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Was anyone else fearful of medication?

I was diagnosed a couple years ago. And my rheumatologist said this just did just appear. I was diagnosed with RA lupus, Sjogren’s disease, osteoarthritis in one day. But with all the side effects of the medicine I am fearful of taking it. But then on the other hand I’m scared I’m not taking it. I have a prescription for injections. But they also want me to keep taking their Methotrexate and the Plaquenil. I’m just unsure what to do I really don’t want to take all of those meds. Before I ran across this page, I really have not heard about a diet my rheumatologist did not mention it..so now not taking meds, most days terrible pain stiffness. Maybe y’all got some feedback for me thanks.


Community Answers
  • Franki King moderator
    1 month ago

    Hi @melanie68,

    I am definitely fearful of medication!! I’ve had RA for 7 years which means I’ve also been on medication for 7 years now. It scares me to continue on this path for the rest of my life so I have been doing a lot of research on how diet affects RA. I recently adopted a plant based diet and I’m seeing how it goes. I don’t plan on going off medication any time soon because it has saved my life in many ways but I am definitely open to other possibilities.

    I hope this helps!

    Best,
    Franki

  • Richard Faust moderator
    1 month ago

    Hi Melanie68. Your concerns about medication side effects are completely understandable and shared by many in the community. The decision to be on medications (and which if one chooses to do so) is a truly personal one. Several of our contributors have written on their deliberations on the subject. In this article Tamara writes about her decision to be on medications: https://rheumatoidarthritis.net/living/my-decision-to-be-on-meds/. Michael writes about what he calls the risk to risk ratio – balancing the risk of not medicating against the risk of the side effects: https://rheumatoidarthritis.net/living/the-risk-to-risk-ratio/. I hope you find this information useful. Your doctor should be able to help in assessing your condition and situation and what various alternatives may mean for you. Please know that this community is here for information and support. Best, Richard (RheumatoidArthritis.net Team)

  • justjoany
    2 months ago

    Yes, even as a health care professional, I was fearful of the medications. It took me almost a year before I finally told my rheumatologist that I would do whatever he recommended. Now after 30 years I am much more fearful of the devastating effects of the disease than the side effects. Yes, you have to respect the possibility of side effects and have the recommended monitoring tests. I would give almost anything to have had the newer medications which stop the joint destruction back when I was first diagnosed. As the person above said the wrong choice can’t be undone. There is really no reason for persons who don’t have medical contraindications to the medications to have debilitating joint destruction. I have taken Enbrel in the past for over a decade and it was like a miracle. It finally quit working quite as well after about 12 years. I tried Orencia and Rituxan which both failed to help. So I went back to Enbrel which still made a significant difference. Then there was Xeljanz. I have taken Xeljanz for the past few years. My response to it was even better than Enbrel. So, again respect the medications, have the monitoring lab work and try the medications. Enbrel made a significant difference in about a week. Xeljanz took about 3-4 weeks. I wish there was a test which told us what path RA takes to affect each person, still waiting on that, then we wouldn’t have to go through trial and error. Good luck and God bless you with relief and some freedom from painful limitations.

  • Kelly Dabel moderator
    2 months ago

    Thank you so much for sharing your story and experiences justjoany. Glad to hear that you have found some relief and that you and your doctor are keeping close tabs on your tolerance and labs. Thank you again for sharing! Best, Kelly, Rheumatoidarthritis.net Team Member

  • David Advent moderator
    2 months ago

    Hi @melanie68, thank you for sharing your concerns on our site. With everything you’re going through, I’m sure this is a difficult and confusing time. From my own personal experience, I was terrified of taking Humira in the beginning but have now found that this drug works for me and has significantly improved my quality of life. The only side effects I really experience are a headache and some grogginess a day after the injection, but that’s it. Obviously we cannot give medical advice, but I encourage you to talk with your doctor to weigh the pros and cons of taking these medications.

    Thank you for sharing your concerns with our community, and I wish you the best along your journey with RA.

    -David (RheumatoidArthritis.net Team Member)

  • Lawrence 'rick' Phillips moderator
    2 months ago

    When we are diagnosed we are faced with some choices. I rapidly made the choice to use medical science as best I could. That has involved injections, infusions and pills. I have not been worried except about one medication.

    That medication is the one I am taking now and it has been a miracle drug for me.

    So here is the choice we get to make; we can take the medication and stop the disease progression or we can hope it will stop by its self. but there is on caveat. if we choose wrong we cannot get function back. I think given that choice, we have little choice but to take the medication.

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