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

Now I'm interested in Tart Cherry capsules. I have residual (non-PMR) lower back pain but I'm told that I need a lumbar fusion for that.

I'm off prednisone and on Actemra which works infinitely better for me. My rheumatologist is able to consider other causes of pain since I no longer take prednisone. When investigating why I had uric acid kidney stones, a rather high uric acid blood level was discovered. My rheumatologist thought that maybe gout was "contributing to my residual pain." My uric acid level was treated for a while but I said I didn't feel any different. The treatment for gout was stopped even though my kidney stones all but disappeared. My rheumatologist deferred to a urologist who subsequently said my uric acid level "probably" should be treated by my GP.

My uric acid level is rather high again but it isn't being treated. Maybe I should take Tart Cherry just to see what happens. They sound delicious. I love cherry pie but maybe I should stick with the capsules!

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@dadcue
The tart cherry capsules sound like a good idea. But I’ve always read that eating the actual fruit or drinking tart cherry juice has more benefits as an anti-inflammatory! Good luck and let us know how it works for you!

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@jlo2252

@dadcue
The tart cherry capsules sound like a good idea. But I’ve always read that eating the actual fruit or drinking tart cherry juice has more benefits as an anti-inflammatory! Good luck and let us know how it works for you!

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This study seems to say tart cherry juice has some health benefits.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6413159/#:~:text=In%20this%20randomized%2Dcontrolled%20clinical,needed%20to%20confirm%20these%20findings.
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I'm currently drinking apple juice by the gallon every few days. I don't know why I started drinking apple juice but it is in the refrigerator. I drink it out of the bottle because I'm the only one drinking it. It is like my body is subconsciously telling me to drink more of it every few hours. It is 50% juice and it says "light" on the bottle with no added sugars. I guess my body thinks it is beneficial but I don't know if it is good or not.

"In conclusion, despite that all mechanisms by which apple juice exerts its biological activities to prevent the development of chronic diseases are yet to be fully understood, studies overall suggest that apple juice consumption has positive effects on markers related to cardiovascular disease, cancer, neurodegenerative diseases, and probably others. The beneficial effects of apple juice are more apparent with cloudy apple juice than clear apple juice, probably due to its lower nutritional density. It is likely that whole apples are superior to apple juice. However, apple juice may constitute a convenient and easy way to increase fruit consumption and improve overall quality of the diet when consumed in moderation."
https://pmc.ncbi.nlm.nih.gov/articles/PMC8879758/#:~:text=Blood%20samples%20were%20taken%20at,apple%20and%20apple%20juice%2C%20respectively.
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I will look for tart cherry juice and buy it instead of apple juice. I will see how my body likes tart cherry juice instead of apple juice. I'm starting to think I don't want to drink apple juice anymore after I finish this gallon.

Do they sell tart cherry juice at the grocery store? That is the extent of my nutritional knowledge.

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My Publix sells bottles of tart cherry juice.

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@dadcue

This study seems to say tart cherry juice has some health benefits.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6413159/#:~:text=In%20this%20randomized%2Dcontrolled%20clinical,needed%20to%20confirm%20these%20findings.
------------------------
I'm currently drinking apple juice by the gallon every few days. I don't know why I started drinking apple juice but it is in the refrigerator. I drink it out of the bottle because I'm the only one drinking it. It is like my body is subconsciously telling me to drink more of it every few hours. It is 50% juice and it says "light" on the bottle with no added sugars. I guess my body thinks it is beneficial but I don't know if it is good or not.

"In conclusion, despite that all mechanisms by which apple juice exerts its biological activities to prevent the development of chronic diseases are yet to be fully understood, studies overall suggest that apple juice consumption has positive effects on markers related to cardiovascular disease, cancer, neurodegenerative diseases, and probably others. The beneficial effects of apple juice are more apparent with cloudy apple juice than clear apple juice, probably due to its lower nutritional density. It is likely that whole apples are superior to apple juice. However, apple juice may constitute a convenient and easy way to increase fruit consumption and improve overall quality of the diet when consumed in moderation."
https://pmc.ncbi.nlm.nih.gov/articles/PMC8879758/#:~:text=Blood%20samples%20were%20taken%20at,apple%20and%20apple%20juice%2C%20respectively.
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I will look for tart cherry juice and buy it instead of apple juice. I will see how my body likes tart cherry juice instead of apple juice. I'm starting to think I don't want to drink apple juice anymore after I finish this gallon.

Do they sell tart cherry juice at the grocery store? That is the extent of my nutritional knowledge.

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@dadcue
Thanks for the link on the tart cherry juice.
I’ve seen it in health food/whole food type stores. Haven’t looked for it in a regular market but I will. My only real concern about trying it is my diabetes. My husband and I do love the fruit, though and we do buy it when it’s in season—trying to be conservative in its consumption, but it’s so good! But with diabetics they always say to consume the fruit over the juice version of the fruit because of the high sugar content. Hopefully this juice is different—it is supposed to be unsweetened with no sugar added.

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I find my tart cherry juice at Trader Joe’s. I ride an indoor bike alot and create my own sport drink with a mix of magnesium, kombucha and tart cherry juice. Works for me!

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My husband just bought four bottles of tart cherry juice at Trader Joe’s. My only concern is the calorie count. Even unsweetened, it is 160 calories for 8 oz. I am trying so hard to lose my extra 12 lbs gained during the last nine months on P, because I am facing shoulder replacement surgery in January. Trying to lose the weight and the P by then. So I may switch to the capsules just to eliminate the calories.

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I am also weaning myself off of Prednisone. First time I was dropping 1/2 mg/week, hit the wall at 4.5 mg. No PMR but lots of pain and very tired. This time I'm paying much more attention to what I eat and it's made a huge difference. Lot's of fruit and veggies, avoid anything inflammatory. Feel better than I have in over a year. Almost no pain except in morning and down to 4mg. Don't have any of the chronic fatigue I did the first time. Hope to be off the pred by end of year

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Weaned myself off Prednisone but suffering with EXTREME fatigue. No one will believe me. Won't go back on prednisone. I look okay but have NO energy of any kind. Feel like a zombie. No one seems to be able to help me.

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@marymckeith

Weaned myself off Prednisone but suffering with EXTREME fatigue. No one will believe me. Won't go back on prednisone. I look okay but have NO energy of any kind. Feel like a zombie. No one seems to be able to help me.

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I believe you! Overwhelming fatigue is a symptom of adrenal insufficiency. Did anyone check your cortisol level before you stopped prednisone?

It isn't safe for you to wean yourself off prednisone without consulting your doctor. This is especially true if you have taken prednisone for a long time.

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@dadcue

I believe you! Overwhelming fatigue is a symptom of adrenal insufficiency. Did anyone check your cortisol level before you stopped prednisone?

It isn't safe for you to wean yourself off prednisone without consulting your doctor. This is especially true if you have taken prednisone for a long time.

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@dadcue I followed Dr orders all the way down to 1 mg. Been completely off for a week.. I have asked repeatedly for a cortisol test but they won't do it. Is it an expensive test or something? They act as if it is an unusual request. After recent blood work they say inflammation markers are high. I have had 3 Symboni infusions - the last one a week ago and have felt worse since then. They won't take me seriously and they act as though I am a hypochondriac about feeling weak. Physical therapy today and am as weak as I have ever been. They say to stay active which I try to do but with exhaustion it is almost impossible. I have 0 quality of life. I need a second opinion but don't look at me as if I am making it up. I so WANT to feel like myself again. Thanks for taking me seriously.

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