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Medication Reset

Hi fellow RA suffers;

I hope I am not out of line asking this question on this site. I am just asking for input. That is how we learn from the wisdom and experience of others who have gone before.

I was wondering if anyone has now or in the past stopped their meds? What were the issues that you encountered?

Please let me provide some context. I stopped my RA medication mid November 2021. I did not like the side effects I was experiencing. Let me also add that I am not a proponent of long-term medication. I believe a large number of medications hide/suppress symptoms rather than cure. I believe they can cause damage to your body. I believe they lead to the need for other medications.

Removing myself from my RA meds has not been easy or smooth sailing. I am not trying to discourage anyone from taking their meds. I realize how lucky I am. I have read stories on this and other sites. I have seen the pics posted of the destruction RA has caused to the bodies it has inhabited. My RA came late in life and my RA story is not nearly as severe as those I have read.

  1. I was recently diagnosed. I am afraid to take the plaquenil they gave me about a year ago now. I'm so scared of the medication side of this RA

    1. I was to. But realised
      Once I took it how much it changed my life

    2. I never attempt to provide life decisions for anyone. Each of us has to do what is best for us. I started this post to see what other RA sufferers were experiencing when/if they stop their meds.
      I based my decision on several factors. One of the major considerations was there is no cure for RA. The meds only slow the progression. For me (I repeat "for me"😉, my diet change did the same thing.
      I have posted this several times in this forum. I am lucky and blessed. When I read posts like L rick Phillips, Jo Johnson, Richard Fausts' wife, etal, I thank my higher power for these blessings.
      EveryOne, please keep posting your stories. That was the reason for the post. We want to hear the Good, Bad and all the Options.
      T0 clmtkel, do your research, confer with your doctor and someone you trust. Continue to visit this forum, aske questions and see what others are saying. Then make the decision that works for you.
      Be well,

  2. Hi Clmtkel, thank you so much for responding. I know exactly how you feel. The immune system is the only protection our body has. My worry was the medication suppresses the immune system and so does aging. So basically (if you're older) you're walking around nude to the germs, infections, etc of the world. I recognized some negative changes in my body. But what about the negative changes that were going on that weren't showing any signs (yet).

    1. Hi, I want to comment on one aspect of what you might misunderstand about modern RA medications. I can almost see the stress in your response. ALl modern biologic medications do act to suppress the autoimmune system. What is not well understood is that the targeting method is more and more precise. No longer do modern medications suppress your entire immune system. Instead, they target only the part that is causing damage.

      Suppose one were to think of a wall as your autoimmune system. The wall blocks all manner of bad things. But this one little part is causing joint damage. Our modern medicines do not suppress the entire wall. They only suppress the one small part that is negatively impacting our bodies.

      Even the oldest medications targeted a small potion. But thankfully, our newer medications are exact.

    2. gave such a great answer - I hope this is helpful! - Reggie, team member

  3. Hi fellow RA suffers;

    Sorry for the delay in responding, I've been a little busy. I can’t speak to the advancements Methotrexate has made in targeting its treatment. I can just speak to my experience. RA attacked my fingers and hands but predominantly my wrist.

    Methotrexate missed the above target and attacked my eyes (ie. Methotrexate-related ocular toxicities include conjunctivitis). My eyes like everyone’s else is nowhere near my wrist. (smile). I regularly have to have a blood test to ensure it has not adversely affected my liver and caused liver damage.

    I experienced other things that have cleared up since I stopped taking Methotrexate. Like I stated before, it appears I am lucky. My RA occurred late in life; it is not nearly as severe as other attacks I have heard of on this site and others. My being off Methotrexate is relatively new (just a few months). As I also stated before it has not been easy. The main issue has been identifying the triggers and avoiding them. My main trigger is sugar and I l-o-v-e desserts. I am now an avid label reader.
    Be well,

    Here is another caution for Methotrexate users:
    Taking methotrexate may increase the risk that you will develop lymphoma (cancer that begins in the cells of the immune system).If you do develop lymphoma, it might go away without treatment when you stop taking methotrexate, or it might need to be treated with chemotherapy.

    The World Health Organization categorizes MTX-LPD under“ other iatrogenic immunodeficiency-associated lymphoproliferative disorders .”MTX-LPD consists mainly of diffuse large B-cell lymphoma (DLBCL; 35–60%of cases) and classical Hodgkin's lymphoma (12–25% of cases) [2].Apr 25, 2019

    1. Hi . Sorry you had these eye issues. As you, unfortunately, have learned. conjunctivitis is one of the ocular toxicities that may occur with methotrexate. Regular monitoring of liver function should also occur with methotrexate (along with use of folic acid to mitigate the liver risks).
      I do want to clarify something Rick was saying. He referred to modern biologic medications and their more targeted nature in relation to the immune system. Methotrexate is not a biologic. It is an older DMARD that is more of a blanket immune system suppressant. This is why, in much higher doses, it can be used as a cancer treatment. It is also why the American College of Rheumatology recommended pausing methotrexate for the COVID vaccine.
      Biologics target specific inflammatory biomarkers within the immune system. For example: Enbrel and Humira are tumor necrosis factor (TNF) inhibitors, while Kevzara is an interlueken-6 molecule inhibitor. That said, while they may target a smaller part of the immune system, they still can have side effects that impact a wide range of bodily areas and systems. These side-effects may be separate from the immunosuppressant nature of the medications action. They also can still make a person more susceptible to infection, they just are not blanketing the entire immune system like methotrexate. Hope this clarifies a little bit. Best, Richard ( Team)

  4. Hi Richard, thank you for the clarification. But my original question was "I was wondering if anyone has now or in the past stopped their meds? What were the issues that you encountered?" I merely mentioned Methotrexate because that was the med that I was on.
    I would still like to know what others have experienced. Whether they were on DMARD's or Biologics. Although I prefer ex-DMARD patients since I know nothing about biologics. At this point I'm stumbling through this process and could use some experienced input, if possible.

    Be well,

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