little longer than Prednisone. About 20-22 hrs vs 8-10 of prednisone. Its also about 5 times stronger. Dex is still a corticosteroid just like prednisone. It replaces your natural cortisol production with a synthetic version. Dont be fooled that your doing better because of dosage. You will still have trouble getting below the taper point. If it was 5 of prednisone it will be .75 of Dex. I hit the taper wall at 1mg then just fought through it. When you say doing much better on DEX I assume your taking more that the 1mg. There is no difference in what it will do to your body. Here is chart.
https://emupdates.com/wp-content/uploads/2009/11/ICUPocketGuide.pdf-page-53-of-63.jpg

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Thanks for chart and info. I am taking dex 2mg am and pm. Now will do am dose and cut pm to 1 mg stopped prednisone 10 mg when starting dex. 3 1/2 years of pain have really enjoyed new mobility etc. but will lower starting now. Thanks again

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@tuckerp

You should have been jittery. Probably on cloud 9. Your taking 4mg of dex. Plus a split dose so you are keeping your cortisol pumped to the top. 4 mg is equivlent to about 22-24mg prednisone. I saw in one of your messages you were taking 5mg prednisone. Thats about .75 of dex. You have not done yourself any favors. They prescribe 4mg for brain tumor inflammation.

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Dex 2 mg am and 2 at night. Now with feedback. Will do 1 mg at night and 2 mg am. And see how it goes. Stopped prednisone when starting dex. Thanks really appreciated your feedback

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@1942marilyne

Dex 2 mg am and 2 at night. Now with feedback. Will do 1 mg at night and 2 mg am. And see how it goes. Stopped prednisone when starting dex. Thanks really appreciated your feedback

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your welcome. If you were on 10mg prednisone thats 2mg of dex. Try to get as low as you can before the pain but getting off is better. Once your off then things calm down. DEX has a half life greater than 24hrs. You dont really have to split the dose. I had to much trouble sleeping at night with an evening dose. But the morning dose will last all day.

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Thanks again that is what I am going to do

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@tuckerp

I can try to help. Just my info from here and google search. I have not taken Kevzara. There are a couple of drugs that can now be used for PMR inflammation. Kevzara and Acterma. Both are IL-6 inhibitors. Acterma works better with GCA. Since cortisol production is causing your inability to taper due to steroids, these biologics are being added to help prevent PMR flares. This helps with your steroid taper. However neither of drugs will work if its not PMR. They also do nothing for cortisol. So your pain most likely will persist when trying to taper. Others on here have said just that. Drug was not helpful. Many have also said their liver function tests were troublesome. Others have said its expensive and not easy to get. Next to an immune blocker like Methotrexate I have not seen where much else works but a very slow taper. The problem is your body producing cortisol.

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This is very helpful thank you and after nearly 2 years it is the conclusion I have come to am now doing 2mg and 1mg on alternate days and sore and flu like but want to be off it. This site has been helpful in that the difficulties with a taper of prednisone are not uncommon and that slow and steady is best and tolerating discomfort, thank you again.

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@victoriab

This is very helpful thank you and after nearly 2 years it is the conclusion I have come to am now doing 2mg and 1mg on alternate days and sore and flu like but want to be off it. This site has been helpful in that the difficulties with a taper of prednisone are not uncommon and that slow and steady is best and tolerating discomfort, thank you again.

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Prednisone and PMR are like a bad marriage. They both love each other but end up not being good for each other. Your so close to the end. Assuming your on prednisone. 2mg of dex is 10mg prednisone. But either way its slow and steady. There really are not any drugs for making your body restart cortisol. You have to just keep coaxing it to do so.

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@tuckerp

Prednisone and PMR are like a bad marriage. They both love each other but end up not being good for each other. Your so close to the end. Assuming your on prednisone. 2mg of dex is 10mg prednisone. But either way its slow and steady. There really are not any drugs for making your body restart cortisol. You have to just keep coaxing it to do so.

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It was more like a 3-way relationship with me in the middle. That relationship was toxic from the start.

Now it is just Actemra and me. We have a compatible relationship as long as Prednisone and PMR don't interfere.

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@dadcue

It was more like a 3-way relationship with me in the middle. That relationship was toxic from the start.

Now it is just Actemra and me. We have a compatible relationship as long as Prednisone and PMR don't interfere.

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Yes , The child is always the loser. Glad you pulled through.

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@tuckerp

Prednisone and PMR are like a bad marriage. They both love each other but end up not being good for each other. Your so close to the end. Assuming your on prednisone. 2mg of dex is 10mg prednisone. But either way its slow and steady. There really are not any drugs for making your body restart cortisol. You have to just keep coaxing it to do so.

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Yes prednisone not dex thanks for support

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@besmith57

I have back pain all day. I had a double spinal fusion in 2022 with very bad osteoporosis. The prednisone really scares me because of my bones. I was thinking of trying the spinal nerve block but now I can't because of the steroids. I truly believe my back pain is from my PMR. My rheumatologist doesn't think that's the case. I just know when I was at 10 mg my pain was so much better. I can't even go for a walk without terrible pain. I now take 7,5 mg one day and 5mg the next. I'm also taking methotrexate 12.5mg weekly. I don't feel any different on it.

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Now my doctor wants me to taper from 7.5 mg to 6 mg for a week then down to 5mg. I think that is too fast to taper. I take methotrexate {which I don't think is doing anything) plus I've had one injection of Kevzara. Does anyone think that's too fast?

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