Weaning off of prednisone & pain management

Posted by joan7 @joan7, Feb 25 9:11am

Last Tuesday, I went down from 7.5 mg of Prednisone down to 5 mgs. For the past 4 days my pain level has been a 12 out of 10. I could barely walk. Although I hate to take Advil, Motrin, etc., I took 2 Advil Gels and within 1 hour I felt better (not perfect, but a lot better). Hours later the pain started to come back but was maybe a 6 out of 10. The next morning I was crippled by the pain all over again. I forced myself to get moving, but could barely get around. Drank a lot of ice water, and before I went to bed, I raised the head part of my bed up and fell asleep. Woke up this morning with very little pain. Has anyone experienced any type of correlation between raising your head up vs laying flat, and the amount of pain you will experience? Had that slight change made that much of a difference in your pain level? I have found that drinking almost all my drinks with a lot of ice, definitely helps with internal inflammation. What are your experiences or thoughts regarding this matter? Thanks!

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@dadcue

"Had to add a dose in the night to control pain. 3 years of prednisone and i'm at 6 mg now. This getting off is not easy!"

It took me more than 12 years to get off prednisone. Just be mindful that at 7 mg and less is when adrenal insufficiency comes into play. It might be hard to "stimulate" the adrenals when you take a Prednisone dose at night. I understand the pain at night is a problem.

You have to maintain a low enough prednisone dose for your body to sense a low cortisol level. This will help the adrenals to know that it is time to produce cortisol again.

Adrenal insufficiency is also a painful experience to contend with. At lower doses of prednisone it might be a combination of PMR and prednisone withdrawal pain.

You are absolutely correct --- getting off prednisone isn't easy. I'm not so sure adding a dose at night will help the problem of adrenal insufficiency. Cortisol levels are supposed to drop during the night. A Prednisone dose at night might suppress adrenal function even more.

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Thanks for your input.

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@pmrsuzie

oldbtstlshrp2, thank you for the well wishes. We'll have to research the turmeric supplement. The injections he got in his hands were painful but he's feeling better now. The only cream he might use would probably be unscented aspercreme.

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Aspercreme works well for me for pain in my shoulders and thighs and has no harsh effects on skin.

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Anyone switch to hydrocortisone tablets to do a very slow Taper at 1 or 2 mg of prednisone?

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@ill

I split my dose also and also take a small dose between 12 and 3 am to prevent morning pain and stiffness. I take tramadol as needed for pain. Had to add a dose in the night to control pain. 3 years of prednisone and i'm at 6 mg now. This getting off is not easy!

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So sorry for your aggravating pain. I have been taking Tramadol for my failed back surgeries since 2014, off & on and discovered when possible to not take for a couple of days, or al least reduce it during a days time. This makes it more effective for me, otherwise, after a while I take 2 at a time to achieve pain relief results. Tramadol helps me for my reduction or Prednisone, now down to 10mg.
Keep the Faith.

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@oldbtstlshrp2

So sorry for your aggravating pain. I have been taking Tramadol for my failed back surgeries since 2014, off & on and discovered when possible to not take for a couple of days, or al least reduce it during a days time. This makes it more effective for me, otherwise, after a while I take 2 at a time to achieve pain relief results. Tramadol helps me for my reduction or Prednisone, now down to 10mg.
Keep the Faith.

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I understand totally your use of an opioid, Tramadol, for post back surgical pain. My husband had back surgery over 10 years ago and he now has arthritis pain as well. So he has been taking Percocet all this time. I have PMR, arthritis and RLS and take Percocet as well. We are both under the care of pain management doctors. I can’t take NSAIDS because I’m currently on prednisone. I do occasionally substitute ESTylenol 500 mg rapid release capsules instead of the Percocet.
I know that opioids have a negative impression because of the fear of dependency and overdose, but are safe if you take them as prescribed by your doctor.
Wishing you well on your health journey.

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I saw my rheumatologist on Monday. When I first went to her I loved her. At my Monday appt. I felt she was brushing off some of my concerns. So I was disappointed. Anyway, she wants me to take my 2.5mg dose of prednisone for a couple of weeks and then go every other day. After a couple of weeks, she wants me to quit prednisone completely. She also wants to change my Kevzara injections to every 3 weeks. This seems a little quick to me. I will try her orders but I'm afraid I will have a flare. I still have stiffness in my shoulders and arms. Any thoughts would be appreciated from this great group of people! BTW my blood markers come back normal.

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@besmith57

I saw my rheumatologist on Monday. When I first went to her I loved her. At my Monday appt. I felt she was brushing off some of my concerns. So I was disappointed. Anyway, she wants me to take my 2.5mg dose of prednisone for a couple of weeks and then go every other day. After a couple of weeks, she wants me to quit prednisone completely. She also wants to change my Kevzara injections to every 3 weeks. This seems a little quick to me. I will try her orders but I'm afraid I will have a flare. I still have stiffness in my shoulders and arms. Any thoughts would be appreciated from this great group of people! BTW my blood markers come back normal.

