How long does it take for you to move without pain and stiffness in a.

Posted by spedld88 @spedld88, Mar 25 10:08am

I am new to PMR in the last couple months. I want to know how long it takes for others to loosen up in the a.m. I find it takes me 3-4 hours on average after I take my Prednisone. Is that normal or is my inflammation still acting up?

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I agree with @art43 because I had no elevation but strong clinical symptoms. I limped along for 5 months before they showed up. All journal articles and other well-reputed sites state clinical symptoms are the main factor to consider. I wouldn’t fiddle up and down without clear direction from a doctor. I read others have upped and downed at their own volition. I’d say that’s dangerous as this drug is bad for the body. I’m off it now but still feel stiffness but not lost functionality. That is, I can lift my arms up but they feel stiff. Same with legs. Some days are better than others but I’m getting slowly better. I have no urge to go back on it despite these inconveniences because I know it will take up to 2 years for my body to recover from this disease and what the prednisone has wrought on my body. Gentle exercise really helps. On bad days I take a Panadol but that’s rare.

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@cazwell50

I agree with @art43 because I had no elevation but strong clinical symptoms. I limped along for 5 months before they showed up. All journal articles and other well-reputed sites state clinical symptoms are the main factor to consider. I wouldn’t fiddle up and down without clear direction from a doctor. I read others have upped and downed at their own volition. I’d say that’s dangerous as this drug is bad for the body. I’m off it now but still feel stiffness but not lost functionality. That is, I can lift my arms up but they feel stiff. Same with legs. Some days are better than others but I’m getting slowly better. I have no urge to go back on it despite these inconveniences because I know it will take up to 2 years for my body to recover from this disease and what the prednisone has wrought on my body. Gentle exercise really helps. On bad days I take a Panadol but that’s rare.

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Same with me ... I never want to take Prednisone again although I would if the severe pain returned. I wouldn't take Prednisone for pain I can tolerate. I'm not interested in being "pain free" but some types of pain are intolerable.

Aquacise is what works for me. I usually spend some time in the hot tub after an hour or two of aquacise and/or swimming. Then a semi cold shower is invigorating. The recreation center I go to doesn't ever seem to have hot showers!

I was overjoyed when I discovered I could still swim and get into and out of the pool. I jump into the water. Getting out of the pool is more difficult but doable.

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@dadcue

Same with me ... I never want to take Prednisone again although I would if the severe pain returned. I wouldn't take Prednisone for pain I can tolerate. I'm not interested in being "pain free" but some types of pain are intolerable.

Aquacise is what works for me. I usually spend some time in the hot tub after an hour or two of aquacise and/or swimming. Then a semi cold shower is invigorating. The recreation center I go to doesn't ever seem to have hot showers!

I was overjoyed when I discovered I could still swim and get into and out of the pool. I jump into the water. Getting out of the pool is more difficult but doable.

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Yes, I certainly would too if I became that debilitated again. Not pleasant! I swim daily in our lap pool, which we heat for as long as possible (we have solar panels) and only turn off June-September during our winter here in Australia. We are fortunate to have renovated after retiring and had the good fortune to choose to spend a lump sum on the pool knowing that in our later years a pool would help keep us mobile. During my undiagnosed months of pmr I too found the pool worked but very difficult to get out off until I was on Prednisone. Like you, warm baths and showers work too. I have just started a personal Pilates session to rebuild strength as pmr has left me with some imbalances she is correcting. That is very useful and I should have started earlier to maintain strength during treatment. Good luck!

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@harelover

I too had morning pain until I switched my dosage to the night instead of the morning. Once I switched I was able to wake up almost pain-free. I now split my dosage equally between morning and evening. I have also just started Kevzara (3 doses) and am holding steady on 5mg. Hopefully I will be able to taper off completely with the help of Kevzara.
I would suggest that you try the night time dosage to alleviate you morning aches and pains.

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I am so glad that you decided go with Kevzara. I am off of Kevzara since mid Feb and am not taking anything except a Tylenol every couple of days. Kevzara was a God send tapering off prednisone.
Stay well, John

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@wilmingtonemperor

I am so glad that you decided go with Kevzara. I am off of Kevzara since mid Feb and am not taking anything except a Tylenol every couple of days. Kevzara was a God send tapering off prednisone.
Stay well, John

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I am about to do my fourth injection in two days so I’m currently on 5 mg of prednisone, and I’m holding pretty steady with just a few little aches and pains that I can take care of easily with Tylenol. I’ve been wanting to touch base with you to see how you were doing and I’m thrilled to know that you were able to get off of everything, I hope the same will work for me. I’m a little worried about stepping down from the 5 mg to 2.5 which is about the rate my rheumatologist wants me to go but it looks like you did the same with your taper schedule and made out fine so I’ve got my fingers crossed. You are my inspiration and my hero. Thanks for keeping up and staying in touch.

