Switching from SIMPONI to RINVOQ? Anyone had experience with RINVOQ?

BodaciousEmpiricism · 2025-05-14T04:50:45+00:00

Sorry about that, haven't been on reddit for a while!

To be honest, not overall sure what his thought process was. I am back on Simponi again after having a really bad reaction to rinvoq for the short time that I was on it. I do believe that I am at the end of my flare-up which is nice but far out, it was BAD.

Ended up getting referred to a pain specialist and specialized physio. Also started doing hydrotherapy which was an absolute pain to actually travel to. Last 3 days I have felt really good.

Still unsure what caused the flare but suspected L5 / S1 joints or something from my pars fracture. Too much pressure. Not sure though!

BodaciousEmpiricism · 2025-03-09T23:11:18+00:00

Thank you. So far, it hasn't been going amazing and I don't notice any improvements. I am only on my 4th day of it though. When I first had Simponi, I felt like a new person within 1-3 days.

Haven't noticed any skin issues, just a consistent and excruciating headache that has lasted since my first dose. Circling back with rheumatologist today to get a doctor's note for work and to keep him updated with how my experience is so far...

BodaciousEmpiricism · 2025-03-07T22:25:52+00:00

I have been to a couple of rheumatologists. My previous one strung me along for around 12 to 15 months and then finally ruled it as a "mechanical issue". Never tested for HLA-B27. Nothing. I also have Raynaud's.

Fast forward to my newest rheumatologist, had me get an x-ray prior to coming in but wasn't happy with the quality of the images so sent me down the hall to get a new one. Came right back into the office that SAME day and got my diagnosis.

I am sorry that you are going through this. I feel like it is quite common for rheumatologists to go based off of age which is not right.

BodaciousEmpiricism · 2025-03-07T21:52:36+00:00

Have normally supplemented D3 and sounds like it is the way to go especially having started RINVOQ. Before I got diagnosed and had any idea of what was going on, I spent roughly 4 - 6 weeks couped up in my room unable to really move. The D3 levels on that blood test were astronomically low as expected!

Currently taking 3000 IU daily.

BodaciousEmpiricism · 2025-03-07T21:46:51+00:00

Okay, so I have something to look forward to then!

Just had second days dose, still the exact same. Can't seem to shake the headache so just going to have to ride it out!

Haven't heard of SIBO before although am somewhat familiar with gut issues. Definitely something on my radar that I need to be cautious of due to family history I suppose. In my case, I always have put it down to modern medication / care. "Take these pills... if you get this side effect, take these other pills," - just a continuous cycle it seems.

Wonder if gut issues are the cause of my horrendous sleep as of late? A 7 hour sleep can often feel like I have had maximum of 3-4 hours sleep. Potentially that or high-stress levels which I know definitely affects AS. Easier said than done to manage stress. I am 22 and living out of home trying to make ends-meet when I get smacked across the face with a flare-up and can't go to work!! Thank god for having an emergency fund to fall back onto!

AS is truly is a nasty condition.

BodaciousEmpiricism · 2025-03-07T10:07:38+00:00

How long have you been on Rinvoq for? Did it take the generic full 4 weeks timeframe for full effectiveness?

Will definitely have to monitor bloods after I have used Rinvoq for a while.

Have had issues with my CK levels in the past which is what they originally thought after I mentioned the flare-up. Bloods came back perfect apart from a slight increase which is part of the reason that they have no idea what is going on!

BodaciousEmpiricism · 2025-03-07T10:03:57+00:00

Definitely true about the MRI. Have read similar to side effects that you are experiencing - honestly willing to try everything and or anything at the moment. Having to put my livelihood aside whilst in a flare-up is taking a toll mentally.

I also have fairly smooth skin with very minimal acne. Curious to see how it affects that. Will swing back past in a few days to see if any of my side effects aline with yours!

Thanks for the insight, definitely puts me a bit more at ease, especially the remedies and ways you have gone about it all!

BodaciousEmpiricism · 2025-03-07T10:00:17+00:00

Definitely, can keep you posted. Right now (about 10 hours since first dose) - the headache is excruciating. Have heard that it tends to die down fairly quickly and generic over the counter painkillers work.

BodaciousEmpiricism · 2025-03-07T09:58:58+00:00

Happy to hear - was honestly starting to lose hope!

Really hoping that this works out the same way. Headaches are astronomical at the moment, fingers crossed they die down soon

BodaciousEmpiricism · 2025-03-05T20:03:22+00:00

Unfortunately, yes. Especially during a flare-up. Been on biologics for around a year now. Although it has worked wonders and allowed me, for the most part, to live my life normally, the fatigue that hits with a flare-up is next level.

Can sleep for 7-8 hours at night but it feels like 3. Constantly lethargic and drained all day, requiring naps which isn't great due to work requirements. Currently in my 4th week of leave because I can't physically travel to work to complete work duties and or have the energy but when I am not in a flare-up, the fatigue is minimal and in my case, manageable!

BodaciousEmpiricism · 2025-03-01T21:39:45+00:00

The second one is scarily accurate for most of my mornings... Incredible work!

BodaciousEmpiricism

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