Aches and pains , what would you do ?

Posted by ronludington @ronludington, Jan 10 8:55am

For PMR, (had it for 7 years) I've been on Kevzara for 4 months reducing from 7.5 to 5 mg of pred. The kevzara was finally starting to help . Then the dreaded lab test showed my wbc a bit under the normal low range. (4.6 from the rangrange 5.1- 10.8) And my liver enzymes a bit high (alt of .63, ast of 50) So my rheumatologist said to skip a month of kevzara to see if my numbers normalized., if they do I can go back on kevzara ... so I wake up now stiff and hurting, rheumatologist says stay at 5 mg. I go for my blood work 10 days from now on the 20th. So 10 more days of pain. I could use some tylenol , but I hate to use it everyday. Hot shower helps some, massaging helps some. I dont sleep well, as an example, I keep a glass of water on my night stand as sometimes I will wake up with what I call Cotton mouth. I'd rather lay there and suffer than reach for that glass. (I know it's going to hurt)

well that's enough whining, I'll just have to tough it out until my bloodwork gets done. I may just take a 7.5 today for some relief.... uuuugh.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Before you start taking Tylenol or one of the NSAIDs Be sure to have your PCP check your liver and kidney functions if you’re up in age. The NSAIDs can harm your kidneys and the Tylenol in large doses is not great for your liver. Before I got on prednisone I was taking Advil to try to lessen the generalized pain from PMR. My urologist told me it was the worst thing I could do for my kidneys.

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Profile picture for rhb80 @rhb80

Before you start taking Tylenol or one of the NSAIDs Be sure to have your PCP check your liver and kidney functions if you’re up in age. The NSAIDs can harm your kidneys and the Tylenol in large doses is not great for your liver. Before I got on prednisone I was taking Advil to try to lessen the generalized pain from PMR. My urologist told me it was the worst thing I could do for my kidneys.

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@rhb80 , yesi have my numbers checked, I don't ever take nsaids but tylenol I do take once in a while. I try to limit it to one 500 mg at most every other day.

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Profile picture for ronludington @ronludington

@dadcue I was on and off a few times, I would reduce to 0 and then a few months later the pmr would return. The first taper 60 to 0 went pretty well. I had roughly 5 months of being free before it came back.
But I agree, I may some adrenal insufficiency, but they don't want to check fir that.

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@ronludington I have a similar experience, I have been off prednisone just for a month now and I asked my rheumatologist to send me for an ACTH test and he refused saying there is no evidence of adrenal insufficiency, meanwhile the pain is worse than ever, I don’t understand why they don’t help and just let you get the testing done, even just to satisfy your curiosity and reduce your stress, it’s baffling to me the lack of actual ‘caring’ about people’s experiences, it’s not just physical is something they don’t seem to grasp, just my experience.

I have recently purchased the Eli cortisol saliva tests to see what I can figure out myself regarding my natural cortisol pattern and concentrations.

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Profile picture for rosi75 @rosi75

@ronludington I have a similar experience, I have been off prednisone just for a month now and I asked my rheumatologist to send me for an ACTH test and he refused saying there is no evidence of adrenal insufficiency, meanwhile the pain is worse than ever, I don’t understand why they don’t help and just let you get the testing done, even just to satisfy your curiosity and reduce your stress, it’s baffling to me the lack of actual ‘caring’ about people’s experiences, it’s not just physical is something they don’t seem to grasp, just my experience.

I have recently purchased the Eli cortisol saliva tests to see what I can figure out myself regarding my natural cortisol pattern and concentrations.

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@rosi75 wow. I didn't know there was a test that we could buy.
I'll look into that too.
If you can, let me know how that goes .

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Profile picture for engramb318 @engramb318

I'm Billy B and first time posting. 77yo male on 5 mg pred that wears off in pm. 1 tab of ibuprofen gives me decent rest at night . Has anyone ever used celebrex vs ibuprofen to go along with pred for the aches and discomfort?

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@engramb318 Hi, I was just diagnosed with PMR. My rheumatologist made very clear not to take any type of ibuprofen along with your prednisone. Please talk to your rheumatologist to confirm this as I understand it can be dangerous. Best to you in your journey.

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Profile picture for franklinlala @franklinlala

@engramb318 Hi, I was just diagnosed with PMR. My rheumatologist made very clear not to take any type of ibuprofen along with your prednisone. Please talk to your rheumatologist to confirm this as I understand it can be dangerous. Best to you in your journey.

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@franklinlala
its ok to take Tylenol for Arthritis with Prednisone, per my DR

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Profile picture for tweetypie13 @tweetypie13

@franklinlala
its ok to take Tylenol for Arthritis with Prednisone, per my DR

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@tweetypie13 Yes, thank you, my doctor said the same thing. Unfortunately it was not effective with my pain.

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Profile picture for franklinlala @franklinlala

@tweetypie13 Yes, thank you, my doctor said the same thing. Unfortunately it was not effective with my pain.

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@franklinlala
So,sorry…..mine said it was ok to take up to 2 💊 upto 3 x a day

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Profile picture for rosi75 @rosi75

@ronludington I have a similar experience, I have been off prednisone just for a month now and I asked my rheumatologist to send me for an ACTH test and he refused saying there is no evidence of adrenal insufficiency, meanwhile the pain is worse than ever, I don’t understand why they don’t help and just let you get the testing done, even just to satisfy your curiosity and reduce your stress, it’s baffling to me the lack of actual ‘caring’ about people’s experiences, it’s not just physical is something they don’t seem to grasp, just my experience.

I have recently purchased the Eli cortisol saliva tests to see what I can figure out myself regarding my natural cortisol pattern and concentrations.

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@rosi75 Please keep us updated on your Eli self testing experience. We live in our bodies, not the doctors
I was reflecting, just yesterday, and thinking that PMR doctors should have experienced PMR themselves. I think my rheumatologist is still performing like she is still in school performing for a teacher or perhaps attempting to prove to someone that she is adhering to a preferred standard of protocol.
We, with PMR is different for each one of us. Often extreemly different.
Thanks for sharing. Best of luck and keep us updated.

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I’m down to 3 mg pred. Morning aches and pains stink. Some days worse than others. I’ll take a couple Tylenol not sure it helps. I really don’t want to take any higher pred. I want off it!! Any other suggestions? What has helped you folks other than more meds!! Thx

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