1. < Autoimmune Diseases
Profile picture for junieb1

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for istraz34
istraz34 | @istraz34 | Oct 5 7:33am
In reply to @brightwood "I’ve been on prednisone for 18 months for GCA, and have been tapering for the majority..." + (show)
Profile picture for brightwood @brightwood

I’ve been on prednisone for 18 months for GCA, and have been tapering for the majority of that time, from my initial dosage of 60mg. Most of the way it’s been a mg less every 2-3weeks as long as I don’t develop symptoms of the temporal issue. We paused a bit at about 10 mg, as I was worried about a headache, then resumed the schedule and ceased the frequent blood work (CRP and sed rate) as it was trending very positively. I went to .5mg intervals below 5mg and am now at 1 mg, optimistic but now in “withdrawal”. So we’ve changed to a schedule of a month at 1, then a month at .5, then a month alternating days at .5 mg, while my adrenals and pancreas wake up. Meanwhile my wasted muscles ache a lot, I’m weak, and I’m needing naps to restore energy later in the days. I’m 80 and am just deeply grateful to the universe that I’ve not relapsed. But I’m not taking anything for granted. I never want to go on prednisone again. Now my face looks normal again, the belly has shrunk down considerably, I’m no longer diabetic, I’m slowly getting a few pounds off, my osteopenia is “normal” at my age, my eyes have apparently not been effected and my kidneys are no longer in trouble. For me, slowly but surely, and see light at the end of withdrawal symptoms — which I hadn’t expected! Sandy

Jump to this post

@brightwood I am ever so HAPPY for you!! This gives me hope that there is a light at the end of the tunnel!! I may talk with my dr to follow your regiment at 1mg to .5 mg a month and then .5 every other day for a month. THANKS

REPLY
Profile picture for rlchn
rlchn | @rlchn | Oct 5 11:21am
In reply to @junieb1 "@rlchn Thanks. Yes, I was diagnosed with RA in 1982 so I have been living with..." + (show)
Profile picture for junieb1 @junieb1

@rlchn Thanks. Yes, I was diagnosed with RA in 1982 so I have been living with it for a long time. Last year I had a severe reaction to LEQVIO which mimicked RA joint pain. The only thing that helped was prednisone and gabapentin. Currently I am tapering from 10mg of prednisone. I decrease by 1mg every 2 weeks - a very slow taper. I am going back on actemra and it takes 4 to 5 months for it to be effective so the prednisone is to fill the gap so to speak. I have lived all over the country and none of my rheumatologists have ever mentioned diet to me. You are very lucky to know what causes your RA flares. I have kept journals, tried avoiding certain foods, exercised, etc., and have never been able to truly identify the causes of my flares. At one point I was convinced that barometric pressure had something to do with it! And maybe it does for all I know. One would think that after all these years I might have a clue but I don't.

The weight gain is because prednisone increases my appetite, plus, sometimes I get a bitter taste in my mouth, along with burning, and I feel like I need something in my mouth to make it go away, so I turn to salt or various other flavors or textures.

You're right. The side effects from a low dose are much less severe than higher doses. Throughout my RA journey I have been on as much as 50mg a day so the 10mg is not the worst I have experienced. Fortunately, the headaches come on quickly and leave just as fast. As for the swelling, I have read that if you elevate your head while sleeping it keeps fluid from going to your face. Not at all sure that is true but I have tried to elevate my head at least a little bit. I think the swelling is more noticeable to me than anyone else, but it does make me self conscious.

I wish I had your will power to give up all those things.

Jump to this post

@junieb1 My heart goes out to you and your long battle with RA. I have had 4 different Rheumatologists and when I asked them about diet they basically said you can eat anything you want if you take this drug! The 4 drugs they gave me either did nothing or made me sick, so my diet/stress/Prednisone journey began. It seemed that every food I really enjoyed was on the no-go list and yes, it is a VERY difficult diet to adhere to.
Have you ever tried a functional medicine doctor? They are expensive but I have read that they have had some success with difficult RA cases.

REPLY
1 reply
Profile picture for junieb1
junieb1 | @junieb1 | Oct 5 3:55pm
In reply to @rlchn "@junieb1 My heart goes out to you and your long battle with RA. I have had..." + (show)
Profile picture for rlchn @rlchn

@junieb1 My heart goes out to you and your long battle with RA. I have had 4 different Rheumatologists and when I asked them about diet they basically said you can eat anything you want if you take this drug! The 4 drugs they gave me either did nothing or made me sick, so my diet/stress/Prednisone journey began. It seemed that every food I really enjoyed was on the no-go list and yes, it is a VERY difficult diet to adhere to.
Have you ever tried a functional medicine doctor? They are expensive but I have read that they have had some success with difficult RA cases.

