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

  1. Your childhood. My daughter was diagnosed at 11 and for 5 years now has not been able to enjoy life the way other kids do. She is sick ALL the time.

  2. I was Diagnose with RA at the age of 23, A long and painull Journey, now I am 46. I was shocked abort a Lot of week and heartless doctors who dont really care. And i am fustraten, that toll know nothing really helfen.

  3. I was dx with RA last yr and it has been hard on me from being in pain everyday to being on soooo many meds to having vision problems to depression to palpitations.

  4. I was first diagnosed with RA, in my knees in my middle 30’s!
    Now I suffer from the arthritis in my back and even in my ankles and feet!
    My primary doctor told me I was eaten up with arthritis and I would most likely be in a wheel chair within a couple of years! I was not offered anything that would even make the pain tolerable. Maybe there is nothing. If by chance there might be, I would certainly appreciate hearing about it!

  5. I’ve just been diagnosed but have exhibited symptoms for years. I have chronic kidney disease as well as disfiguring hands and fingers.

  6. I was surprised at how many meds I’ve had to go through to find a biological and DMARD that both work for me and I’m not allergic too.

  7. I was in such a good mood yesterday. Pain level was at a minimal. Today, the pain is unbearable!! Can you say roller coast ride?!

  8. Elizabeth Bairami, I’m confused about your comments. You were relieved that you had damage to your wrists? Please help me understand what you mean here.

  9. Fighting for 19 years (diagnosed for only 11), and with only one short remission in all that time, I have been shocked that this RD and accompanying Fibro have affected so MuCh of my body: bones, tendons, ligaments, synovial fluid of feet, ankles, knees, elbows, neck, back, wrists, hands, heart, lungs,esophagus, intestines, voice, eyes, sleep issues, fatigue, brain fog…and the resulting four surgeries, so far.

  10. I was, and still am, surprised at how painful RA was without medication. At times, I literally cried like a baby, curled up in the fetal position in my bed, begging God to either cure me or end my life. Before the meds, my pain was easily an 8 on a 10 scale. I continue to be baffled at the burning sensation in my right thigh and the stabbing feeling in my right kneecap, which both still hurt like Hades after bringing the rest of my body into line. It is nearly intractable at times. Thank God I’m retired. I can’t imagine having to work with both the pain and the opioid side effects.

  11. I was diagnosed 7 years ago, and I have so many problems with my short term memory. I really feel the infusions have affected it.
    has anyone had this issue?

  12. I was diagnose with RA in 2007, I was in my middle fifth ties. I was extremely surprise how my doctor fail to order the right test early.
    Even after I kept explaining my symptoms. By the time he finally noted that I had RA, was when I show the typical symptoms of RA. Prior to
    that I complain of Severe Fatigue, which I did not have before. Last but not least, I was also surprise that I was given massive amounts of prednisone by the Rheumatologist, since it took the over a Month for me to be seeing. No pain medication would help the severe pain in both of my wrist. The first Rheumatologist also fail to order necessary blood test; by some miracle she left, and I saw another Rheumatologist who order a battery of blood test, x-ray and, I was told that I was extremely deficiency in Vitamin D. I took 50 mcg of Vitamin once a week, for approximately six months. I was also given Metroxate the lowest dose 2.5mg for a little over a year. I stop the Metroxate and the Vitamin D. and I went into remission. I have being in remission for Seven years now. And all because I was extremely low in Vitamin D. Now I take 5mg of Vitamin D every other day. Am no longer have severe fatigue, I do notice that I am somewhat forgetful however I am getting better each day.

  13. I was in my early 50’s when diagnosed with RA. Immediately I disliked my doctor, she had told me everything I did not want to hear.
    And worse yet she knew and understood all I was feeling! The pain, depression, fatigue, inability to do all I wanted to do. The first person talked to thinking I would get sympathy instead told me “there is no cure for RA!” But my turning point came when my doctor said “I can treat you if you let me”. I let go of my pride and said yes! It took about 6 months for the right meds to work their magic!! Prednisone, and tetramyocen, and then Methotrexate.
    Slowly over a period of time I was out of pain. It took me a bit longer to deal with the depression. Today at 78 I am doing fine.
    Occasionally I have a little flare up but know the best remedy is rest and Ibophren. I am so thankful for my caring doctors. It is a hard job they do dealing with RA and Arthritis.
    Forgive my misspelling of some words.

  14. After having many symptoms that were missed for years I was finally diagnosed in March. By September I was on disability after being fired from my job because I could no longer do it.
    RA totally changed my life.

  15. After reading these comments on side effects of RA.I will no longer complain of my side effects. I was diag. with RA in 2003,am now 83.Progressed from methotrexate,lefludimide,to now Plaquinal.Am still able to operate my knitting machines.Take a lot of pain management pills!!!!

  16. I had infusions for around 7 months and it did seem to help until, because of my lowered immune system, I developed Q fever, pneumonia, and it activated my latent TB. I was hospitalized for ten days and with major antibiotics, and after I went home, had to take six months worth of TB antibiotics. I retired early and am now treating RA with diet and herbs. I have good days and bad. Depends on the weather. I try to keep a positive attitude, what else can one do?

  17. people should share their course of treatment. meds journey that helped get where they are today….. test that conclude right meds for each patient…. what better way to solve this RA problem? Here all the facts from patients and just the sweet coating……

  18. I did not expect RA itself when I was diagnosed at the age of 74.
    But, good aggressive treatment by my Rheumatologist brought it into remission 6 months ago. Started to wean some of the DMRDS 4 months ago with no negative effect. Doing great and hope that the Rest of RA patients’ RD goes into remission.

  19. 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.

  20. 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!!!!

  21. 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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