I keep relapsing when I try to get off prednisone

Posted by yeb @yeb, Jun 22 1:06pm

I was diagnosed with PMR in 2015. I keep trying to get off prednisone but every time I get to 4mg I relapse and have to go back to 15 or 20 and start over. Very discouraging. I want my life back. I have tried weekly methotrexate with the prednisone but it does not seem to help. Any suggestions would be greatly appreciated!

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@dadcue

I started atorvastatin about the same time as the three blood pressure medications. When Prednisone was stopped my cholesterol level was getting too low. Atorvastatin was decreased to half of the lowest available dose. My cholesterol level was still getting too low. An endocrinologist said I was very "sensitive" to atorvastatin even though I took it for 10 years at a higher dose while I was on Prednisone.

My rheumatologist wanted to stop atorvastatin altogether because my CK level was increasing. My rheumatologist was concerned about statin induced myopathy.

My cholesterol level rebounded slightly when atorvastatin was completely stopped. I'm now being tried on Zetia (ezetimibe) to see if it will decrease my cholesterol level a little bit but not too much. I didn't think I needed anything for my cholesterol level if I watched what I eat more closely. My endocrinologist thought I should try Zetia anyway. I think it was because I said that I like pizza once in a while.

Supposedly, Zetia works differently and shouldn't lower my cholesterol level too much.

"The most commonly used class of drugs for lowering cholesterol levels, statins, acts by preventing the production of cholesterol by the liver. Zetia has a different mechanism of action and lowers blood cholesterol by reducing the absorption of cholesterol from the intestine. It does not affect the absorption of triglycerides or fat-soluble vitamins."
https://www.medicinenet.com/lipitor_atorvastatin_vs_zetia_ezetimibe/drug-vs.htm#what_are_the_side_effects_of_lipitor_and_zetia

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That’s really interesting. I have never heard of cholesterol being too low?? I have cardiologist and a GP appointments next month. I’m going to ask them about these drugs, especially Zetia. I would love to move away from a statin, but I’m sure this has its downside, too. Thanks again for the help!

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@dadcue

"I have a lot of inflammation in my body and I’m now being tested for autoimmune diseases. I know prednisone is a big part of medication prescribed For auto immune disorders."
--------------------------------------------
I have been diagnosed with multiple autoimmune disorders. I used to take prednisone intermittently usually for a month or two. I didn't have problems with prednisone until I took it everyday for 12 years to treat PMR.

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Yeah, I’m not keen on it, no matter the length of time. But if it becomes necessary, I’m sure I’ll figure out how to deal with it. It gives me headaches, insomnia, and stomach problems. I’m sorry you’re dealing with the autoimmune stuff. I won’t be at all surprised if I come back with something as my daughter was diagnosed after her second child initially with mixed connective tissue disorder six years ago and now is being treated for scleroderma. It’s another tough illness to deal with. Take care~I hope you have more good days than bad!

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@dadcue

I started atorvastatin about the same time as the three blood pressure medications. When Prednisone was stopped my cholesterol level was getting too low. Atorvastatin was decreased to half of the lowest available dose. My cholesterol level was still getting too low. An endocrinologist said I was very "sensitive" to atorvastatin even though I took it for 10 years at a higher dose while I was on Prednisone.

My rheumatologist wanted to stop atorvastatin altogether because my CK level was increasing. My rheumatologist was concerned about statin induced myopathy.

My cholesterol level rebounded slightly when atorvastatin was completely stopped. I'm now being tried on Zetia (ezetimibe) to see if it will decrease my cholesterol level a little bit but not too much. I didn't think I needed anything for my cholesterol level if I watched what I eat more closely. My endocrinologist thought I should try Zetia anyway. I think it was because I said that I like pizza once in a while.

Supposedly, Zetia works differently and shouldn't lower my cholesterol level too much.

"The most commonly used class of drugs for lowering cholesterol levels, statins, acts by preventing the production of cholesterol by the liver. Zetia has a different mechanism of action and lowers blood cholesterol by reducing the absorption of cholesterol from the intestine. It does not affect the absorption of triglycerides or fat-soluble vitamins."
https://www.medicinenet.com/lipitor_atorvastatin_vs_zetia_ezetimibe/drug-vs.htm#what_are_the_side_effects_of_lipitor_and_zetia

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I have been taking Zetia for awhile. I thought I was having problems with atorvastatin and then pravastatin. I had fingers that would contract and lock, thumb and index finger mostly. When I stopped taking the statin, this problem stopped. Reading about statin side effects made me think the statin was the culprit. Have not had this happen since. I recently started blaming my upper leg aching on the zetia so I have temporarily stopped taking it. I did talk to my pcp about it. The upper leg aching has stopped.
Anyway, here's a short video about statin induced myopathy:
https://m.youtube.com/watch?v=2PEdByp5LyA

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@carolinlv

That’s really interesting. I have never heard of cholesterol being too low?? I have cardiologist and a GP appointments next month. I’m going to ask them about these drugs, especially Zetia. I would love to move away from a statin, but I’m sure this has its downside, too. Thanks again for the help!

