I am seriously considering not taking anymore biologics

Biologics and their offspring seem not to work very well for me. Since 2000 I have tried about a dozen starting with Remicade and ending with Xeljanz. Two, Methotrexate and Xeljanz were particularly malevolent, made me really sicker. Most were benign or I was un-responsive, Two or three like Enbrel were promising for a while but then quit without so much as a bye your leave. I have tried T cell modifiers, B cell modifiers, immune cell cappers: they have been taken by the day, week or month: and ingested either by pill, injection or iv, all with the same results: no cigar.

This is neither a rant nor a whine. It is a question. Having had a no name association with RA for 20 years along with no biologics to treat it, I am well aware of its proclivities to create pain, fatigue and mayhem to our bodies. I know what a mind bending flare is like, lights one up from your nose to your toes. and I know all too well about the few tools available to deal with it.

I have been off biologics since late January 2018. Xeljanz was tearing up my intestines so I stopped taking them. Two attempts to restart were failures. I am know waiting approval for Kevzara, a drug with equally nasty side effects.

Contemplating a trial with biologic number 13, and I am asking myself the question, “am I better off not taking biologics and dealing with RA with the pain killers and ice”. This is tough question. Having 9 weeks of experience with no biologics, having beaten back several descent flairs with Percocet’s, valium and cyclobenzaprine, and knowing that my daily pain levels seem similar to what was experienced while on biologics, I am remembering what life was before the year 2000.

Another way of saying this is, for me I do not know if the last 18 years of association with biologics were better than if we had not met. My RA seems to have progressed, whether at a normal or stunted pace I know not. It is just that, on a comparison bases, I am not sure that biologics were worth the trip.

confused in Frisco

Larry

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Comments

View Comments (11)
  • Piano14
    4 months ago

    Hi Larry. Thanks for sharing your story. I totally get your question about whether or not you would have been better off or not without the biologics. It’s 20 years for me. I’ve been on 3 different ones. At my last doctor’s appt she commented on all my swelling. The doc seemed really baffeled that I had so much swelling even though I take so many meds. Really? She seemed to want to switch me to something else as if it would make a difference. Fool me once… Anyway, I don’t think you’ll ever get an answer to your question. Maybe they’ll figure it all out someday, but probably not in my lifetime.

  • Larry Sawyer author
    4 months ago

    Piano14, am having a hard time figuring out you nom de plume, you started taking piano lessons when you were 14 months old, or you are the 14th kid in a family named piano.any way it is cute. I think we need doctors who specialize in treating the side effects of RA. Cause the only time i know that my RA doc is doing me ok is when I am in remission, and i have no hard evidence that it was due to the biologic or the God’s decided to smile on me for a moment in their time and 5 months in mine.As you can see in my bio, I have tried a lot of bio’s with no cigar so i have no idea what works. As I said,Kevzara seems to be keeping from having off the chart flairs but living at a 5to7 pain level is no joy. I agree, the cure is out their but at 75 years, not in my lifetime. be well and keep on trucking
    Larry

  • Floriann
    5 months ago

    You could ask for the new Jack Inhibiter treatment called Olumiant, it is working quite well for me, with no side effects, thank goodness. Good Luck.

  • Larry Sawyer author
    5 months ago

    Florianne I took one last run at biologics, Kevzara, It seems to be working and so far no nasty side effects.First one that worked since 2013. I have my fingers crossed. I will record your recommendation in my medical journal and if Kevzara goes left on me I will recommend it to my RA doc. thank you, be well and keep on trucking

  • Monica Y. Sengupta moderator
    4 months ago

    Hey Larry! Glad to hear Kevzara is working so far! I hope you continue to trend upwards!! ~Monica

  • John.simms
    6 months ago

    I have had RA for the last 7 years and this year has been hard on my hands and feet. I was on Methotrexate, Simponi, Sulfaziline and Plaquenil, but the pain was intense. I was taken off of Simponi 3 years ago because I developed cancer on my back. After 3 years cancer free, the pain has gotten so bad that I have recently been put on Humira….I hope that helps. But I totally agree that sometimes I just want to quit with all the meds but when I have tried to do that the pain gets much worse…I literally hate this stupid disease! I am thankful for hydrocodine so that I can get sleep at night.

  • Mary Sophia Hawks moderator
    6 months ago

    Larry, what a frustrating decision. As I’m sure you are aware, the whole point of biologics is to prevent/slow joint damage. There is no way to know if the biologics have slowed your progress or not. Before you make the decision about foregoing biologics, have a heartfelt talk with your rheumatologist, and take a look at what patients with RA looked like before biologics were available. Hoping your way becomes clear.

  • meatball
    6 months ago

    Larry, have you tried CBDoil (hemp)? It had made a world of difference for me.

  • 2wacky
    6 months ago

    Hi Richard. The ability to walk up and down steps in an almost normal way seems an important milestone. Balance is not normal but with concentration, I can do it without hanging on to something,. I am seizing on this as reason for optimism.

  • Richard Faust moderator
    6 months ago

    Hi Larry. Sorry to hear your treatment road has been so difficult. For your protection, we cannot give medical advice over the internet. Hopefully some community members can offer thoughts from their experiences. This article from one of our contributors offers her thoughts on the treatment decision, including that for some that may include an alternative route: https://rheumatoidarthritis.net/living/nothing-is-worse-than-nothing/. Your doctor may have some thoughts on options and, of course, you are always entitled to a second opinion. Truly hoping you find some answers. Best, Richard (RheumatoidArthritis.net Team)

  • Larry Sawyer author
    5 months ago

    I have had RA since 1979, I was not treated for it until 2001, My version attacks the soft tissues, I have had a total colon ectomy for chronic UC, Pancreatitis, inflammation of my go tract of no known cause, Sjogren’s. none eschemic cardiomyopathy and inflammation of all my connective tissues, nerve damage feet and hands. And incredible painful flairs with associated fatigue. It was not until 2001 that the RA folks were interested in me. Because I had ulcerative colitis causal relationships had been established between RA and UC. and a test had been developed that identified my RA. I also am highly allergic to Methotrexate, and seem to be unaffected by most of the biologics. I hope Kevzara does the job, 1st one in five years which is doing something. but I would not bet the farm Thanks for commenting Larry

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