Long term Prednisone for RA?
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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@junieb1 thought i would chime in here since i’ve had RA for 34 years now. I’ve taken my share of prednisone over the years but never 10 mg for any extended time period. It seems like a very high dose for long term use. I agree with you, it’s one of the few drugs that gives immediate relief but i would be very careful taking that dosage for too long. I have seen moderate to severe deterioration in my L4-L5 vertebrae and i’m sure the prednisone has contributed to that. I try to only use it when i’m in a flare. i know it’s a question of quality of life. i’d rather lead a quality life than suffer and live to 90. When i was first diagnosed they were using gold injections as treatment. They’ve come a long way with new medications and i’ve found i don’t have near as many flares with the new biologics. xeljanz and rinvoq have given me the most relief and allowed me to take smaller doses of prednisone.
Best of luck on your journey, I know first hand it’s not an easy one.
@junieb1 I am very surprised that your doctor said hydroxychlroquin was a nasty medication. Did you have bad side effects from it? I did an online seminar a while back, and the doctor told us how it important this medication was... especially if you also have Lupus. It also helps shorten covid symptoms, and possibly prevents you from getting the virus. I did try the methotrexate, but unable to continue due to side effects. Good to hear the gabapentin helps you too! My hands and nails are awful...plus I have a rash on my face that comes and goes. I truly hate these autoimmune diseases! Praying for healing 🙏 Wish you the best in your journey too! God Bless ❤️
@brcc Thanks. Like you, I have had RA for a very long time, since 1982, and treatments have come a long way for sure. I also have deteriorating vertebrae but probably not from prednisone. My current rheumatologist tells me that he thinks the GLP-1's will be part of the treatment for RA soon. My sister has diabetes and is on Ozempic. Not only did it help her diabetes, it "cured" her thyroid, helped her lose a ton of weight, got rid of inflammation, she's off blood thinners, etc.. She has been going to the gym every day which she had not been able to do for years! They seem to be miracle drugs and they're being used for everything. My issue with the biologics is that I have lung issues and Actemra is the only one that is less likely to land me in the hospital with a lung infection. So, I am really anxious to see how they incorporate the GLP-1's with treatment for us. Let's all hang in there and live to fight another day, and see further improvements in treatments!
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2 Reactions@donna2008 I hate those rashes that never get explained!! I have had several of those on different areas of my body. I don't think all of the rheumatologists I have had would agree with this doc about Plaquenil but he was one of my favorite doctors. I did have some side-effects like photosensitivity and skin rashes. Every blemish, every scar, every mosquito bite I had ever scratched became dark and visible on my skin. I got headaches and couldn't go in the sun - I love the beach! I'm sure your doc has told you how important it is to have annual eye exams as it can cause eye damage. I was on it for over 20 years though and it did what it was supposed to do as a triple therapy for my RA. My doc just thought it was time I got off it. As with all drugs we take, if the benefits outweigh the risks then we have to trust what our doctors and our research tells us. Everyone is different when it comes to these autoimmune diseases and treatment is partially guesswork at best. I think we will see new and better treatments in the near future. That's my hope anyway.
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2 Reactions@junieb1 just starting to hear about the glp-1’s for inflammation. It sounds very promising and i’m excited to see what comes of it!
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1 ReactionMe too and I hope it happens fast!!
I have a different autoimmune (mixed connective tissue disease )but have had experience with long term Prednisone. I thought it was the only thing that helped with all my symptoms in any way. Until it didn't!! It caused cortisone induced myopathy which was only diagnosed after multiple scans, neurology consult, etc Now also have osteoporosis I was kept on it way too long.
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2 Reactions@loriea So sorry. What dose of prednisone were you on and for how long? Did you find anything else to help your symptoms? I am at the age where I expect to see some bone loss but so far my scans have been good. I am going to taper the prednisone though. I hope you have been able to find help.
@covidstinks2023
Yes, prednisone is a wonderful drug with a dark side. I've been on prednisone since 2009. I had severe encephalitis and I was initially on 1000mg Solumedrol for 3 days. Then on 60 mg/ day of prednisone. Now I'm down to a maintenance dose of 5mg/day. Side effects include thinning skin with lots of bruising, osteoporosis. I had a torn Achilles and needed 2 surgeries because the tissues are so thin and they tore a 2nd time. Prednisone makes every surgery risky due to extra bleeding and weak tissues.
@ericamonique I'm very sorry. How awful when our treatments are sometimes nearly as bad as our diseases. I can't even imagine what it would be like to be on 60mg of prednisone! Will your skin return to normal or is that permanent? I know the "moon-face", weight gain, and headaches, are temporary for me. I didn't know that about the risk for surgeries. I'm glad you at least managed to get to a maintenance dose.
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