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Long term Prednisone for RA?

Autoimmune Diseases | Last Active: 8 hours ago | Replies (57)

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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.

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Replies to "I have seropositive RA for 25 years. I started on Plaquenil which worked really well for..."

@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?

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