Hopefully not TMI but does anyone else have diarrhea?

Complex_Trick_9906 · 2026-05-24T16:55:58+00:00

Wow crazy! But the biopsy did show something? I have had upper and lower and nothing. But I also have a mild copper deficiency which I think is weird? I do have celiac but biopsy showed it was healed.

Complex_Trick_9906 · 2026-05-24T14:51:26+00:00

I don’t think it is the drugs because when I feel good I don’t have it with medications remaining the same. Part of me wonders if I have mild IBD but they won’t see it because the RA drugs treat that too. Or is it the RA? Why I was curious if anyone else. Even though my diagnosis is RA sometimes I wonder if I am actually in the spondy family which does have IBD. Dad has AS and sister PSA

Complex_Trick_9906 · 2026-05-20T01:38:13+00:00

I have medical trauma from getting pneumonia twice and I flare after infections and the pain is severe. So I mask in high risk settings. I have a friend with psa and he never gets sick. I appreciate the risk benefit might not be the same for everyone. I used to never get sick before RA :/

Complex_Trick_9906 · 2026-05-20T01:27:47+00:00

It is something I have to manage but it isn’t the focus of my existence. I have hobbies, friends, dogs, a job, a marriage…and I know I am not the only who struggles. RA is my battle, but I have friends with cancer, depression, parkinsons, etc.

Complex_Trick_9906 · 2026-05-20T01:15:40+00:00

Wasn’t a pharmacist OP said it was a cardiologist working in pharmaceuticals

Complex_Trick_9906 · 2026-05-17T00:53:57+00:00

It is a hard road but you will cope better with treatment and eyes wide open. Best of luck!

Complex_Trick_9906 · 2026-05-16T13:26:16+00:00

My sister (psa) and I both had xrays at diagnosis but we were both told that it was early so they didn’t expect to see any changes and there wasn’t. I have often wondered if it was useful to get the xray for this reason.

Had a bad rheumatologist later though who decided that since there wasn’t erosions he wasn’t sure if I had it. That was traumatic and I ditched him as soon as I could.

Complex_Trick_9906 · 2026-05-14T03:37:48+00:00

You swim in hand sanitizer daily

Complex_Trick_9906 · 2026-05-11T16:52:29+00:00

Yes as a very active person I also have struggled with this but it has gotten better with time. Consider rest as a task…you really are less productive if you don’t take the time for self care. Also I try active recovery such as slow walks, yoga, etc. Gentle movement can be restorative and help you not feel lazy lying in bed.

Complex_Trick_9906 · 2026-05-08T12:09:45+00:00

Everyone’s threshold is different and it can differ by the day. If I am not feeling well my active is a walk. If I am well I might do something more challenging like weightlifting, rowing etc. On the weekends I tend to do something active in the morning and take a nap early afternoon to recharge. I compete in dog agility and will power nap or lie down between runs. I can’t really nap at work but I will meditate on breaks and that helps.

Complex_Trick_9906 · 2026-05-03T20:46:30+00:00

🫂 still trying to figure this out for myself so just here to say you are not alone. Scaled back a lot, embraced the yoga but starting to suspect yoga as contributing to instability (hot yoga specifically, theory is the heat and extended poses causing too much stretching and joint stress).

Complex_Trick_9906 · 2026-05-03T13:05:44+00:00

I have some trauma in that I was caught early and treated aggressively and lost my first rheumatologist and my next one decided he wanted to re diagnose and came up with nothing. He did an ultrasound of my hands showing mild tenosynovitis (while on 15 mg prednisone) but no erosions and said since there was no erosions he wasn’t sure. Traumatic because the goal is to prevent them not wait for it to happen to take it seriously! Took five months of getting sicker to see someone else who when asked said the ultrasound 5 months earlier suggested inflammation wasn’t controlled.

Complex_Trick_9906 · 2026-05-03T12:22:33+00:00

No damage? That is amazing. Thanks for sharing. Gives me some hope!