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I take prednisone just before bed. No problem in am

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@wilmingtonemperor

I am so glad that you decided go with Kevzara. I am off of Kevzara since mid Feb and am not taking anything except a Tylenol every couple of days. Kevzara was a God send tapering off prednisone.
Stay well, John

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How long in total were you on Kevzara?

From the time you started Kevzara ... how long did it take to taper off prednisone?

From what dose of prednisone did you start from when Kevzara was started?

How long did you take Kevzara after getting off Prednisone?

I know we are all different so I'm not really doing a comparison. However I was on 10 mg of Prednisone when Actemra was started. I took prednisone for 12 years and never could taper off prednisone completely during those 12 years. The duration of treatment with Prednisone also affects how long it might take a person to taper off prednisone.

After Actemra was started, it took me about 4 months to taper from 10 mg to 3 mg. When I reached 3 mg I was instructed to stay on 3 mg because my cortisol level was low. It took approximately 6 months for my cortisol level to improve while I stayed on 3 mg of prednisone.

When my cortisol level was "adequate," an endocrinologist said it would "probably be safe" to discontinue prednisone --- she implied that I could simply stop prednisone without tapering going from 3 mg to zero. It was probably another month while I tested the water before stopping prednisone completely.

From 10 mg of Prednisone to zero in less than a year after Actemra was started. Tapering off prednisone with an assist from Actemra was much easier that the 12 years that preceded Actemra.

Four years later, I still do a monthly infusion of Actemra. My rheumatologist is very reluctant to stop my treatment with Actemra. I have relapsed when Actemra was stopped so I'm not sure if Actemra will ever be stopped again. Fortunately, I don't seem to have any major side effects from Actemra.

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Mike; I was on Kevzara from October 23 until Feb 24. When I started Kevzara I was at 2.5 prednisone. I came off prednisone on Jan 9 of this year and off Kevzara on Feb 8, 24. The reason I came off Kevzara was because I was experiencing low white count (nutropenia) not by choice. However, here it is March 28 and I am just fine. A little sore when I get up but within an hour all systems are go. My measure is that when I shower I can dry my back without any help. Maybe a tylenol a couple of times a week like today. Cold and rainy.
How are you?
John

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@cazwell50

I agree with @art43 because I had no elevation but strong clinical symptoms. I limped along for 5 months before they showed up. All journal articles and other well-reputed sites state clinical symptoms are the main factor to consider. I wouldn’t fiddle up and down without clear direction from a doctor. I read others have upped and downed at their own volition. I’d say that’s dangerous as this drug is bad for the body. I’m off it now but still feel stiffness but not lost functionality. That is, I can lift my arms up but they feel stiff. Same with legs. Some days are better than others but I’m getting slowly better. I have no urge to go back on it despite these inconveniences because I know it will take up to 2 years for my body to recover from this disease and what the prednisone has wrought on my body. Gentle exercise really helps. On bad days I take a Panadol but that’s rare.

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I have to respectfully disagree with you on strictly following Doctors orders, we all want to get off Prednisone as quickly as we can without going back to severe pain and disability. The pain and disability doesnt correlate with lab results and is affected by so many other factors, some of which we can control and others we cant. Doctors can only advise based on their observations but we are the ones who live the daily nightmare and have to do our own problem solving most of the time. ..without this forum, i would still be taking 15-20mg in the morning after 7 months and still feeling dreadful. These people who adjust doses have helped me get as low as 6.5mg and still have some quality of life !

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@wilmingtonemperor

Mike; I was on Kevzara from October 23 until Feb 24. When I started Kevzara I was at 2.5 prednisone. I came off prednisone on Jan 9 of this year and off Kevzara on Feb 8, 24. The reason I came off Kevzara was because I was experiencing low white count (nutropenia) not by choice. However, here it is March 28 and I am just fine. A little sore when I get up but within an hour all systems are go. My measure is that when I shower I can dry my back without any help. Maybe a tylenol a couple of times a week like today. Cold and rainy.
How are you?
John

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I'm doing well ... thank-you John.

Your story is amazing. I often wonder what would have happened if I had taken Actemra sooner than I did. Prednisone helped me manage the pain reasonable well for 12 years but it didn't ever seem to solve the problem. My long term use of prednisone wasn't good for me.

My rheumatologist and I would have philosophical discussions. I would say prednisone "protected me" from pain. My rheumatologist would say prednisone was also "putting me at risk" for other things. We were both right depending on our perspective on things.

I currently don't take anything else for pain besides Actemra. My primary care doctor said she would prescribe something else if I needed it. She also said Actemra isn't a pain medication because it only treats inflammation. She seems to think I still should have some pain. She is right ... I have mechanical pain but it isn't the really bad inflammatory kind of pain. I probably could use some Tylenol once in a while. I'm just used to a monthly Actemra infusion and I wait until the next infusion a month later.

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