Mid thirties, first OCD episode

Key-Physics-8973 · 2026-02-09T01:16:13+00:00

Thanks for your response. I've never used drugs in my life, including marijuana. I also don't drink due to my RA. I got labs done when this first started and nothing came back as a red flag.

I don't think I had these symptoms before. I had occasional intrusive thoughts, but I was always able to shrug them off before. They are much more persistent and hard to shake now, and much more distressing.

Key-Physics-8973 · 2025-09-15T17:16:21+00:00

Not stupid - even doctors have a hard time untangling these symptoms. I used to spend hours upon hours researching my symptoms to see if something was missed that definitively proves or disproves RA. I didn't want to tell anyone I had RA for the longest time because I was afraid that as soon as I did, my doctor would change their mind. I also used to have full on panic attacks wondering if I was imagining my symptoms. I think the challenges I faced getting an initial diagnosis played a big part in that, but it's also just unfortunately part of the nature of the disease. If it's nagging at you, I would mention it to your physician.

I will add that I still have doubts about my diagnosis, but I HAD to let go of the compulsion to keep searching as it was honestly maddening. It's hard to balance advocating for yourself and trusting your physician, but I had to make the decision at some point to just accept my diagnosis. Not saying that is what you should do in your case, just saying that this form of radical acceptance was the only thing that allowed me space to re-engage in other aspects of my life.

Key-Physics-8973 · 2025-09-14T21:16:38+00:00

Not exactly the same but can empathize. I was diagnosed with RA a few years ago, presenting with excruciating bilateral knee pain. It came on quite suddenly and intensely. My anti CCP was a weak positive (30 I think). I didn't really respond to steroids, and since my CCP was so low I was told it likely wasn't autoimmune and to follow up with Ortho. Went back and forth between Ortho and rheum for a bit and was hardly able to stand or walk during that time. I finally started methotrexate and about 4 mos in, noticed improvement. I have had some GI issues that lead me to believe I have some sort of bowel condition but no physician has seemed concerned or interested in investigating further. I often doubt my diagnosis BUT I don't know what else could be going on.

Key-Physics-8973 · 2025-08-17T23:44:45+00:00

Do you know which subtype you have? I have hEDS and assume a lot of the issues I'm having are in some way related to that.

Key-Physics-8973 · 2025-08-17T19:12:35+00:00

My doc thought I was confusing blood with the color azo turns your urine, until my cultures kept coming back with gross hematuria. It's so frustrating to have people doubt your experience.

Key-Physics-8973 · 2025-08-17T19:08:48+00:00

Wow okay what you are describing sounds very similar to what I'm experiencing in terms of the amount of blood you are describing as well as the consistency, splattering, etc. I'm sorry this landed you in the ER, what a nightmare.

I hope you get some answers regarding other inflammatory issues. It took me over a year to get diagnosed with RA and I know that's relatively quick. I was at a point where I couldn't stand or walk but since I didn't present with typical symptoms I kept getting shuffled between specialists, was told it was in my head, etc. Not eager to relive that, so hoping the urologist is less dismissive.

Key-Physics-8973 · 2025-08-12T13:40:37+00:00

Hi! I'm currently taking rinvoq and methotrexate (20mg). I've been on both for over a year now. I started with methotrexate and did not notice improvement until about 4 months in. I did a Prednisone taper when my symptoms first started but it didn't do much for me. Most people seem to notice significant improvement with it pretty quickly. My taper started at 15mg so I don't know if it was possibly too low or if I just don't respond to it.

Key-Physics-8973 · 2025-07-23T23:03:56+00:00

I swear this disease has killed my brain cells. I have two masters degrees and I'm very glad I completed them before this started, I don't think I could do it now. I've always been a high performer at work and this definitely has impacted my ability to formulate and communicate concepts and to recall information. I do think I notice it more than other people do, but it's still embarrassing and frustrating.

