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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@tadatada1

I have finally reached zero prednisone starting today ( 20 weeks starting at 10 mg ) As I tapered off this time I started kevzara The pain I have now is different. My medial knees my butt cheeks and neck but not scapular. I cannot get up from the floor and climbing steps is difficult due to week legs My blood test this week dropped to 2.8 from 3.4 two weeks ago 4 weeks ago 2.4 and 6 weeks ago 3.8 for WBC In the past when I tapered off prednisone and my PMR returned my sed rate increased. Right now my pain is different and my sed rate is < 1 I have gained weight. I am afraid dr will tell me to stop kevzara due to low WBC I really was hoping my weight and most pain will decrease when adrenals start working and produce cortisol
Hope the call from dr will not stop Kevzara

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Having a low WBC while on Kevzara might be "transient." I experienced mild neutropenia on Actemra which is another IL-6 inhibitor similar to Kevara. My rheumatologist said neutropenia is a common side effect of IL-6 inhibitors, but not usually associated with an increased risk of infections.

It might not be necessary to completely stop Kevzara because of a low WBC. Sometimes skipping an injection rather than completely stopping Kevzara is all that is needed.

Congratulations on getting to zero Prednisone. I hope things continue to improve. Prednisone has a way of masking pain that isn't always caused by PMR. When I got off prednisone there were some underlying conditions that I didn't know I had. Those underlying conditions are being treated with other interventions.

I have remained Prednisone free for the past 3 years and my overall health has improved dramatically. The improvement in my overall health didn't happen as soon as I stopped prednisone---it took some time.

I still do a monthly infusions of Actemra to treat PMR. I took Prednisone daily for more than 12 years for PMR. It was a great feeling to finally discontinue Prednisone. I know my adrenals appreciate not being suppressed all the time by Prednisone.

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I am slow tapering - 1 mg every 4 weeks. My rheumatologist said if symptoms return go back to prior dose for 2 weeks & try again. So far it’s working for me. I am at 7 mg.

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@dadcue

Don't get me started with my blood pressure. My blood pressure was spiking and nobody knew because it wasn't ever too high when my blood pressure was taken. When I started having heart rhythm irregularities, an EKG was done. The EKG revealed that I had left ventricular hypertrophy (LVH) which is usually caused by high blood pressure.

My primary care doctor told me to check my blood pressure more often. It took a couple days for me to catch a blood pressure reading of 210/110. I thought my blood pressure machine malfunctioned except the people in the emergency room verified that my blood pressure was extremely high. I was monitored for 2 hours in the emergency room while my blood pressure returned to normal. This all happened in the morning after I took my prednisone dose.

I was referred to a cardiologist who started me on 3 blood pressure medications. I took those BP medications for 10 years while I was on Prednisone.

Now I'm off Prednisone. Within 2 years all my blood pressure medications were stopped one by one because my blood pressure was getting too low. Now I'm off all my blood pressure medications.

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So let me understand correctly, the prednisone was causing all of these problems for you that we’re not being identified, including elevating your blood pressure to the point of absurdity??

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I tapered from 30 mg daily all the way down to 2 or 3 daily this past February, before the inflammation returned. My rheumatologist prescribed 15 mg weekly methotrexate at that time, to help get me off the prednisone, as I tapered down again from (I think) 15 mg prednisone daily up to now. I'm expecting to taper down to 1 mg prednisone daily on Saturday if the pain stays away, then hopefully I'll go to 0 just 4 weeks after that, while keeping at the 15 mg weekly methotrexate.

I know that the pain may come back for me, but I'm encouraged that I've been at 2 mg prednisone daily for about 3 1/2 weeks now with inflammation returning, better than the last taper.

If the pain does come back for me while I'm still on prednisone, what's likely next for me? Increasing prednisone again with a slower taper? I miss being able to sleep well these past 14 months, but I do prefer that to the PMR pain. I do need an eye checkup soon however. I can tell a notable difference in my vision since shortly after starting prednisone.

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@carolinlv

So let me understand correctly, the prednisone was causing all of these problems for you that we’re not being identified, including elevating your blood pressure to the point of absurdity??

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I believe prednisone was causing dramatic increases in my blood pressure. There wasn't any other reason for my blood pressure to be that high. I needed blood pressure medications the entire time I was taking prednisone. I was only 52 years old when I was diagnosed with PMR. I had no history of cardiovascular disease and no reason to expect that I would have high blood pressure. I was able to discontinue prednisone at the age of 65.

A year after getting off prednisone I started to complain of dizziness. My blood pressures was getting too low. My blood pressure medications were stopped one by one. I'm almost 70 and now I am off all my heart medications.

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@dadcue

I believe prednisone was causing dramatic increases in my blood pressure. There wasn't any other reason for my blood pressure to be that high. I needed blood pressure medications the entire time I was taking prednisone. I was only 52 years old when I was diagnosed with PMR. I had no history of cardiovascular disease and no reason to expect that I would have high blood pressure. I was able to discontinue prednisone at the age of 65.

A year after getting off prednisone I started to complain of dizziness. My blood pressures was getting too low. My blood pressure medications were stopped one by one. I'm almost 70 and now I am off all my heart medications.

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That is awesome and I am very happy for you that you’re able to do that! I don’t take prednisone on a regular basis, but 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 currently take blood pressure medication as well as a statin. I will definitely look out for this. Thank you for this information!

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@carolinlv

That is awesome and I am very happy for you that you’re able to do that! I don’t take prednisone on a regular basis, but 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 currently take blood pressure medication as well as a statin. I will definitely look out for this. Thank you for this information!

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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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@carolinlv

That is awesome and I am very happy for you that you’re able to do that! I don’t take prednisone on a regular basis, but 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 currently take blood pressure medication as well as a statin. I will definitely look out for this. Thank you for this information!

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"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."
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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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