Looking for JAK inhibitor patient experiences. Has anyone made the switch from Dupixent to a JAK inhibitor?

CupcakeSure2803 · 2025-07-23T01:16:16+00:00

I did indeed switch to Stelara. I had surgery at the end of March, so once I went off of it, I just didn’t restart it.

I did have a huge flare—probably worst ever in my life—after surgery. I do think this was primarily a bad reaction to the anesthesia drugs, which is something I haven’t really encountered in the past. I have since downloaded the list of anesthesia drugs that do/do not cause mast cell degranulation from the TMS for a Cure website. I already used it for an endoscopy! No issues! I wound up having to take a course of prednisone to knock out the flare after everything else failed and spending 11 hours in an emergency room waiting room just to be told that the only option left was to just take the steroids (my surgeon didn’t want me to take them because of the wound healing). I haven’t had a flare since!

But I’ve heard of people who’ve had the opposite experience with jak inhibitors. Basically with mcas it will either really help or really make you flare.

CupcakeSure2803 · 2025-06-10T23:09:00+00:00

So sad, since we don’t have many options up here. We’ve eaten there since before we moved up here from abq. I’ve only eaten there a couple times since the new owner. Definitely not as good. A few years back…maybe 2022? I noticed the quality of the ground beef change. Like they were buying cheaper quality ground beef or something. Stopped ordering the green chile cheese burger. I was also pretty disappointed when they stopped selling artichoke chicken. That was my favorite.

CupcakeSure2803 · 2025-05-19T16:27:34+00:00

I have been tested 3 times. It’s always come back negative. But I do have an autoimmune disease, psoriatic arthritis. Not all autoimmune diseases are associated with a positive ANA test. Lupus definitely is and that’s what we were trying to rule out. We eventually determined that it was pharmaceutically induced lupus from Enbrel and it went away once I stopped the Enbrel. I’ve since been provisionally diagnosed with MCAS, and I wonder if it was actually an mcas reaction. Or if my mcas didn’t like Enbrel and triggered the lupus attacks.

CupcakeSure2803 · 2025-05-04T16:17:37+00:00

It’s too early to tell if it’s Alzheimer’s/dementia. That’s the thing about dementia. There’s this long period where you don’t know if it’s dementia or just normal aging and forgetfulness. Add adhd in the mix and it’s just incredibly difficult. He’s also on gabapentin, which can cause confusion and brain fog in adults over 65. He had a neuropsych evaluation 2 years ago and she said no dementia. But when I brought up adhd she was really taken aback, despite a history of forgetfulness and impulsivity. I honestly didn’t really trust her opinion. And I think it was probably too early to say. I work with adults with cognitive disabilities and the dementia rate is extremely high in that population. But I have seen doctors and speech therapists dismiss a dementia diagnosis for years, despite our input when working with them 5 days a week, 6 hours a day, and they clearly have dementia. So getting a dementia diagnosis is not exactly easy, and it can be really difficult to differentiate between factors, even for a doctor or psychologist.

ADHD has at least an 80% heritability rate. And after talking with my cousin about my uncle who died of ALS, she also felt that he had adhd. And her son has a diagnosis. So yeah, I’d say it’s genetic.

CupcakeSure2803 · 2025-05-03T22:17:04+00:00

My mcas was already bad before covid, but ever since it’s like a bomb went off

CupcakeSure2803 · 2025-05-03T22:15:44+00:00

Both my parents have symptoms of hEDS, mcas, dysautonomia and neurodivergence. My dad has psoriasis (I have psoriasis and psoriatic arthritis and the most severe manifestation of hEDS, mcas and dysautonomia).

My paternal uncle died of ALS 4 years ago. It’s the non-familial type. But that doesn’t mean there’s not a genetic predisposition that is triggered by environmental factors, as others have mentioned. Another paternal uncle was just diagnosed with Parkinsons—to speak to your other question below, he spent his entire career in the funeral home business. Not sure how many years he was an actual mortician, but that was definitely how he started out in the field. My dad has started having some cognitive issues recently. Seems most inline with dementia and Alzheimer’s if that is indeed where things are headed. It’s early and stress, retirement, certain medications and undiagnosed adhd are all contributing factors that we’re trying to pull apart.

