Long term Prednisone for RA?

Posted by junieb1 @junieb1, Sep 21 12:31pm

For the past 8 months I have been dealing with severe joint pain, with nerve pain and burning, especially in my hands, knees, and feet. I believe it was a reaction to Leqvio but also thought it might be an RA flare, although the symptoms were not normal.

I stopped taking all RA meds along with the Leqvio to see if I could discern what was happening. The joint pain continued but lessened, would go away, and then return again, weakened. So, nothing conclusive about the cause.

Finally, I asked for a prednisone pack and it helped. When I stopped the prednisone the symptoms returned so my rheumatologist suggested 10mg of prednisone daily. It has been a lifesaver. I feel better than I have in months! I have energy and no joint pain. I got the use of my hands back and can do light housework, etc..

My doc does not think prednisone is good for long term use but I feel so good that I want to keep taking it. Obviously, I won't if it is bad for me. I have found some things to do to mitigate the side effects of "moon-face" and mouth irritation, but otherwise I have no obvious problems.

I am wondering if anyone else has had experience with long term use of prednisone.

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covidstinks2023 | @covidstinks2023 | Sep 21 4:02pm

@junieb1, Prednisone is a miracle medication. It helps with inflammation and gives you energy.

The downside is the side effects over time. I have a dear friend who was on it for RA daily and she felt great on it, but, her bones & joints are in such bad shape now.

Be careful with long term use.

Blessings & Prayers for you....

junieb1 | @junieb1 | Sep 21 5:10pm

In reply to @covidstinks2023 "@junieb1, Prednisone is a miracle medication. It helps with inflammation and gives you energy. The downside..." + (show)

@covidstinks2023 , Thank you. I hear you. My rheumatologist has already told me that he doesn't want me to stay on it, even though I do take supplements for bone health. It has other bad side effects that can cause diabetes if you are predisposed and affect your heart. I am going to taper to a lower dose and see how I feel. I don't know if there is a point at which a lower dose is safe enough for long term use and that's why I am looking for input from people who have been down this road. I am very sorry about your friends. It truly is a miracle drug. I have more energy than I have had in years and that's why it so tempting to ignore the warnings - but I won't. Thank you.

gently | @gently | Sep 22 1:14am

junie, severe joint pain is a known side effect of Leqvio. It is even said to mimic an RA flare. It is good you stopped taking it, But you need to resume the RA medications to avoid permanent damage to your joints.
Prednisone will compound the destruction of the bones in your joints already at risk with RA.
I'm glad you've had a break with more energy and feeling good. And I'm glad that you are tapering and not yielding to temptation.

covidstinks2023 | @covidstinks2023 | Sep 22 6:30am

In reply to @junieb1 "@covidstinks2023 , Thank you. I hear you. My rheumatologist has already told me that he doesn't..." + (show)

@junieb1 Bless you. I feel the same way when I am on a Prednisone Taper. I feel wonderful! BUT, I know the side effects. Enjoy these good days while you are on it. Blessings & Prayers....

donna2008 | @donna2008 | Sep 22 7:47am

(@junieb1) I am presently taking a very low dose of Prednisone (2.5 mg) with hydroxychloroquine(200mg)
(recently added the Prednisone after having to stop Leflunomide. ) I see my rheumatologist next week,so will ask her about increasing to 5mg Prednisone. Another medication that helps me when nerve pain is severe is Gabapentin. I only take it when needed and it works for me. Take care, God Bless 😘

turtledale | @turtledale | Sep 22 7:56am

Junieb1, I have been on pred 5mg for 3 years sometimes it works but sometimes I have joint pain in my hands. I was diagnosed with RA about 15 years ago I don't like taking a lot of meds, so I tried to keep it minimal. I was on Enbrel and it worked wonders for me for years I wasn't even taking pred. In 2024 I had some health issues and had to go off of the Enbrel and now I have joint pain every morning for a couple hrs. The Pred does help but not good to take for long term. I am being seen at Johns Hopkins in Baltimore MD by a rheumatologist and he told me that we might have to find a different med to use to address the pain in the morning. If i could go back to ENBREL I sure would it was a wonder drug for me.
Best of luck

junieb1 | @junieb1 | Sep 22 10:25am

In reply to @gently "junie, severe joint pain is a known side effect of Leqvio. It is even said to..." + (show)

@gently It's hard to give up feeling so good. It must be similar to addiction, just psychological and not physical. My concern is that the Actemra doesn't seem to work for my RA without the Arava and my rheumatologist is hesitant to to give me Arava because they think it caused the necrotic tumor on my lung. I sometimes feel like I am walking through a minefield trying to navigate this path. I know that everyone on this site is dealing with similar problems. Good luck to us all!

junieb1 | @junieb1 | Sep 22 12:03pm

In reply to @turtledale "Junieb1, I have been on pred 5mg for 3 years sometimes it works but sometimes I..." + (show)

@turtledale Thanks for your input. So far I have only been on the prednisone for a couple of weeks so I am thinking of trying a lower dose if my doc approves - maybe 7.5mg or 5mg like you. If it works maybe I can stay on it longer. I really hate that about these dieases - that something can work so well and it either stops working or a different health issue makes us have to stop it! There doesn't seem to be any long term stability. My first biologic was Humira in early 2000's but I ended up in the hospital with a lung infection. For people who have lung issues the biologics are very iffy. Actemra with Arava worked for me until something caused another lung infection. Good luck to you too! My rheumatologist told me that within the next year or so he expects to see GLP-1's used in combination with something else to treat RA. Probably other autoimmune diseases as well. I am so eager for that to happen!!

junieb1 | @junieb1 | Sep 22 12:14pm

In reply to @donna2008 "(@junieb1) I am presently taking a very low dose of Prednisone (2.5 mg) with hydroxychloroquine(200mg) (recently..." + (show)

@donna2008 I took Plaquenil and Leflunomide for probably 25 years, before eventually moving to the biologics. I took them with methotrexate, I think they called it triple therapy back then. It worked pretty well but my doctor told me that Plaquenil was a "nasty" drug and wanted to get me off it. Since then my treatment has been a rollercoaster! I think these diseases are very hard for doctors to treat because everyone is so different. What works for me might not work for you, etc.. I take Gabapentin at night (my doc has me take it at night so that it doesn't scramble my brain so much. lol) and it helps the nerve pain for sure. My hands are the worst at the moment. Be well and best of luck.

junieb1 | @junieb1 | Sep 22 12:22pm

In reply to @covidstinks2023 "@junieb1 Bless you. I feel the same way when I am on a Prednisone Taper. I..." + (show)

@covidstinks2023 Thank you. Nice to know we are not alone.

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