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It was strange when my total cholesterol was below normal. That combined with an elevated CK level made my rheumatologist stop atorvastatin. My PCP didn't like that atorvastatin was stopped. My PCP said it can never be too low. When my lipid panel was rechecked, my total cholesterol was too high again.

My endocrinolgist took the middle ground. He said it made sense to try zetia. He said he would message my PCP with his recommendation. He said cholesterol fell into the realm of endocrinology.

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@dadcue

It was strange when my total cholesterol was below normal. That combined with an elevated CK level made my rheumatologist stop atorvastatin. My PCP didn't like that atorvastatin was stopped. My PCP said it can never be too low. When my lipid panel was rechecked, my total cholesterol was too high again.

My endocrinolgist took the middle ground. He said it made sense to try zetia. He said he would message my PCP with his recommendation. He said cholesterol fell into the realm of endocrinology.

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Statins have become controversial in many quarters. They mess with blood sugars and cause Type2 diabetes requiring medication for insulin resistance. They lower our natural production of CoQ10 (Co-enzyme Q10), an anti-oxidant that helps reduce harmful free radicals. They can harm the liver.
The sellers of statins have always expressed the miniscule benefits of taking them in terms of relative risk rather than absolute risk, to make the benefit sound bigger. It's an old trick. I dumped my statin over a year ago after reading up and discovering the benefits are grossly overstated and the harms are understated. My doctor did not object.
This article from the website of the respected RACGP (Royal Australian College of General Practitioners) says:
"Cholesterol-lowering statins are one of the world’s most commonly used medicines.
They were first approved for people with a high risk of cardiovascular disease in 1987. By 2020, global sales were estimated to have approached US$1 trillion (AU$1.35 trillion).
However, there has been an ongoing debate about whether or not statins are over-prescribed. Does everyone who takes them really benefit from them?"
https://www1.racgp.org.au/newsgp/clinical/have-the-benefits-of-statins-been-overstated

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@megz

Statins have become controversial in many quarters. They mess with blood sugars and cause Type2 diabetes requiring medication for insulin resistance. They lower our natural production of CoQ10 (Co-enzyme Q10), an anti-oxidant that helps reduce harmful free radicals. They can harm the liver.
The sellers of statins have always expressed the miniscule benefits of taking them in terms of relative risk rather than absolute risk, to make the benefit sound bigger. It's an old trick. I dumped my statin over a year ago after reading up and discovering the benefits are grossly overstated and the harms are understated. My doctor did not object.
This article from the website of the respected RACGP (Royal Australian College of General Practitioners) says:
"Cholesterol-lowering statins are one of the world’s most commonly used medicines.
They were first approved for people with a high risk of cardiovascular disease in 1987. By 2020, global sales were estimated to have approached US$1 trillion (AU$1.35 trillion).
However, there has been an ongoing debate about whether or not statins are over-prescribed. Does everyone who takes them really benefit from them?"
https://www1.racgp.org.au/newsgp/clinical/have-the-benefits-of-statins-been-overstated

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I the genetic version of cholesterol Familial hypercholesterolemia. They put me on lipitor when I was 48. I took it for 4 years with constant stomach disorders. First said I had IBS. Then changed it to Crohn's disease. Finally my colon started bleeding. Luckily my family Dr said lets take you off medication. Cleared up in a week. When I contracted PMR my Mayo Dr ran all these tests and found a carotid blockage. So I had to get serious about doing something they put me on Repatha and Zetia. I have been having hip pain, headaches, and fatigue. I quit the zetia about a week ago and already feel better. The Repatha works. PMR caused my cholesterol numbers to go from 250 to 300. Repatha dropped it to 110. My LDL is 53. Just waiting on the side effects.

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@megz

Statins have become controversial in many quarters. They mess with blood sugars and cause Type2 diabetes requiring medication for insulin resistance. They lower our natural production of CoQ10 (Co-enzyme Q10), an anti-oxidant that helps reduce harmful free radicals. They can harm the liver.
The sellers of statins have always expressed the miniscule benefits of taking them in terms of relative risk rather than absolute risk, to make the benefit sound bigger. It's an old trick. I dumped my statin over a year ago after reading up and discovering the benefits are grossly overstated and the harms are understated. My doctor did not object.
This article from the website of the respected RACGP (Royal Australian College of General Practitioners) says:
"Cholesterol-lowering statins are one of the world’s most commonly used medicines.
They were first approved for people with a high risk of cardiovascular disease in 1987. By 2020, global sales were estimated to have approached US$1 trillion (AU$1.35 trillion).
However, there has been an ongoing debate about whether or not statins are over-prescribed. Does everyone who takes them really benefit from them?"
https://www1.racgp.org.au/newsgp/clinical/have-the-benefits-of-statins-been-overstated

