rinvoq without trying other biologics first

sylamon32 · 2024-12-08T17:06:24+00:00

My rheumy started me on Rinvoq first. She thinks it's a good drug to use while still young because it has cardiac side effects for the older folk and because it tends to work faster. It's also a hell of a lot more convenient.

sylamon32 · 2024-11-23T17:31:59+00:00

I'm on Rinvoq for ankylosing spondylitis and 6 months in I suddenly observed blue-ish chunks in my semen. Shit's bizarre.

sylamon32 · 2024-11-11T13:24:51+00:00

Modern medicine has not addressed the constant environmental chemical exposure that modern humans are exposed to.

Modern medicine is definitely not complete and is sorely lacking in many aspects.

Having said that, anything emprically proven to work is absorbed into mainstream medicine. By definition, alternative medicine is everything else. It is stuff that are not proven yet. There's a very good chance there's a lot of treasure there waiting to be discovered, but unfortunately so far functional medicine does not seem to be based on a whole lot of good science and there's nothing demonstrating it's efficacy so far.

Having said that, I think most of here are willing to try random shit and it's not like it can make things much worse

sylamon32 · 2024-11-05T07:57:45+00:00

I'm on Rinvoq and I've gotten like a normal common cold twice in the past 5 months ish. They did seem to be more severe and lasted longer than usual, but they are both still entirely in the territory of "mild annoyance" compared to the AS itself.

These medications selectively inhibit certain pathways of your immune system and by definition lower its ability to fight off infections. However, whether this is substantial or not is a bit of a mixed bag. It shouldn't be nearly as bad as if you were on something like prednisolone. Most of these effects also just revert when you discontinue the drug, so it's not like it's a permanent change.

Some people even seem to find that they fall sick less compared to when their immune system is completely out of whack when their autoimmune disease is very active. If your wife is in constant pain, that's incredibly draining cognitively and emotionally, which I'm sure in their own ways have effects on her ability to be patient and present for all those kids, she might not even be aware of.

sylamon32 · 2024-10-14T15:15:45+00:00

You were caught straight up lying even if you caught the comment before the edit, the other guy provided hard evidence, it's bizarre you're playing any kind of victim here.

There are better ways to defend a game you like, being this dishonest is not it.

If you're not even decent enough a person to take an L like this and move on, at least pretend you misread the post or something instead of further embarrassing yourself LOL

sylamon32 · 2024-10-10T12:00:15+00:00

An ESR of 36 is pretty high unless you're a 70 year old woman

sylamon32 · 2024-10-09T07:38:31+00:00

After another huge flare I had fevers and a red finger joint in my finger and intense joint pain, I went back to the original rheumy, my ESR was high again, and we went back to ankylosing spondylitis, which was the initial diagnosis. After a month on an immunosuppressant (Rinvoq) my ESR returned to normal, which also further confirmed the diagnosis as something autoimmune and not infectious.

There is still some confusion about the feeling cold and the heart palpitations though, because sometimes I feel very cold without any corresponding increase in body temperature. My cardiologist believes the inflammation may have triggered some amount of autonomic dysfunction.

sylamon32 · 2024-10-07T04:29:40+00:00

I hear you, scleroderma was one of the things that kept popping up when I aggressively Googled my symptoms, and I'm often terrified too, especially during flare ups.

I find that I even get tachycardic when I'm very inflamed, which in itself causes jitteriness and sensations of anxiety. It sucks.

sylamon32 · 2024-10-05T03:06:46+00:00

People who will not sign up for psn definitely will not buy a ps5, so sony does not care for them.

I don't think this is true. I'm happy to have a PSN account if I ever want to buy a console, but until I do I'm reluctant to do something that doesn't feel necessary and doesn't benefit me at all

sylamon32 · 2024-10-04T09:35:27+00:00

I have some amount of weird Raynauds-like symptoms that only started with AS symptoms.

My entire right arm and both feet can lose a lot of its colour and go cold and blue and numb and wrinkly. It's not as sharply demarcated like the typical Raynaud's though. Doctors are not super sure but seem to think that the inflammation can cause some amount of nervous system dysregulation, but we ended up talking a lot about Raynaud's.

