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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junieb1 | @junieb1 | Sep 30 12:28pm

In reply to @wendybfrompgbc "I have been on Prednisone since November 2020 and ended up quitting it cold turkey about..." + (show)

@wendybfrompgbc I'm so sorry. It sounds like you have not found the treatment you need. I would suggest doing some research and finding the very best rheumatologist you can find. When I moved back to Philly in 2013 I fired 3 before I found one that liked and one who I thought didn't want to use cookie cutter methods in my treatment. I don't know what your diagnosis is but there are many things that can cause osteoporosis, including being genetically predisposed to it.

I definitely can relate to the hair loss from methotrexate and I was so pleased when my doc told me last week that I could stop taking it with the actemra because the actema does not need it. The larger the dose of methotrexate the more hair loss! It does grow back, assuming you can find treatment without it. It's a chemo drug and was not intended for the autoimmune diseases it came to be used for.

I don't think you need to be in constant pain and I am sure there are answers out there for you. Don't give up. Keep looking until you find the right doctor. Be an advocate for yourself.

junieb1 | @junieb1 | Sep 30 12:30pm

In reply to @missy245 "I have seropositive RA for 25 years. I started on Plaquenil which worked really well for..." + (show)

@missy245

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.

Jump to this post

@missy245 Interested to hear what more you can tell me about fish oil!! No one has prescribed it for me but I saw it recommended somewhere so I bought a huge bottle of it. Then I realized I didn't really know what to do with it. lol

How much do you take?

carculmer | @carculmer | Sep 30 2:39pm

In reply to @missy245 "I have seropositive RA for 25 years. I started on Plaquenil which worked really well for..." + (show)

@missy245

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

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.

Jump to this post

@missy245 i am on a blood thinner - think i cant use fish oil for my RA. Anybody know. Will need to research.

missy245 Per | @missy245 | Sep 30 4:29pm

@junieb1
Double-blind trials used daily quantities like 2.7 g EPA and 1.8 g DHA
https://pubmed.ncbi.nlm.nih.gov/3030173/
On the front of a fish oil bottle it will give a Mg amount. Don't go by that.
On the back, it will give the EPA and DHA mg amounts . Usually those amounts are for 2 capsules. But check for sure . That is the actual dose of a capsule or often 2 capsules.
I take 2500 mg EPA and 1000 DHA each day. (4 caps)
You will not notice an instant improvement like taking prednisone or advil. It takes about 3 months.
I prescribe to Consumer Lab which tests supplements for purity. I can look a product up if you'd like.
I started taking it 6 months after I was diagnosed. At that time, I was struggling to keep my cholesterol down and it helped my cholesterol numbers too.

I've explains the medication limitations I now have. So, after the Simponi reaction and not wanting to prescribe any other because of the heart issues that developed, my Rheumatologist suggested I add fish oil, not having noticed that I had already listed it as taking it.

As for the bleeding issue. This study suggests that it doesn't need to be temporarily stopped for a surgery. I still do stop it before a procedure, just to be sure, like when I got my Pacemaker
https://pubmed.ncbi.nlm.nih.gov/28552094/

missy245 Per | @missy245 | Sep 30 4:36pm

In reply to @carculmer "@missy245 i am on a blood thinner - think i cant use fish oil for my..." + (show)

@carculmer You probably need to take that up with the physician who prescribed it.
Fish oil contains omega-3 fatty acids (EPA and DHA), which can mildly affect platelets and prevent blood from sticking together

junieb1 | @junieb1 | Sep 30 5:40pm

In reply to @missy245 "@junieb1 Double-blind trials used daily quantities like 2.7 g EPA and 1.8 g DHA https://pubmed.ncbi.nlm.nih.gov/3030173/ On..." + (show)

@missy245 Thanks so much for your insight. I recently started taking Eliquis because I went into afib during lung surgery, so I will check with my doctors to make sure it's okay. I prefer to take a more natural approach when I can. I can't take stains so it would be great if it lowered my borderline cholesterol numbers. it might have been my cardiologist who first mentioned fish oil. The past couple of years have been a whirlwind and it's been hard to stay on top of it all. Thanks again!

missy245 Per | @missy245 | Sep 30 9:54pm

In reply to @junieb1 "@missy245 Thanks so much for your insight. I recently started taking Eliquis because I went into..." + (show)

@junieb1 Yes, I'd make sure to clear it with your cardiologist. As I remember eliquis is an anticoagulant and Fish oil is more like aspirin or the drug Plavix . They keep the platelets from sticking together.
I don't have Afib, but I do have atrial tachycardia and that can turn into AFib. sometimes. I've always assumed that if I developed afib, I'd probably need to give up the fish oil

junieb1 | @junieb1 | Sep 30 10:50pm

In reply to @missy245 "@junieb1 Yes, I'd make sure to clear it with your cardiologist. As I remember eliquis is..." + (show)

@missy245 Interesting. Thank you.

beverlyjenen | @beverlyjenen | Oct 1 7:48am

In reply to @wendybfrompgbc "I have been on Prednisone since November 2020 and ended up quitting it cold turkey about..." + (show)

@wendybfrompgbc
I tried to quit prednisone 5 months but because I stopped cold I threw my cortisol off and had a terrible flare up of my RA. I am now down to 2.5 daily and RA doctor said to wait till next visit end November and we will wean off hopefully forever. I also was losing my hair and had other side effects so I can’t wait to get off prednisone, I recently switched RA drugs methotraxate to hydroxychloroquine. So far this new drug is working great and I have even seen small improvement

junieb1 | @junieb1 | Oct 1 9:59am

In reply to @beverlyjenen "@wendybfrompgbc I tried to quit prednisone 5 months but because I stopped cold I threw my..." + (show)

@beverlyjenen Be sure and have regular visits with eye doc. Plaquenil can cause ocular toxicity. I was on it for over 20 years and had no problems but long term use can become dangerous. Methotrexate causes the hair loss. I was also on it for over 20 years. They called it triple therapy - methotrexate, plaquenil, and asulfadine. It can give relief but to truly stop the progression of RA I think the biologics are needed, if they can be tolerated. Good luck.

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