Rheumatoid Arthritis

Biologics

Today is day three of the 2nd annual RA Blog Week! Here is today’s prompt:

Biologics can be scary – What did you think the first time you Googled your biologic medication? What advice would you give a person just diagnosed when it comes to biologic medications? Give your readers the scoop on biologics.

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A year ago, I wrote the following post and looking back, I can say that without a doubt, I am glad that not only do I have a choice of biologics, I am also lucky enough to have an insurance company that pays for them. I have spent time off of biologics while waiting for surgery or recovering from an illness and that time is not fun. I just recently had my second Simponi Aria infusion and can definitely say that I need these drugs. Since my second infusion, my “rheum flu” seems to hit me a little later and a little weaker than it used to. I am getting better sleep at night and can definitely feel a bit more energy in my body. I don’t feel amazing by any means but I feel better. And better is my goal.

For some reason, tonight I thought of my appointment with a Hematologist, two years ago. At that time, I had been diagnosed with RA for a year and a half and I was being treated with Methotrexate and Humira. After being on Humira for just under a year, I got really sick. Months of a fever, sinus infection, ear infections, bronchitis, etc. My PCP couldn’t figure out what was wrong so she sent me off to a bunch of specialists, including a Hematologist.

I really liked the doctor I saw. He was thorough and seemed to take my issues/concerns seriously. I had some purple, very swollen lymph nodes behind my ears that he wanted to keep an eye on. Towards the end of my visit, he looked at me and said that he really thought Humira, or any other biologic, was too strong for my already immunocompromised system (Type 1 Diabetes & Hashimoto’s). He said he understood what they could do for my RA but was strongly concerned that he would see me back in his office, many years later, with lymphoma.

At that time, I remember being worried about what he had said, but I was honestly so sick, I couldn’t take on another thing to worry about. Fast forward to now. I just finished month three of Enbrel injections and am now on a two week break due to a second sinus infection since starting the drug. My lymph nodes behind my ears are swollen and painful to the touch (as they often are when I’m sick) and for some reason, my hematologist visit popped into my head.

It’s very easy for me to say that I’d rather have years of my life where I could walk, still work, etc, than to give all of that up because of my chance of getting lymphoma. Is that an educated decision? No. I know that without biologics, I feel like absolute crap. I can’t be a wife, mom, employee, or friend without them. I don’t want a life without them. Or at least I don’t think I do.

Has anyone else seriously weighed the risks of taking these dangerous drugs? Have you decided not to take them? If so, how do you manage your RA?

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5 comments

  1. rick phillips

    Molly, I knwo I went off biologics for three months and felt like I had lost my life. I was coming off that Lupus like reaction and was given the choice to use RItuxan or go without. i told the doctor I could not use Rituxan. He wished me well and asked to see me again three months. At the end of the three months i crawled into his office and begged for Rituxan. I have had shingles and some of the most painful infections I have ever thought existed. But I also played the game of life on the floor with my grandchildren last week end.

    I like being on the floor with the grandchildren a lot. After all our six year old has learned ot play marbles and he is a very good. I love getting beat at marbles., i love it a lot.

  2. Cathy

    I have finally come to the conclusion that I have no control over my future and diseases except to make the best choices I can with food and lifestyle. Otherwise, I need to consider the now. Right now Enbrel does amazing things for me. It took me years to be okay with them but I have had six years of mostly pain-free days after years of barely being able to walk. Will I get lymphoma? Who really knows. I was told my immune system would be compromised, but I rarely even get a cold. It might be lymphoma but it might be something else I never could have imagined. I’d rather live now and see what happens.

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  4. Frank

    Thanks for the insight into biologic medication, Molly, and I’m glad it’s given you the ability to be all of the things that you are. I feel like I have a better understanding when I see you post about Methotrexate and what it does for you, so thank you.

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