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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loriea | @loriea | Sep 23 3:10pm

In reply to @junieb1 "@loriea So sorry. What dose of prednisone were you on and for how long? Did you..." + (show)

@junieb1
For the most of the last 2 years I was on 5mg. I was put on a stronger dose and then a taper a couple of times, the last time taking the higher dose I got worse.
I was absolutely miserable, feeling similar to when I first got sick

junieb1 | @junieb1 | Sep 23 3:58pm

In reply to @loriea "@junieb1 For the most of the last 2 years I was on 5mg. I was put..." + (show)

@loriea That has happened to me too. Sometimes I have felt like my doctors are missing something. Like maybe there is another autoimmune disease in the mix or some underlying condition that is not being treated. My only diagnosis is RA which has its own complications because it feels like it sometimes goes into remission but then the biologics require constant treatment so you can't just treat it when it flares. So far though, nothing has kept it totally in check. That's why I am so excited about the prospect of GLP-1's being used in the treatment.

jube70 | @jube70 | Sep 24 5:26pm

For all or anyone on long term prednisone PLEASE,PLEASE check your bone density before starting then every 2 years or follow your doctor’s recommendations. Long term prednisone use can cause Osteoporosis.

lynda12345 | @lynda12345 | Sep 25 9:19am

Yes I agree bone density
Although unfortunately I mentioned this to my GP and his reply was less than positive
So patients be informed and don’t be discouraged

purehope2022 | @purehope2022 | Sep 27 8:51am

You will need to do regular bone density scans, or iv treatments for your bones. It is the silent side effect that once you notice it, its too late. Be your own advocate on this one. Don't wait for your dr. to suggest it.

junieb1 | @junieb1 | Sep 27 12:15pm

In reply to @purehope2022 "You will need to do regular bone density scans, or iv treatments for your bones. It..." + (show)

@purehope2022 Thank you. My doctor has made sure I get regular bone density tests for the past 20 years or longer. They always remind me. I had breast cancer in 2001 and was on Tamoxifen, which actually increased my bone density. Isn't that weird?!

missy245 Per | @missy245 | Sep 27 2:31pm

I have seropositive RA for 25 years. I started on Plaquenil which worked really well for quite a few years although toward the end of the 12 years I took it began to not work so well. I had to quit it because I developed retinal toxicity.
Back when I started it, there were no guidlines to match the dose to the person's weight. I am a small , thing person and I was on too high of a dose based on today dosage guidlines
The effects on the eye is cumulative and so that is why Doctors want to get you off of it once you've been on it for many years.
I think that is why I developed the retinal toxicity.

I then went on Methotrexate, but developed an allergy to it after 3 doses.

So then I was offered Enbrel or Humira. I was really scared about biologics and so I quit going to doctors for 5 year ,but the last couple of years were really difficult and so I finally went back to a Rheumatologist. My lab was bad and he wanted to start me on simponi aria. I am on medicare, so the only way they will cover a biologic is to get an infusion.
I had a bad reactions to the simponi. Developed a lot of heart issues and now I have a Pacemaker.
So no more biologics for me.

I now take sulfasalazine and 5 mg of prednisone. I initially started it at 10 mg, but about 2 years ago, I tried to wean off of it and got down to the 5 mgs I'm on now.
I know it isn't ideal, but I just turned 81 this week and I really don't have any other options. So, it is what it is. For those who have a long life still ahead of you, it probably is a good idea to try and get off of it. I have ostoporosis, but that started well before I ever took prednisone . Bone scans have not shown a dramatic decrease in density since starting on prednisone There has been a little loss, but actually less than they expected.
I can't take drugs like fossamax because of cell changes in my stomach and I also can't take something like Prolia because it is a biologic.

I am a strong believer in people with RA taking fish oil . There are good studies show it helps with the pain of RA. I started taking it 6 months after my diagnosis.

deniseheart | @deniseheart | Sep 29 9:19am

Been taking low dose pred for over 10 years with no negative effects. I alternate 5mg and 10 mg day to day. I take this to prevent severe hives that I get from diuretics. I also get regular bone scans to help keep an eye on things.

junieb1 | @junieb1 | Sep 30 10:33am

I didn't know you could switch between doses like that. I always have to taper. I am currently trying to taper from 10 to 5 so my doc has me reducing by 1mg every 2 weeks. Do you feel side effects when you go form 10 to 5?

wendybfrompgbc | @wendybfrompgbc | Sep 30 11:42am

I have been on Prednisone since November 2020 and ended up quitting it cold turkey about 3 months ago .I tapered down to 3mgs and then quit altogether .The side effects were way to much.Due to use of prednisone I now have osteoarthritis of my spine and neck and my teeth have crumbled and because I was also prescribed methotrexate a long with Prednisone which caused my hair to start falling out.Prednisone is both the best and worst drug at the same time.I am in agony but refuse to go back to prednisone . My wish for you is to have success in your treatment and I don't recommend any one doing what I have done

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