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The story of my RA

Hi everyone. I am new to this site, but not too new to RA. I was diagnosed with RA after the birth of my second child. I was 28. I am now 61. Needless to say, I have been on every RA treatment known to man. I was on the Enbrel drug study for probably 20 years and had fantastic results. Then one day Enbrel just quit working. My doctor and I are still in the process of trying to find a “concoction” that works. I am on infusions right now. About 6 weeks after my son was born I started noticing stiffness. I was breast feeding my son and my shoulders started aching to the point where I couldn’t remove my arm from whatever top I was wearing. Then my hands, fingers and wrists started aching. I would pick my son up from his crib and literally drop him right back into the crib. I couldn’t even pick up his weight of 8 lbs. Then it went to my feet and ankles. I was supporting myself on furniture to walk. I went to my family doctor and was diagnosed with RA. My doctor put me on antibiotics for the rest of my life. Nothing else, just antibiotics. My aunt also had RA and scheduled me an appointment with her Rheumatologist. He put me in the hospital for a week and started me on “gold” shots, physical and occupational therapy. I was on a number of other RA medicines until my doctor got me on the Enbrel drug study. Miracles of miracles, Enbrel worked. I had forgotten what it felt like not to hurt all the time. It was amazing. Enbrel probably helped me for 15 years. I stayed on Enbrel for another 5 after it quit helping. I have switched Rheumatologists since then and he is bound and determined to find the right “concoction” that will help me. In the past 2 years, I have been on so many different RA medicines that I really lost count. I am now on an infusion. I go to the cancer center (and spend all day there) for a treatment and go back again 2 weeks after. Then I wait for 5 months and do it all again. Sometimes I feel okay but most the time I don’t. I have had numerous replacement surgeries which have helped. The most beneficial surgery I had was a total wrist transplant. My Rheumatologist recently put me on a “mind” pill (Xanax) because I lost the fight to RA. I was at the point where I had given up. This is the way I would feel the rest of my life. So, depressing!!!! So, my doctor said we needed to get my mind in the right place again. So, I added another medication to my long list of medications. But I will stay positive and know my doctor will find something that will help me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Gail author
    3 months ago

    This is an update to my story with RA. I had surgery on February 4th to have my right wrist fused. I already had two wrist replacements over a period of 30 years on my right wrist. The hand/wrist specialist informed me the only option available to me was having my wrist fused. After the surgery everything went downhill. I was told I had a nasty infection in a bone in my wrist. I had to have a PICC line installed on my left arm. I had a full cast above my elbow on my right arm. My family had to learn how to give me antibiotics daily through the PICC line. I also had to have blood drawn every week to see if the infection was clearing up. In the meantime I also came down with a bad case of shingles. The shingles is gone but still have the pain. The PICC line was removed after 6 weeks and now started oral antibiotics. I have to take two pills three times a day, total of 1800 mg daily for six months. The infection in my bone can come back with a vengeance. I’m only on day 5 of oral antibiotics and already feeling all the side effects of these antibiotics. Don’t know if I can do 6 months. My kids and grandkids keep me going.

  • jessie
    2 years ago

    Bless your heart, I have only had RA for four years and it has been an uphill battle. I honestly don’t know how you do it. I hope you find the right drug for this lousy horrible disease, God bless you

  • Gail author
    2 years ago

    Thank you Jessie. It is a lousy horrible disease. But keep fighting, there are a lot of good medicines for RA NOW. Just have to find the right ones that work for you. You will get there. God Bless you also.

  • Richard Faust moderator
    2 years ago

    Thank you for sharing your story Gail. Please know that many in this community understand what you are going through and you are always welcome here for support. Glad to hear that you are trying to stay positive and working on your emotional well being. This article from our editorial team looks at managing emotional problems: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/.

    You certainly have seen a lot and been through many treatments. Thought you might relate to this article from one of our contributors who has also had RA for quite a while on the evolution of RA treatments: https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/. Hopefully you and your doctor will find a regimen that works for you. Wishing you the best. Richard (RheumatoidArthritis.net Team)

  • Gail author
    2 years ago

    Thank you Richard. I can say one thing for sure about this site, It is nice to hear/talk to other people that really understand what people with RA go through. It’s hard to describe the pain, sometimes the feeling sorry for yourself because it’s not going away, the frustration watching other people go bowling, play volley ball, etc. and know you can’t. My boyfriend and children are very supportive but it sure is nice to talk to someone that really gets it. Thank you,

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