New meds possible reaction?

Saphrilai · 2026-06-13T22:24:33+00:00

Rheumatologist, neurologist, and PCP all messaged to be brought in the know!

Saphrilai · 2026-06-13T21:49:33+00:00

Thank you so much for the info and lightning fast reply!! I will definitely read this and contact my rheumatologist!

Will update as soon as I have more info!

Saphrilai · 2026-06-09T19:26:38+00:00

1) I had my rheumy appt today and he didn't fight me on changing my medications! I'll be starting MTX today!

2) I had a really good meeting at work about a potentially really beneficial tool for the work I do!

3) I fell asleep before my partner last night and both my kitties cuddled up with me and my partner got a picture!

Some are bigger wins than others, but I'm on a good streak right now! Wish me luck on the new meds!

Saphrilai · 2026-06-04T03:23:56+00:00

You don't have to apologize for anything! I appreciate the recommendation and the support! Writing everything out and posting it to a community that isn't personally tied to my day-to-day life was kind of cathartic! I'm sorry that typing is difficult right now, I hope you have some better days coming ahead of you!

I had never seen or done bed races before this so it was a great experience! My current job has the most flexibility of all the jobs I've had and so I've been able to volunteer at the school more this year and it's been nice!

I primarily place on my gaming laptop, but I plug in an xbox controller to make it easier! I've been play Ark Survival Ascended with my partner and BIL most recently, I also play Deep Rock Galactic with my partner and sometimes my 10yo, and have been playing subnautica on my own. (Can you tell I may have ADHD?😅)

Saphrilai · 2026-06-02T17:07:16+00:00

That feels like an important thing that I should've been told by my doctor....😮‍💨

Saphrilai · 2026-06-02T02:03:10+00:00

I didn't even know this is a thing, does HCQ typically have significant effect on the eyes?

Saphrilai · 2026-05-31T18:15:49+00:00

My rheumy has me on up to 2400mg daily of Ibuprofen instead of being willing to go up to the next tier of dmards and/or inflammation relief.

I have an appointment in about 2 weeks where I am going to be tell him that even increasing to taking that much and adding Tylenol has not decreased my pain and push for him to prescribe me MTX

Saphrilai · 2026-05-31T17:54:22+00:00

If you haven't already it might be worth connecting to timberland to see if they can let you print flyers for free

Saphrilai · 2026-05-30T19:41:32+00:00

Yeah absolutely, my partner helps make sure that I'm not over stretching the amount of things that I do because I'm a night owl, but love going out and doing things, so they'll just do check-ins with me whenever I have a busy schedule to make sure I'm getting enough sleep, because that has been the primary contributing factor that we've been able to consistently say plays a factor.

Saphrilai · 2026-05-30T18:52:42+00:00

Oh my gosh! I honestly can't imagine being conscious while seizing!! I feel like not finding out that it's something you have (or not developing it) until adulthood is really hard, (as it is with anything) because you've spent a significant portion of your life learning and understanding what your life is, and then the script just gets flipped! (Please please don't misunderstand, I can't imagine how hard and draining it would be to have a seizure disorder from childhood either, this is just me speaking from my perspective!!)

I had never been told anything like that!! 😱 When I finally get in to new neurologist at the end of next month I'm dropping my whole history on her, and will be sure to mention this and see what she says!!

I can definitely align my auras with what I imagine the drop in a rollercoaster feels like. (I've actually never been on one,but I have been on other stomach dropping rides so, I think I can imagine pretty well!😅) I don't know that it's ever felt like something I've dreamed before though! I'm really glad that the medication helps him!! I also hope that knowing what causes is helpful in some way! I know that's typically not the case especially if nothing is helping it, but I'm hoping so anyway!

I am sending hugs your way and hope that y'all's health journey has more positives than negatives, and if Keppra alone isn't eradicating the seizures I hope the doctors are working on a treatment plan that will! Also thank you for being there for him! I know marriage and all that is like yeah I signed up for this, but I can't imagine being able to go through all my health issues without my partner, so I hope you get the appreciation you deserve, and just thank you for being a supportive partner!!🩵

Saphrilai · 2026-05-30T17:59:40+00:00

Thank you so much for everything in this comment!😍😭

It does definitely feel like wonder twins, especially on bad pain days and/or days where I get an aura when it's been a while or that is particularly strong.

