anyone not on meds for Rheumatoid arthritis??

Posted by tisme @tisme, Nov 28, 2025

I am now not on meds due to issues , seeing the rheumatologist next week after I took myself off the meds. See what she says.

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Profile picture for tarmansbks @tarmansbks

I ended up in the emergency room two years ago due to acetaminophen toxicity. I was taking two Excedrin Migraine per day which did not exceed dosage. I was in the hospital for three days on a drip to detox. I was in serious danger of liver damage. Please watch your Tylenol intake and make sure your liver is not being impacted. I have R/A and now have serious osteoporosis after 12 straight years of medrol. It took me 14 months to get off it with help from endocrinologist. I had to restart medrol this June and now am again under endocrinology care to get off it. I was not getting relief anyway. I fortunately did not develop the other steroid danger of diabetes. I get along with light exercise, and deep tissue therapy from P/T. Gabapentin helps and I tolerate it. I hope you find relief as I understand how we all muddle through therapies.

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@tarmansbks that is what I worry about , I have non alcoholic fatty liver ( due to diet ) so I dont want to upset it even more with drugs but the pain of arthritis i dont like either , I worked in age care I saw the women with arthritis I know what is coming.

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the liquorice root etc are they in capsules ??

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Profile picture for tisme @tisme

@tarmansbks that is what I worry about , I have non alcoholic fatty liver ( due to diet ) so I dont want to upset it even more with drugs but the pain of arthritis i dont like either , I worked in age care I saw the women with arthritis I know what is coming.

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@tisme I live in a continuing care retirement community in independent living for now. I see all too well the damage of all the arthritis spectrum. I also have weakness and pain from having complete paralysis from polio at 9 months of age. I am touchy about so many meds so have learned to view pain dispassionately as redemptive suffering a philosophy which I appreciate few denominations subscribe to. But we all need our mechanisms to endure.

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Profile picture for adlttl123 @adlttl123

@susanlf Why on earth would your doctor not give you RINVOQ?? I’m on it and it’s doing miracles for!! Maybe a new Rheumatologist???

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@adlttl123 the rheumatologist from Flagstaff and Mayo plus my pulmonologist all said no to RINVOQ because of the black box warnings. Now I believe Kevzara has similar warnings.

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Profile picture for tisme @tisme

I hurt, especially in our hot veeeeeery humid summer weather that we are getting now. hope she can come up with something. I feel its like " if the illness doesn't get you the treatment will.

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@tisme
I'm interested in people with a diagnosis of a progressive illness, and how they find a good quality of life without medication. I have been on Remicade 2 years and now 9 years with Simponi. I get infusions every 8 weeks in this time. For me, I feel very ill when I'm about 6 weeks out. Medicare will only pay for infusions of meds, not pills. So I'm glad to have this treatment and it's not "getting me"! I have never had side effects from the infusion. Only severe pain and fatigue without it. I believe it's an individual experience so I share mine here.

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Profile picture for tarmansbks @tarmansbks

I ended up in the emergency room two years ago due to acetaminophen toxicity. I was taking two Excedrin Migraine per day which did not exceed dosage. I was in the hospital for three days on a drip to detox. I was in serious danger of liver damage. Please watch your Tylenol intake and make sure your liver is not being impacted. I have R/A and now have serious osteoporosis after 12 straight years of medrol. It took me 14 months to get off it with help from endocrinologist. I had to restart medrol this June and now am again under endocrinology care to get off it. I was not getting relief anyway. I fortunately did not develop the other steroid danger of diabetes. I get along with light exercise, and deep tissue therapy from P/T. Gabapentin helps and I tolerate it. I hope you find relief as I understand how we all muddle through therapies.

Jump to this post

@tarmansbks
Such a good reminder about tylenol!! My rheumatologist told me 1500 mg/day (instead of 3000mg/day on tylenol label). This is because of other medication I take , and my RA infusion, that is processed by the liver.
Also, a lower daily dose because of the chronic use for pain. And remembering that other meds might have tylenol included.

Your share is an eye opener! About "not exceeding dosage" yet having to go through emergency detox. That is a scary experience.

Would you please give us an idea what your symptoms were that led you to the emergency room?
Thanks

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Profile picture for jw9 @jw9

@tarmansbks
Such a good reminder about tylenol!! My rheumatologist told me 1500 mg/day (instead of 3000mg/day on tylenol label). This is because of other medication I take , and my RA infusion, that is processed by the liver.
Also, a lower daily dose because of the chronic use for pain. And remembering that other meds might have tylenol included.

Your share is an eye opener! About "not exceeding dosage" yet having to go through emergency detox. That is a scary experience.

Would you please give us an idea what your symptoms were that led you to the emergency room?
Thanks

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@jw9 Day after day of unrelenting migraine with no surcease. Finally went by ambulance to Hershey medical center emergency room. Only had the headache but the ED on call was young and his policy was to do a toxic screen for different substances like opiods or cannabinoids and it turned up my acetaminophen level was a fiery red 25 which indicated liver toxicity. If he hadn't been so sharp as to request that blood panel I would have been in a very bad place. I had a 24 hour drip to reverse the damage and another two days of observation. I weigh 119 lbs so I don't know if being slight was a contributor but I definitely did not exceed the dosage on Excedrin for migraines. I have ceased any acetaminophen and Excedrin products. Hard lesson that turned out lucky it was caught in time.

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Profile picture for tarmansbks @tarmansbks

@jw9 Day after day of unrelenting migraine with no surcease. Finally went by ambulance to Hershey medical center emergency room. Only had the headache but the ED on call was young and his policy was to do a toxic screen for different substances like opiods or cannabinoids and it turned up my acetaminophen level was a fiery red 25 which indicated liver toxicity. If he hadn't been so sharp as to request that blood panel I would have been in a very bad place. I had a 24 hour drip to reverse the damage and another two days of observation. I weigh 119 lbs so I don't know if being slight was a contributor but I definitely did not exceed the dosage on Excedrin for migraines. I have ceased any acetaminophen and Excedrin products. Hard lesson that turned out lucky it was caught in time.

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@tarmansbks
Thank you so much for sharing the details of your experience. Gratitude for a young doctor who follows protocol! I hope others see this. You've added to our group's wisdom. Wishing you all the best after a "hard lesson."

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Profile picture for susanlf @susanlf

From August 2024 to July 21, 2025, I was on prednisone, then methotrexate, then kevzara, then humira. Nothing alleviated my horrible pain. I now take Tylenol Extra Strength daily 2,000 mg and Tylenol PM at night. Barely takes the edge off the pain. Due to bone deterioration (a shingles shot kick started this horrible adventure), I had my left shoulder replaced 4 weeks ago, with my right shoulder to follow asap.

I begged for Rinvoq but rheumatologists said NO WAY. I will pray your physician can find the right medicine to help you. Please post how you are doing.

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Profile picture for jw9 @jw9

@tarmansbks
Thank you so much for sharing the details of your experience. Gratitude for a young doctor who follows protocol! I hope others see this. You've added to our group's wisdom. Wishing you all the best after a "hard lesson."

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@jw9 Thank you. I recently read three books by Atul Gawande describing his years as a resident and surgeon. Lots of examples where things went right or wrong and I decided medicine is as much art as science. These books are not difficult to read and understand. The final book is Being Mortal and anyone of "an age" should find his philosophy insightful.

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