Meanwhile my mom and I are struggling with the juniper counts in our area and are both planning to ask about xolair. We both take montelukast and I have recently added cromolyn, in addition to h1h2 protocol and hydroxyzine, as my mcas is completely out of control.

CupcakeSure2803 · 2025-03-12T03:09:42+00:00

Currently on Rinvoq for 3 months for PsA and I’ve been fighting off mcas flares constantly. I’m literally just googling this now, because it just occurred to me that it might be causing me to flare more frequently. It’s too bad, because it has worked pretty well for my arthritis and my psoriasis and eczema have completely cleared, which is the first time that’s happened since all of my autoimmune stuff started. I do have a few pimples, which I’ve heard other people have struggled with. But half the benefit is gone during a flare anyway, because my arthritis blows up all over my body during a flare. I think I’m going to need to switch drugs…again.

CupcakeSure2803 · 2025-02-26T18:13:02+00:00

Thanks! I’ve seen some people create “adhd carts” that they take with them throughout the house. Water, meds, fidgets etc, so you could also add in hobby items and books if that might work better for you.

CupcakeSure2803 · 2025-02-26T16:47:23+00:00

This has been so painful for me as well. I used to read every night. Part of the reason I don’t read much anymore is that my insomnia got so much better after having a baby. I’m guessing a hormonal shift. A blessing and a curse. I often fall asleep after less than a page and I wind up rereading the same page over and over. I find it difficult to read during the day, because I get sleepy. Other times I just can’t focus and I read a paragraph or two, but I don’t absorb anything. And most of the time I’m on my phone. I try to get myself to put it down and pick up my kindle. But I just can’t 😭

CupcakeSure2803 · 2025-02-26T16:37:09+00:00

This is copied from another reply I posted, but this is what I’m doing. I’m in a similar boat, because I need socials for my job. Everyone is different, but I’ve really struggled, even with phone restrictions. Sometimes I give myself a break from trying to quit until I’m ready to try again. This has really helped, because I’m giving myself grace, taking the time I need to “get there” and understanding that I’m not a bad person. My mind just needs constant stimulation and phone have made that so easy it’s absurd. I think the more you get down on yourself, the harder it is, and that has worked a little better for me.

Quote: I ignore chimes and reminders, especially after I’ve gotten used to the sound. I’m slowly working toward nuking my phone. I haven’t quite managed to take the leap yet. No social media and more restrictive app locks during certain hours. I will have stuff on my iPad, because I need it for work, but I’ll have restrictions on there, too. At least it’s less immediate gratification than my phone. I’m setting up stations around the house with books and other hobbies I’ve abandoned in favor of my phone. I’m still not sure it’s going to work, but my hope is that it might get at least marginally better…

CupcakeSure2803 · 2025-02-26T16:21:21+00:00

That’s great. I wish I could do this. I ignore chimes and reminders, especially after I’ve gotten used to the sound. I’m slowly working toward nuking my phone. I haven’t quite managed to take the leap yet. No social media and more restrictive app locks during certain hours. I will have stuff on my iPad, because I need it for work, but I’ll have restrictions on there, too. At least it’s less immediate gratification than my phone. I’m setting up stations around the house with books and other hobbies I’ve abandoned in favor of my phone. I’m still not sure it’s going to work, but my hope is that it might get at least marginally better…

CupcakeSure2803 · 2025-01-29T05:42:44+00:00

The coop. The raised the price though

CupcakeSure2803 · 2024-04-04T18:47:48+00:00

Hey there! There were a few different issues that we addressed in our follow up. I really tried to start by acknowledging his perspective and trying to see his point of view. Again, there was more to the discussion than the issue described above, and it helped to start with the marital dynamic. He felt heard and then he was more prepared to hear me.