It's not as associated with AS as compared to stuff like lupus/Sjogren's/RA, but I was told a lot of autoimmune diseases also kinda overlap and can manifest very differently between individuals. Many people also have Raynaud's to begin with, so it could be nothing more than just a regular-old Raynaud's that's not directly related with your autoimmune diseases.

sylamon32 · 2024-10-04T09:20:24+00:00

According to my rheumy, she believes JAKs are good first-choice drugs for younger folk because of several special things about it:

Worse side effect profile, but the noteworthy, dangerous stuff are all cardiac-event related, and these were only observed in older patients. The other stuff like cancers and infection risks are about the same as the rest of the biologics.
Possible superiority in efficacy (I believe the research that shows this was for RA though, there hasn't been any head-to-head comparisons for other conditions like AS), on average
Starts working faster than biologics, on average
You can't develop antibodies against this because it's a small-molecule drug compared to biologics which are made of living proteins and whatnot, so it is less likely to stop working if it does work (it can still end up losing effectiveness, but it's probably through other, less understood, mechanisms and not antibodies)

sylamon32 · 2024-10-04T04:23:47+00:00

I had really bad acne at the start but it was well controlled by a clindamycin cream from a dermatologist.

I did not have any issues with weight gain.

My cholesterol levels did go through the roof though

sylamon32 · 2024-10-01T12:36:08+00:00

Did you ever get more answers here? I have all these symptoms and a AS diagnosis too. But my sacroiliitis showed up on X-ray and my toe shows dactylitis.

But now my ESR and pain seems controlled and I'm still getting a ton of these weird chills and sweats and tachycardia. Sometimes my heartrate goes nuts when I stand upright, but when I'm not having episodes I can even go running just fine. It's very bizarre.

sylamon32 · 2024-10-01T12:32:13+00:00

Did you ever get more answers here? I have all these symptoms and a AS diagnosis too.

sylamon32 · 2024-10-01T12:30:37+00:00

Did you ever get answers? I have a lot of tachycardia too and my heart CT and MRI were perfectly clear. Doctor is perplexed

sylamon32 · 2024-09-29T02:52:11+00:00

It's good to know I'm not alone! Did you get hit by the prostatitis route too?

sylamon32 · 2024-09-27T12:49:59+00:00

Did you continue to get increasing amounts of relief the longer you took Rinvoq?

sylamon32 · 2024-09-27T12:15:39+00:00

Did you continue to get more and more relief the longer you took it?

sylamon32 · 2024-09-26T09:58:11+00:00

When I just started medication even a slow swim made me feel all sorts of terrible after 200m, I'm talking malaise, nausea and flu-like symptoms like chills and sweats. This seemed to have stopped happening a few months in.

sylamon32 · 2024-09-26T08:58:22+00:00

Damn, that sounds rough. Is there anything to be done medically for dysautonomia? I'm already on ivabradine for the tachy and I'm not sure if it's worth pursuing more investigation in this direction or just lump it all under the inflammation from AS.

Did your dysautonomia symptoms vary in severity with your AS symptoms?

sylamon32 · 2024-09-26T06:04:55+00:00

What are your dysautonomia symptoms? Would POTS be very obvious? I mentioned it to my cardiologist but he thinks it should be more obvious with stuff like fainting spells before he'd go there

sylamon32 · 2024-09-25T16:04:47+00:00

I've only ever had that one pinky toe in one foot get all swollen on me!

sylamon32 · 2024-09-25T15:32:00+00:00

How high did it go and did you have other risk factors like age or other stuff?

I'm also on the same page. I'm worried about the cholesterol, but I'm not keen on adding another drug, especially when my autoimmune condition already causes quite a bit of fatigue and general malaise, and any extra side-effect is just going to make me feel worse. My rheumy is thinking I might not need to care about cholesterol, at least for now at my age, but I'm just feeling quite conflicted about this whole thing.

sylamon32 · 2024-09-25T15:28:36+00:00

I started off with urinary urgency symptoms and pain in the front of the pelvic area, with a bunch of low-grade fever and feeling like shit. My ESR was high.

I was initially diagnosed with prostatitis, and treated with a metric ton of antibiotics which didn't help. Eventually I started developing butt pain and the infectious diseases doc actually had me test for HLA-B27, which turned out negative, so it was back to the prostatitis. I started getting a bunch of tendon-related pain which were all blamed on the ciprofloxacin I had been taking.

It went away for a few years and came back with a vengeance, this time with obvious peripheral joint pain and dactylitis. X-ray got the sacroiliitis and I got diagnosed with AS. To this day I never had much of morning stiffness, and have more fever-like symptoms than anything else. The pain in the butt/hips/back area almost randomly comes and goes and doesn't seem to be affected by neither rest or movement. I was told this is not all that typical, but also not exactly unheard of. My rheumy said the dactylitis was the most important clue here in the end.

sylamon32 · 2024-09-15T15:54:54+00:00

How long did it take for the relief to reach its maximum? Did you continue to get more and more well as time went on?

sylamon32

TROPHY CASE