rheumatoid arthritis side effects

You Said It: The Most Unexpected Side Effects of RA

We asked our readers and followers this question: “What was the most unexpected side effect of your rheumatoid arthritis or RA treatment?” Here are their answers.

I was shocked to be diagnosed at 47. I have an immensely high pain tolerance, but the shocker to me is how high the pain level is during a flare. I also have been surprised at how long it takes to find the right treatment combo.

— Karyn Corson, Saratoga Springs, New York

For me, I was surprised to get scleritis, the inflammation of the white part of the eye, which they treat with prednisone drops. Then I developed cataracts from the drops.

— Tracy Olin, Jacksonville, Florida

I was surprised at how debilitating the fatigue is.

— Korina Barber, via Facebook

I have been surprised at everything I have lost – energy, weight, hair, but mostly time.

— Juan Ramirez-Gonzalez, Spokane, Washington

Being diagnosed at 39 was like a slap in the face, even though it explained many of my symptoms that had been going on for years. Trying to find happiness while you’re always so tired and hurting is definitely a challenge.

— Kim Roberson, via Facebook

I’m shocked at how RA affects absolutely every part of my life.

— Donna Harris, Aberdeen, Texas

I was surprised at how well leflunomide works for me. Then, I was even more surprised when I had to decrease my dosage due to my liver panel.

— Jennifer Raess, Las Cruces, New Mexico

I was shocked that some women with RA, like me, go into remission when they are pregnant. Why isn’t there a pill to simulate that?

— Kaila Shaffer Kolen, Spotsylvania, Virginia

I was surprised at feeling relieved to see actual damage to my wrists and hands on an MRI. Prior to seeing the pictures and reading the extent of the damage, I thought I was losing my mind. What was unexpected was the relief I felt at seeing the virtually shredded tendons and ligaments.

— Elizabeth Bairami, Milwaukee, Wisconsin

Visit the Arthritis Foundation online support community or find in-person support at Arthritis Introspective.

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3 thoughts on “You Said It: The Most Unexpected Side Effects of RA

  1. I too have a high torrent of pain but when I had my first real flare up I though something really is wrong with my joint, the was so overwhelming I wanted to cry. I never knew it could hurt so bad. Now my joint are swelling and protruding out of my skin!! I try to exercise every morning to get me going alone with a inspiration reading.

  2. I have had RA for 10+ years. I am saddened by the responses. I wish I had some great miracle but I dont. Though, I know feel validated of what the last 10 years have been for me. I find peace with support and a positive attitude and not to many “poor me” days. The last note is find a rheumatologist that listens. Yea my first blog post!!!!

  3. The texture of my hair changed a great deal after going on RA meds…first the Plaquenil and it continued with the Leflunomide. My normally thick head of hair became totally kinky around my face and up under the hair if pulled up. Very strange and even more disconcerting. This was in addition to having a serious reaction to Methotrexate after having been on it for 2-1/2 years.

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