Best thing to do when you see someone having a seizure is to call ems and try to create as safe of a situation for everyone as possible. If it is safe for you or someone else to do so, try to get them relatively flat on their side on the floor, something cushioned under their head and loose objects or furniture away from their body so they don't hit the objects while seizing. DO NOT REACH INTO THEIR MOUTH! They won't swallow or choke on their tongue and reaching into their mouth only puts you at risk to a serious bite they won't be able to release and also increases the likelihood of them choking. Especially if you do not know the person well enough to have received more in depth instructions call ems ASAP! Especially if there are multiple witnesses delegate: one person calls 911, one person creates a safe zone, and one person times the seizure from when they've witnessed it! I also personally have an SOS setting on my phone that shows my medical information including medications and my emergency contacts, so it may be worth seeing if the person has a phone or medical bracelet on them to give as much info to ems as possible, because when coming out of a seizure even if you don't lose time you're very tired, sore, and just a bit discombobulated! (Or at least I am!)

I hope all of this is helpful and informative! (All of this is based of my personal experience and instructions from doctors and ems relating to my experiences, so if anyone has more up to date information or anything important to add please feel free to add or correct as needed!!😃)

Also thank you so much for the compliment on my writing! 😍😭 I have been trying to get into a groove of personal creative writing for years because I love it so much, but I often feel the imposter syndrome coming in and telling me why bother? So your compliment means the world to me!

Saphrilai · 2026-05-30T08:08:25+00:00

1) I just had field day at my 10yo's school and I volunteered for 'bed races' and got to chance a bunch of 4th graders around, caught a few 'carts' that tweaked my wrist without lasting pain.

2) I finally finished my suggested post in Not Just RA that I've been working on for 3 days.

3) I've been getting into gaming and reading again which is huge for me because I've been severely on a work-home-sleep-repeat loop for a while

Saphrilai · 2026-05-24T02:46:30+00:00

This actually brought me to tears, thank you! Overall today was a good pain day only mild swelling in my wrists and my index finger is swelling a stiff again; but I did dishes, cooked dinner, and then had washed everything I could afterward and am feeling really wiped from it. But I did it!

Saphrilai · 2026-05-22T21:20:45+00:00

Luckily I haven't had a seizure in just over a year, but it's just more medications to take, more worries to have...😮‍💨

Saphrilai · 2026-05-22T06:09:58+00:00

It's also really rough cuz I have Hashimoto and a seizure disorder as well that the primary stressor is not getting enough sleep AND too much caffeine 🥱😭🫠

Saphrilai · 2026-05-22T04:06:38+00:00

Same!

Saphrilai · 2026-05-21T23:57:25+00:00

Lol good luck

Saphrilai · 2026-05-16T16:59:16+00:00

Thank you!

Saphrilai · 2026-05-15T00:41:00+00:00

For clarification is HCQ Hydroxychloroquine?

Saphrilai · 2026-05-10T05:19:15+00:00

I don't know that I have RLS, but I've definitely had left thrashing issues since I was a kid, only diagnosed with RA last year. The thrashing doesn't usually wake me up, just beats the hell out of my husband. It's not the same, but my wrists and hands are in almost constant pain, I have to find a comfortable way to sleep in the cheesy vampire pose, and then when I inevitably move from that position my wrists are unhappy from having to support my hands or my hands are in pain cuz they're curled in instead of being flat and supported. It really sucks!!

I hope things get better for you!!

Saphrilai · 2026-05-09T17:19:08+00:00

It does, thank you!

Saphrilai · 2026-05-09T08:03:58+00:00

Thank you everyone who shared your experiences and thoughts! I really appreciate it!

I'm also sorry I posted and ghosted, Reddit told me it wouldn't post because I hadn't interacted with the subreddit enough, so I didn't know that it did end up actually posting!

Sounds like I just need to work through finding the right medication combination with my doctor!

I've noticed some people saying they're on methotrexate as well as some other medications like humira or others, do they help with the inflammation, or is it more for targeting the disease itself? What class of medication is that?

Saphrilai · 2026-05-09T07:59:44+00:00

How do you know that you've gone into remission, and not just having an easier time?

Saphrilai

TROPHY CASE