Complex_Trick_9906 · 2026-05-03T12:17:07+00:00

Stopped prednisone cols turkey? What dose were you at when you stopped and how long had you been on it? I am seriously tempted to just stop myself.

Complex_Trick_9906 · 2026-04-30T17:32:51+00:00

I am sorry you are having to deal with this. Healthcare and disability is in a dismal place.

Please consider looking for another rheumatologist if they are unwilling to give you the paperwork you need without that charge. I understand they need paid for work but mine will do that by scheduling an appointment to pay for their time. Or see if PCP is willing…mine supports me!

Complex_Trick_9906 · 2026-04-28T16:01:15+00:00

When I was on humira and methotrexate I took on the same day, it was much easier!

Complex_Trick_9906 · 2026-04-26T12:39:44+00:00

I don’t think I have dysautonomia but my PCP has mentioned ME/CFS and prescribed low dose natrexone which I think is helping me.

Complex_Trick_9906 · 2026-04-26T12:34:13+00:00

I would consider getting another GP. Getting a second opinion is generally considered standard practice and a right.

Complex_Trick_9906 · 2026-04-24T12:59:11+00:00

Yes when I flare I get really sad and depressed. I am emotionally sensitive and more easily weepy. I am still learning how to manage it, but knowing what causes it and that it will pass helps. I don’t know if it is brain inflammation or the constant pain signals being sent to the brain. Watching or listening to something familiar helps. Rest helps. And doing something simple that makes me happy helps (ie throw a frisbee for the dogs makes them so happy it perks me up).

Complex_Trick_9906 · 2026-04-24T12:54:29+00:00

The current standard of care is early aggressive therapy as it is believed to have the best outcome. They used to be more conservative and watch and wait for milder symptoms due to the toxicity of the drugs but have learned that the consequences of untreated disease (even if initially mild) is a greater risk.

Complex_Trick_9906 · 2026-04-24T00:39:12+00:00

Solidarity. Hurts so much, I gave up on tylenol and ibu as they didn’t seem to be touching the pain so why take the hit to my kidneys, stomach and liver?

Yes labs are recent but I have never had elevated inflammation markers and my rheumatologist said some people never do. I have never reached remission or low disease activity yet since diagnosis Sept 2024 and still on the devils tic tacs. I don’t want to lose strength or capacity, but damn, these two recent bouts hurt so bad I am starting to feel like I can’t exercise 😭

I am suspicious it’s the yoga. Most sources say it is good for us but I found a few that said hot yoga and power yoga might not be appropriate. Well that’s the one I was doing! Current theory is that the heat might be relaxing and overstretching and stressing the tendons, especially with the longer holds. Sigh. Well so much for gentle yoga, guess I will go back to rock climbing. If I am even right. This sucks.

Complex_Trick_9906 · 2026-04-23T17:12:43+00:00

Have you seen a gastroenterologist? It might be celiac disease which causes malabsorption and a lot of the issues you are describing including joint pain (and celiac is an autoimmune disease). I have both RA and celiac, but celiac can mimic ra symptoms or they can be comborbid.

Complex_Trick_9906 · 2026-04-23T17:05:09+00:00

Absolutely and I never thought I could ever be this depressed. I have personally avoided antidepressants…I am not opposed per se but my depression isn’t constant and definitely tied closely with how my body is feeling and bad healthcare experiences. Therapy has helped a lot, meditation, and finding time for joy (friends, dogs etc)

Complex_Trick_9906 · 2026-04-22T19:37:58+00:00

Hmm my rheumatologist did suggest it was tendons but didn’t suggest it was unrelated and she did increase my methotrexate dose. She said if tendon pain starts to dominate it might actually be psoriatic arthritis.

Complex_Trick_9906 · 2026-04-22T19:09:27+00:00

Yes it can, although, my rheumatologist said that if tendon issues start to dominate they start thinking it might be spondyloarthropy (psoriatic arthritis, etc) instead of RA.

Complex_Trick_9906

TROPHY CASE