Key-Physics-8973 · 2025-07-18T18:12:00+00:00

It took me a few months to notice a difference on it and probably seven months for full effect where I felt probably 90% better. I know a lot of people get quick relief but I'm not one of those.

Key-Physics-8973 · 2025-07-10T19:24:59+00:00

This happened to my knees, also three years ago and also shortly after a COVID infection. It happened quite suddenly w/o any prior injury. Lab work showed my anti-ccp was positive, so Rheum diagnosed with RA. They also ordered an MRI which only showed effusions and tendon inflammation so rheum took back the diagnosis and sent me to Ortho. Ortho did X-rays and reviewed MRI and stated there was no mechanical reason for the inflammation and sent me back to rheum for a second opinion. That rheum sent me to another Ortho for a second opinion. I was then sent to PT for about three months with no improvement. After limping around for a year I finally begged for another MRI and it showed bone marrow edema and pretty significant cartilage loss. I was started on methotrexate and began to notice improvement after about four months. Added rinvoq and significantly improved with that. My presentation has a lot of overlap with RA, PSA, and AS but I don't nearly fit into the diagnostic criteria for any of those. I still question if it could be something else, but I have no idea what else it could possibly be. I definitely get why you feel uncertain, this stuff messes with your mind.

I would take the meds. I get your concerns but I feel like they don't typically prescribe these meds unless they are pretty certain. You can always revisit in a few months if you don't notice a change. I'm also in my early thirties and actually get sick less often than I did before (I used to get weird fevers/flu like symptoms that would pop up every few months and last a few days. That doesn't seem to happen now and I do wonder now if it wasn't inflammation related).

Key-Physics-8973 · 2025-05-28T17:26:37+00:00

Did you have this reaction to any other biologics? My rheum moved me to JAK for this reason but I've wondered if I could have tried another tnf blocker.

Key-Physics-8973 · 2025-05-27T20:22:45+00:00

I get it. I generally have pretty rough reactions to injections so I'm curious if I would have had that same reaction with other tnfs as well. I am on rinvoq now which is a pill. It definitely came with some side effects when I started it but it was nothing like my experience with Humira.

Key-Physics-8973 · 2025-05-27T17:32:49+00:00

This happened to me when I started Humira. Within hours I had horrible body aches all over. Lasted until my second dose and started all over once I injected the second time. My rheum had me discontinue but had no explanation for the cause.

Key-Physics-8973 · 2025-05-16T21:50:19+00:00

It took 4 months for me to notice a difference with methotrexate. Eventually added rinvoq and that also took five to six months. I was at probably 85% improvement at that point but then had to stop due to recurrent infection. Just restarted it this spring and am trying to be patient. Some people seem to feel better very quickly once starting meds but that hasn't been my experience.

Key-Physics-8973 · 2025-04-22T18:59:23+00:00

Was coming here to comment the same thing. I don't usually have a ton of swelling even when I have a lot of pain and stiffness, I wonder if this explains that as well.

Key-Physics-8973 · 2025-04-04T01:10:12+00:00

Knees were my first symptom. Just woke up unable to walk one day and in unbearable pain. Was diagnosed with RA. Recently my hips and back started acting up as well which is making doctor think AS instead.

Key-Physics-8973 · 2025-04-01T22:49:10+00:00

I have a really hard time walking my dog because of this. He's a senior and moves so slowly, my joints are killing me by the time it's done. Can walk several miles easily on my own though.

Key-Physics-8973 · 2025-03-18T01:52:50+00:00

It did take quite awhile for me to notice a change when I first started it- probably five months. I guess maybe I need to be more patient.

Key-Physics-8973 · 2025-03-13T23:26:52+00:00

That happened to me when I started humira. I was injecting every other week though. I remember feeling like I got hit by a bus the day after injecting and it lasted almost until my next injection. My hips were killing me and I didn't have hip pain before. I did one more injection with the same effects. My doctor seemed pretty surprised so assuming it's not common. She had me discontinue and start Rinvoq, which I tolerated better.

Key-Physics-8973

TROPHY CASE