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I don't have any experience with Kevzara. I have taken Actemra for PMR for a long time. Kevzara and Actemra are similar and worked basically the same way. Both Kevzara and Actemra are both IL-6 inhibitors.

I can tell you that it took me about 6 months to taper from 10 mg down to 3 mg of Prednisone. I had to stay on 3 mg of Prednisone for another 6 months because of adrenal insufficiency. I was referred to an endocrinologist who I still see because of side effects from long term Prednisone use. My long term Prednisone use was 12 years.

The duration of prednisone use impacts how soon you may be able to taper off Prednisone. This is due to adrenal insufficiency and also whether or not PMR is in remission. If your adrenals don't recover very soon, you may have a need to continue replacing cortisol with Prednisone.

When my cortisol level improved, my endocrinologist said I could stop taking Prednisone. She said no tapering was necessary from 3 mg to zero as long as my cortisol level was adequate.

I did a fast taper from 3 mg to zero in a week or two. I understand your reluctance to taper too quickly because doing a "slow taper" was all I was ever told to do. However, I was able to discontinue Prednisone quickly once my cortisol level improved and PMR was in remission. Both things need to happen!

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@dadcue

I don't have any experience with Kevzara. I have taken Actemra for PMR for a long time. Kevzara and Actemra are similar and worked basically the same way. Both Kevzara and Actemra are both IL-6 inhibitors.

I can tell you that it took me about 6 months to taper from 10 mg down to 3 mg of Prednisone. I had to stay on 3 mg of Prednisone for another 6 months because of adrenal insufficiency. I was referred to an endocrinologist who I still see because of side effects from long term Prednisone use. My long term Prednisone use was 12 years.

The duration of prednisone use impacts how soon you may be able to taper off Prednisone. This is due to adrenal insufficiency and also whether or not PMR is in remission. If your adrenals don't recover very soon, you may have a need to continue replacing cortisol with Prednisone.

When my cortisol level improved, my endocrinologist said I could stop taking Prednisone. She said no tapering was necessary from 3 mg to zero as long as my cortisol level was adequate.

I did a fast taper from 3 mg to zero in a week or two. I understand your reluctance to taper too quickly because doing a "slow taper" was all I was ever told to do. However, I was able to discontinue Prednisone quickly once my cortisol level improved and PMR was in remission. Both things need to happen!

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Thank you for your response. I have no idea how my adrenal glands are doing. Hopefully all goes well for me. I have been on prednisone since February. So happy for you that you're off prednisone.

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@besmith57

I saw my rheumatologist on Monday. When I first went to her I loved her. At my Monday appt. I felt she was brushing off some of my concerns. So I was disappointed. Anyway, she wants me to take my 2.5mg dose of prednisone for a couple of weeks and then go every other day. After a couple of weeks, she wants me to quit prednisone completely. She also wants to change my Kevzara injections to every 3 weeks. This seems a little quick to me. I will try her orders but I'm afraid I will have a flare. I still have stiffness in my shoulders and arms. Any thoughts would be appreciated from this great group of people! BTW my blood markers come back normal.

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I understand why doctors want us off the Prednisone ASAP, after being punished by it for my severe contact of PMR flairs. Initially I thought Prednisone was the Cat's Meow. I felt better than I can recall over the past 3 years or more. Then side effects set in and I wish I would have known the Prednisone effects. Along with doctors, I totally agree to get off that is never too soon. The damage long term is literally deadly. My bloodwork initially was normal for the PMR specific tests, but way off for blood sugars, white count and more. Isn't it aggravating to visit our doctor to notice they seem to not realize the chronic painful discomfort we are in? If only every doctor during initial training had to personally experience the disease or malady they treat; perhaps it would be a better world?
Best wishes with your riddance of Prednisone.

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@jlo2252

Aspercreme works well for me for pain in my shoulders and thighs and has no harsh effects on skin.

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Without offense, as a question; if any topical applied to the skin is absorbed by your organs. If we are not allowed to ingest Aspirin or Ibuprofen orally; does this not apply also to our skin, the largest membrane of our body? My Rheumatologist suggested I use the Voltaren topical 4 times per day. Pure concentrated high strength Ibuprofen NSAID, not for me. If we can get lead poisoning from handling lead with our hands or the fumes from it melting on our skin, is it not probable to suffer side effects from Aspirin as a topical? I use the Icy-Hot roll on on my shoulders and lower back, but it is a bit harsh on sensitive skin areas. I sympathize and understand your need for additional relief and comfort and use of topicals. It seems hard to win this battle, but we must keep trying.
Best Wishes

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