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I have taken statins since 2020. I started with pravastatin and after extreme hair loss was changed to rosuvastatin. I can say my cholesterol has dropped yearly, but I do not know if it is due to the medication solely or my change in lifestyle. During my last visit with my GP, he told me that older folks are frequently able to drop medication as they are no longer needed. He was unable to explain the reason for this, but I found it to be true. Sadly, if we don’t say anything about this, the prescriptions will continue to be written. I also dropped an antacid that I was certain after three years had been giving me stomach pains and have felt no symptoms of Gerd at all since I did this six months ago. Last month I stopped taking the beta blocker that supported my Losartan. Evidently, two different types of BP meds are frequently described. My blood pressure has been fine and my heart rate has moved into a much more acceptable number, as the beta blocker had taken it to the 50s most days, which is not good. So, sorry for the long story, but to finally answer your question… I honestly cannot say for sure how many points the statin has helped to lower my cholesterol. I do know that the initial number in 2020 was about 150 points higher than it should’ve been. It is now completely under control. I may go without it for a year and see what happens. I am 72 years old and because I have an ascending aortic aneurysm, it is imperative that I control blood pressure especially, but cholesterol as well. I feel like my age has brought about enough good eating habits for other reasons that my cholesterol may fall in line without medication. I no longer drink alcohol, I don’t eat many bad fats at all, the only fried foods are air fried, and my beloved sweets are no longer part of my diet, except in a rare exception. Sweets and wine used to be a food group for me, but I’ve gotten used to living without them. I’m sorry if I ramble and I’m really no help at all, but this has been my experience. I hope you find what works for you and that it is a statin free world! Good luck!

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@carolinlv

I have taken statins since 2020. I started with pravastatin and after extreme hair loss was changed to rosuvastatin. I can say my cholesterol has dropped yearly, but I do not know if it is due to the medication solely or my change in lifestyle. During my last visit with my GP, he told me that older folks are frequently able to drop medication as they are no longer needed. He was unable to explain the reason for this, but I found it to be true. Sadly, if we don’t say anything about this, the prescriptions will continue to be written. I also dropped an antacid that I was certain after three years had been giving me stomach pains and have felt no symptoms of Gerd at all since I did this six months ago. Last month I stopped taking the beta blocker that supported my Losartan. Evidently, two different types of BP meds are frequently described. My blood pressure has been fine and my heart rate has moved into a much more acceptable number, as the beta blocker had taken it to the 50s most days, which is not good. So, sorry for the long story, but to finally answer your question… I honestly cannot say for sure how many points the statin has helped to lower my cholesterol. I do know that the initial number in 2020 was about 150 points higher than it should’ve been. It is now completely under control. I may go without it for a year and see what happens. I am 72 years old and because I have an ascending aortic aneurysm, it is imperative that I control blood pressure especially, but cholesterol as well. I feel like my age has brought about enough good eating habits for other reasons that my cholesterol may fall in line without medication. I no longer drink alcohol, I don’t eat many bad fats at all, the only fried foods are air fried, and my beloved sweets are no longer part of my diet, except in a rare exception. Sweets and wine used to be a food group for me, but I’ve gotten used to living without them. I’m sorry if I ramble and I’m really no help at all, but this has been my experience. I hope you find what works for you and that it is a statin free world! Good luck!

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My Mayo cardiologist tested me for genetic cholesterol. He said you cannot cure it without help. I had always tried my diet and went on keto for years. No change. They then found blockage during my PMR testing. So you may not be able to help the numbers. I think they quit prescribing drugs as we get older knowing EOL is near. lol.

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@tuckerp

My Mayo cardiologist tested me for genetic cholesterol. He said you cannot cure it without help. I had always tried my diet and went on keto for years. No change. They then found blockage during my PMR testing. So you may not be able to help the numbers. I think they quit prescribing drugs as we get older knowing EOL is near. lol.

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I hope that’s not too near! My doctor did not stop prescribing. I told him I wasn’t going to take them anymore and asked for his support. I did at least wait for him to agree that it could work. I don’t pretend to know more than they do by any means, but if you don’t know where you stand without them, I’m at the point where I want to find out. If that cholesterol jumps back up, I’ll be right back on that medication! My mom had extremely high cholesterol, and she was eventually able to tame it with diet changes. My doctor has suggested mine is probably genetic. Do you think my mom would have been able to control hers by herself if it were a genetic issue?

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@carolinlv

I hope that’s not too near! My doctor did not stop prescribing. I told him I wasn’t going to take them anymore and asked for his support. I did at least wait for him to agree that it could work. I don’t pretend to know more than they do by any means, but if you don’t know where you stand without them, I’m at the point where I want to find out. If that cholesterol jumps back up, I’ll be right back on that medication! My mom had extremely high cholesterol, and she was eventually able to tame it with diet changes. My doctor has suggested mine is probably genetic. Do you think my mom would have been able to control hers by herself if it were a genetic issue?

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Yeah not sure. I am not sure I believe the Dr either. I am not sure how he arrived at genetic either. I know he did some special test and told me to tell my family to get tested. I tried all sorts of things and would only change it 10pts either way. So thats what made me believe him. Plus I had blockage. So it was time for me to do something.

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