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A myRAteam Member asked a question 💭
Chicago, IL

If you ask the rheumatologist to take you off your medication either because you don't feel it's working or you don't want to be on it anymore, will they? Has anyone done this before or?

April 30, 2016
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Answer Summary

Members overwhelmingly affirmed that patients have the right to discontinue RA medications with their rheumatologist, with many sharing... Read more

Members overwhelmingly affirmed that patients have the right to discontinue RA medications with their rheumatologist, with many sharing personal stories of stopping treatments due to intolerable side effects like hair loss, weight gain, nausea, and organ damage concerns. Several members described transitioning off medications to pursue anti-inflammatory diets (particularly the Paleo approach), organic eating, and essential oils, with some reporting significant pain relief and weight loss after clearing their systems and starting fresh. A recurring theme was the importance of open communication with doctors who truly listen, the need to balance quality of life against medication risks, and the understanding that while some found relief through natural approaches, others emphasized working collaboratively with rheumatologists to find the right treatment rather than abandoning all medications entirely.

A myRAteam Member

Yes. A good dr will. I'm off my meds and following an anti inflammatory paleo diet as my "treatment" so far so good. I got tired of putting chemicals in my body that made me feel like crap and made my hair fall out really bad. I figured, if it's killing my hair what's it doing to my organs.

April 30, 2016
A myRAteam Member

It is your body, your choice!!!!! Hopefully you have a rheumy you can talk to. When I have med issues I talk to my rheumy about my issues. We talk about alternatives, he may ask me to give the med a little longer trial, but he listens and offers feedback. He would never tell me to stay on a med I no longer wanted to be on.

April 30, 2016
A myRAteam Member

@A myRAteam Member im now 2 months into my nutritional plan. I'm down 18 pounds and feeling good. I still have prednisone on had in case of a flare and tramadol for days I feel I need one. This seems to be working for me. I hope you find a path better suited to you. I understand the desire to get far away from the medication and side effects. Good luck to you!!

May 3, 2016
A myRAteam Member

I just stopped taking mine at one point. I had been taking a long list of meds for a very long time (5+ years) and I had gotten to the point that I was sick on my stomach everyday for almost 2 months. So before Christmas of this past year I stopped them ALL! I was upfront with my doctor when i went for my next visit and I told him I just couldn't keep doing it. I felt the meds were doing more damage than good. My pain got bad, really bad. It was to the point that I had to have help to get to and from the bathroom. I couldn't go upstairs, I slept on the sofa for 3 months! My husband was super supportive though. My doctor said,"I don't recommend that my patients do this, but in your case it's good." He said I had cleared my system of everything so we could try something new. Now, I'm on different meds and am happy with the results. I have gained 10 lbs, but I will just have to work harder to get it off!

April 30, 2016 (edited)
A myRAteam Member

I don't take any RA meds , allergic to NSAIDS, plus RA doc isn't convinced ? I tested positive. it's enough to deal with being gluten free , my digestive issues make it hard to keep weight on, the cortisone-steroids , asthma and copd meds are enough to deal with , my regular doc has said she won't prescribe hydrocodone any more , I refill once every three months , not sure what I will do if I have another flare , so far, diet and finding something enjoyable which for me now is church, helps more than anything . I'm alone in this now , hate taking meds , and tired of doctors dropping the ball, not listening, and copping an attitude because I ask questions. My goal is less meds. Seems the more I take the worse I feel, just don't think the side effects are worth it.

April 30, 2016

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A myRAteam Member asked a question 💭
Oshkosh, WI