Jump to this post

@rlchn It seems to me that most of our doctors are too eager to throw drugs at us. Everyone has a different level of tolerance and what works for one may not work for another. It is also hard to find doctors who will look at the patient's body as a whole, and not just their specific areas of expertise. I personally have not gone the route of alternative medicine, assuming that is what you are referring to, but my oldest, dearest friend is a psychotherapist and rarely visits a traditional doctor. I have been hesitant mostly because of the learning curve. But maybe there is no time like the present to start. Our bodies are made up of systems and it just stands to reason that sometimes the systems get out of whack and need to be tuned and looked after. It's actually quite fascinating if it weren't also so frustrating.

REPLY
Profile picture for jnieman
jnieman | @jnieman | Oct 5 6:17pm

I have had RA for 30 years and been on prednisone since the beginning. I used to be very healthy and on 3 mg daily, then I wanted to have more children and stopped methotrexate and other dangerous drugs and had to increase prednisone to function. I wish my dr would have warned me the longer you are on a dose the harder it is to taper off. I was on 10 mg daily for a couple years and have been down to 7 mg daily for many years but I still have major bone issues. Many fractures, most recently vertebrae and have lost 5 inches of height! I have had one back surgery and soon to be another. Prednisone can make you feel so good but it's also the devil with how bad it is for you at a high dose long term.

REPLY
1 reply
Profile picture for brightwood
brightwood | @brightwood | Oct 5 9:05pm
In reply to @hotrodder "@brightwood Hello, you mentioned weak muscles? Legs? And did strength to legs ever come back after..." + (show)
Profile picture for hotrodder @hotrodder

@brightwood Hello, you mentioned weak muscles? Legs? And did strength to legs ever come back after your off of the prednisone?

Jump to this post

@hotrodder I’m not actually off it yet— Maybe by Christmas, so I can’t answer. I’m having achey shoulders, hips, and especially notice it when I wake in the morning, and feel very tired in the afternoons. My PCP says not to push exercise right now, as that could stress me physically and emotionally and stress is probably what brought on the GCA in the first place. So. I’m trying to listen to my badly, rest more, and be patient. S

REPLY
Profile picture for istraz34
istraz34 | @istraz34 | Oct 6 7:07am

I am fortunate that my doctor has prescribed Physical Therapy to assist with my aches and pains. PT has given me exercises to work on at home as well. I do believe that this has helped with balance, muscle strengthening, less aches and pains. Good luck to all.

REPLY
Profile picture for rlchn
rlchn | @rlchn | 5 days ago

I lost muscle strength while my RA was running rampant for 6 months as no Rheumatologists would prescribe Prednisone and I don't tolerate DMARDs. When on Prednisone my RA goes away and I am able to get exercise and gain muscle strength!

REPLY
Profile picture for Becky, Volunteer Mentor
Mentor
Becky, Volunteer Mentor | @becsbuddy | 5 days ago
In reply to @jnieman "I have had RA for 30 years and been on prednisone since the beginning. I used..." + (show)
Profile picture for jnieman @jnieman

I have had RA for 30 years and been on prednisone since the beginning. I used to be very healthy and on 3 mg daily, then I wanted to have more children and stopped methotrexate and other dangerous drugs and had to increase prednisone to function. I wish my dr would have warned me the longer you are on a dose the harder it is to taper off. I was on 10 mg daily for a couple years and have been down to 7 mg daily for many years but I still have major bone issues. Many fractures, most recently vertebrae and have lost 5 inches of height! I have had one back surgery and soon to be another. Prednisone can make you feel so good but it's also the devil with how bad it is for you at a high dose long term.

Jump to this post

@jnieman Prednisone can be a great drug and it can be a curse. I was on it for several years to help combat my autoimmune disease and that short time was enough to cause me trouble. I got osteoporosis and cataracts. I’m on a yearly infusion for the osteoporosis and had surgery for the cataracts. I would advise everyone to ask their doctor about getting a DEXA scan. It’s a very specialized scan to monitor the health of your bones, especially those which are more likely to get osteoporosis and a fracture. I keep up with daily walks, take calcium and see an endocrinologist for medication to keep my bones healthy!

REPLY
Profile picture for cliocarmel
cliocarmel | @cliocarmel | 1 hour ago

Hi-- I was diagnosed with RA 44 years ago and have been taking prednisone (5-8 mg/day) since then. Well, recently I got a new diagnosis: steroid-induced Adrenal insufficiency (AI). It's not painful, but it's worse than RA. The lack of cortisol affects several systems--forget about a normal life.
For my RA, I have been on Orencia, methotrexate (10 mg/week) and prednisone (5-8 mg/day). No four-legged animal meat, no dairy (except kefir and a little bit of cheese), and no shade plants. And exercise, exercise. I used to swim, but at 73 and with AI I'm now just walking when I have the energy.

REPLY
Please sign in or register to post a reply.