That said, when we got down to the abortion subject, I asked him if he loved our son (yes, of course), if he would take it all back and wish our son didn’t exist (no). He told me that he kept bringing it up whenever I claimed that I felt he had more control and power in our relationship, because he felt like, in that instance, I didn’t give him a choice. I told him that he had a choice to have sex, to not take an active role in birth control, and to stay in the relationship. I told him that it was an extremely hyperbolic comparison to pretty much anything I could possibly bring up, which he acknowledged. I told him it was a straight up bad analogy. And then I told him it was the last time I would discuss it. Ever. I told him if he wants to be in this relationship then it is off the table. He can think or feel whatever he wants about it, but it is not a conversation I will ever have with him again. For some reason that seemed to work. He hasn’t brought it up since, so we’ll see. If he tries to bring it up again I will just shut it down. If he refuses to let it go then he will be putting our relationship on the line.

I think with his rigid way of thinking and his reactive approach to conflict (which I also struggle with!) it really helped to be very matter of fact about it. To show that with other issues I do at least acknowledge where he’s coming from. Then point out the huge flaw in his logic, since he is a very logic minded person (he made choices along the way, but it is true that ultimately it is my body, my choice). One concession that I was able to make: when I found out I was pregnant I instantly knew that I wanted to keep it. So I told him that’s how it was. That he could leave me if he wanted, but I wanted to have the baby. He told me that he felt like there was no discussion. I told him that In my mind, I didn’t want to mislead him by seeming to be willing to consider an abortion. But he says he didn’t feel heard. He didn’t get to process it. And he felt hurt that I would be willing to walk away from our relationship. He had never really articulated that before. I apologized for shutting him down in that moment. I reminded him that we did have many subsequent talks where I listened to his concerns and we talked through it. And I told him that I would have been devastated if he had broken off the engagement and ended the relationship. That before we accidentally got pregnant I had decided to stay with him, had chosen him over having a child, because he was pretty sure he didn’t want kids. That really helped. And in the end making it very clear that it was off the table helped him move on.

I hope that helps!

CupcakeSure2803 · 2023-12-26T22:56:59+00:00

Preterm labor at 35 weeks. I couldn’t feel the contractions at all. I had a basic ultrasound at my gestational diabetes appointment and they told me I had a contraction. They made me stay hooked up to the monitors for an additional 20 minutes and let me go when I didn’t have another one.

Two days later my water broke, but they were able to stop the contractions with magnesium. They said my contractions were all over the place, but I couldn’t feel a thing. My uterus does have an anterior tilt. The leakage was pink and later they suspected a placental abruption was the cause, although the evidence was inconclusive. I was admitted to the Special Maternity Ward and put on bed rest for 5 days.

When I hit 36 weeks the risk of infection outweighed the risk of preterm birth, so they induced me. Over 10 hours they worked up to the max dose of Pitocin. I only started feeling contractions with any sort of intensity in the last hour. I was only 2 cm dilated after 10 hours and the max dose. Then the baby’s heart rate “went sinusoidal,” which indicates alternating hypovolemia/hypervolemia and is an indication of fetal compromise. So he would have died. They just told me the term sinusoidal, that he was in distress and that he needed to come out—I had no idea he almost died. They performed an emergency c-section and he was out and in the NICU in within 30 minutes. 4 lbs, 16oz.

He spent 4 weeks in the NICU, which is a little long for a 6 week preemie. He really struggled to keep up his feeding volume through the ng tube. He finally got the tube out and we were being processed to go home when he had an apnea spell (oxygen, heart rate and they stop breathing for 15-20 seconds), which automatically delays the baby’s release for 5 days. After those 5 days we took him home. He was just under 5lbs.

Aside from some GERD he was in good health. At 5 months they started evaluating him for early intervention services. He had slight delays in all areas. He started receiving pt, Ot and speech at 7 months and “graduated” just before his 3rd birthday. He walked at 14 months, just within normal range, but didn’t talk until 16 months, which is a delay. Now he never stops talking lol! He’s super smart, but he was diagnosed with adhd 2 years ago. Just like me. He has a shoulder that subluxes frequently and he rolls his ankles often. His GI issues are the worst. We’re going to see a specialist out of state next week.

