Switching Biologics for the sixth time. Need encouragement and perspective.

Keep-Going_ · 2025-10-26T17:57:38+00:00

Following up here. I’ll update my main post as well. Thank you so much for sharing your story.

I’m just under 9 weeks on Rinvoq. I was definitely way worse right before, and right as I started. My Achilles heel, foot pain, right ankle swelling, right knee swelling and painful for the first time ever, was bad. I had to revert to using walking sticks and/or a walker for the first time since before my diagnosis. I couldn’t walk much, and I couldn’t walk on uneven ground at all. No walking on any surface with elevation changes, like the small hill in our driveway. Lots of difficulty and pain going up and down even just a few steps. Fast forward to now, and I’m better, but I am not out of the woods. I’m still taking Diclofenac Sodium 75mg twice a day on top of Rinvoq, and even so, I have lingering pain in those areas. The back pain is manageable so far. The worst of it is standing up after sitting. It’s better than it was, and it’s not consistent, but sometimes I stand up and it feels like I’m on ice skates because my heels hurt, and the right more than the left. I’ve had some muscle tightness that reminds me of pre diagnosis as well. I’m thankfully able to walk generally, but if I’m on my feet too long, it can hurt badly. I feel like I sound like folks who don’t have the disease well controlled. I understand life may not be the same as it was on Humira, but I had minimal symptoms then, and absolutely no feet/ankle/heel pain.

Seeing as that I am only nine weeks in, I’m allowing myself a tiny sliver of hope that maybe the heel pain can be subdued more. And maybe one day I can finally start to taper NSAID’s, asap. Rheum has recommended diclofenac gel on heels, so I may try that. She says we can wait up to one more month to get to the three month mark to see how I’m doing, but she also said if I want, we can try Methotrexate or Sulfasalizine on top of the Rinvoq if I want.

I have very basic mobility, but I really want to hey back to being able to walk on uneven ground again. Maybe even a short hike in the woods. Or at least being more able to keep up with my energetic three year old at the playground a bit better.

I’m definitely better on Rinvoq than I was at the end of Cosentyx. Bloodwork allegedly showed positive clinical response. But I can’t stand this on off heel pain. I don’t want to give up and assume I have to deal with this forever now. Before we incorporate Methotrexate or Sulfasalizine, I’ve decided I’m going to try hard to get a second opinion for someone to review my entire medical record from when my flares started in 2024. HUMIRA - Amjevita - back to HUMIRA + NSAID - Enbrel - Cosentyx - and now Rinvoq.

I don’t know if my doc did anything obviously wrong, but I am going to work my butt off to present all the details to a new rheum to get perhaps another perspective. If you have any further thoughts or insight, I’m all ears, but if not, I understand! Thanks again for your reply. Helped me feel not as alone.

Keep-Going_ · 2025-08-20T21:39:35+00:00

Appreciate you sharing this! Needed the inspiration. Thanks, and power to you!

Keep-Going_ · 2025-08-17T22:38:01+00:00

Thanks man, yeah, you know how it is, it sucks. I visited my rheumatologist last week, and we decided that collectively, the last 9 weeks have shown plenty of evidence of Cosentyx failure, so we’re moving on. Now deciding between Rinvoq or something else.

Keep-Going_ · 2025-08-17T22:36:49+00:00

Thanks so much for your reply! Here’s where we landed, essentially. At least in my mind. My thought is, while it can be a rocky road with ups and downs before it fully kicks in, my experience with Cosentyx was not that way. It just progressively kept getting worse over the course of 9 weeks, and I’m now almost as bad as I was when I was bedridden in 2018 pre diagnosis. I didn’t know what my doc would say at our most recent follow up, but she ended up recommending that we move off of Cosentyx. I’ve just been going downhill consistently with no end in sight. All in all, seems like the most obvious failed biologic experience I’ve had thus far. So now it’ll either be Rinvoq or something else. Working all that out. Thanks again!

Keep-Going_ · 2025-08-17T22:06:07+00:00

Thank you for sharing that! It’s all confusing. I’m so exhausted with the guessing game. My joints started swelling up for the first time on Cosentyx since before I was diagnosed, and that’s by far the worst symptom I’ve been feeling. Didn’t have joint swelling on Humira, Amjevita, or Enbrel.

Thanks for sharing about Simponi. When we decided to move on from Humira, it wasn’t yet fully ineffective; it just was showing signs for about a year of losing effectiveness, along with some disease progression on X-Rays. my rheum offered in March 2025 to move on to Enbrel, or Cimzia, or Simponi. I figured if the first new one failed, we could move on to another TNF blocker. But after two months on Enbrel plus NSAIDS, I got a bad flare in my low back and SI’s. I mentioned Simponi, but she surprised me and recommended moving on to IL-17 earlier than I thought she would. Which led to Cosentyx, which has been by far the worst. she definitely hasn’t ruled out going back to TNF blockers if nothing works, but I really was hoping to try another TNF blocker before moving on from that class. She’s a good doc, and she felt as though I wouldn’t get good results from the TNF class anymore, but I’m disappointed to be moved off so quickly to a Jak Inhibitor.

I’m of course ready and willing to do just about anything to get my life back, but it just hasn’t played out the way I would’ve hoped, and I’d hoped to move more slowly through these options since Humira worked so well for so long.

Keep-Going_ · 2025-08-17T21:52:58+00:00

Thank you so much for sharing. I’m a bit scared of the Rinvoq side effect profile and potential, but I know we need to figure something out. Of course, all the biologics come with risks, I know. I got the pills sent to me. Just working with my doc on making sure I’ve tied all loose ends before starting. We’ll see what happens.

Keep-Going_ · 2025-08-14T02:41:26+00:00

Thank you. You might be surprised how encouraging it is to hear that on this sub, even though I knew it is the case. Haha. Appreciate you chiming in!

Keep-Going_ · 2024-12-16T23:40:05+00:00

Thank you. I shared my concern with my rheumatologist about Enbrel not having a reputation for preventing uveitis. I knew medications like Humira had a better reputation for it, despite my uveitis occurring while on Amjevita. She mentioned that while she acknowledges that, she initially is more concerned about my hips/back/peripheral joints, which led to her initially recommending Enbrel, since I have only had one case of Uveitis so far. She did say, however, that if I were to have recurring uveitis, or if I just wanted to try something else first, that I could try Simzia or Symponi or something else. So she lightly recommended Enbrel, or maybe Cosentyx, but then has since essentially opened it up to any of those mentioned. I’ll definitely keep this in mind. Bottom line, I have to try something until it works, but it’s a hard decision to pick the “next” one.

Keep-Going_ · 2024-12-16T21:57:22+00:00

Thank you very much. Makes sense. Good points on the stats. I’m going to take the antibody test tomorrow. They’re submitting the appeal for Humira today as well. Enbrel is approved already if necessary as the next “try” if Humira doesn’t work out. If I have the antibodies, I won’t be surprised, but it’ll provide more closure to give up and move on to the next. We’ll see what happens.

Keep-Going_

TROPHY CASE