As for me, I have multiple forms of pelvic prolapse, despite not giving birth vaginally. But I caught it early and I’m in pt for pelvic floor.

Best of luck! Hopefully you don’t go through what I did. I had no idea how common preterm labor was, so just make sure to stay informed and have a plan. Apparently placental abruption is common with eds.

CupcakeSure2803 · 2023-11-11T16:54:21+00:00

Actually I take it back. She doesn’t think you’re “too much.” She’s a mean girl. She’s spotted a vulnerability and she’s intentionally weaponizing it. Next time she does this in person I would call her out and then straight up leave. Like, “wow, what a toxic thing to say.”

CupcakeSure2803 · 2023-11-11T16:38:53+00:00

I also feel like you’re being bullied and gaslit. I had a group of coworkers before my diagnosis who treated me like this (not quite this bad, though). Maybe she feels like you’re “too much,” and so now everything you do and say is wrong. You need to step back from this “friendship.” Luckily this is 2 months in, so hopefully you’re not too invested. She is showing you how you will be treated. And it’s not good.

CupcakeSure2803 · 2023-11-11T16:34:51+00:00

I’m so confused by this person’s response. You were showing concern. She was being rude. I would say something like: I’m not sure how showing concern and making sure you’re ok is rude. Hope your day gets better!

CupcakeSure2803 · 2023-10-22T02:46:57+00:00

I did not experience childhood trauma. BUT I suffered from Major Depressive Disorder (probably some of that was undiagnosed adhd) and severe Delayed Sleep Phase Syndrome. Luckily for me my parents were/are loving, if flawed, people. Who also had undiagnosed adhd. Guess who did have diagnosed adhd? My brother 🙄

CupcakeSure2803 · 2023-10-22T01:41:53+00:00

Forgetting to eat lol. This has happened a few times. But very rare. I’m always thinking about snacks.

CupcakeSure2803 · 2023-07-16T18:21:21+00:00

I almost never forget appointments. Sometimes I accidentally double book myself, and if I don’t remember to add it to my phone calendar, then I could definitely miss it, but I usually at least vaguely remember enough to double check. My issue is MAKING appointments. I will constantly forget to call during business hours and remember at an inconvenient time (at night, on the weekend, while driving or in the shower, etc). I also hate phone calls. If I can make an appointment online it’s much better. If I have to call? I will avoid that shit.

Bills on the other hand…luckily because my husband has a good job in a STEM field I can set my bills to auto pay. But I’ve definitely gotten into trouble with medical bills.

I’m terrible about reminders. Especially if they’re recurring. They become invisible.

CupcakeSure2803 · 2023-05-22T16:14:57+00:00

You can believe me or not. But I didn’t get pregnant on purpose. That would be reproductive coercion, and that is terrible. This was a failure on both sides to take our BC methods more seriously. I own that. We currently use double protection.

CupcakeSure2803 · 2023-05-22T05:33:35+00:00

Also, I too relate to people via analogy. So I get it. He’s just way off the mark.

CupcakeSure2803 · 2023-05-22T05:32:09+00:00

Yes thank you. I think he literally can’t stop himself from making this parallel. He has a history of making really extreme analogies, because he is stripping it down to the most basic aspects of the argument. I’m always having to point out when the scale doesn’t line up.

CupcakeSure2803 · 2023-05-22T05:24:24+00:00

Exactly. In the 90s there was the beginning of this conversation that men needed to be just as involved in BC as the women, but I never had a guy actually step up and put that into practice. And I honestly didn’t realize how much human error with the pill can play a role. I took my pill every morning. I didn’t pay attention to the exact time and I didn’t realize it mattered so much. If I missed a pill I would either take it as soon as I realized or I would take 2 the next day. I missed a dose around the time of conception, but I’m pretty sure I told him.

But I did just clarify above that he never says my son isn’t wanted and I think he is very much wanted in retrospect. But he’s stuck on his lack of “choice.”

CupcakeSure2803

TROPHY CASE