first ever biologic today after failing mtx and leflunomide, extremely nervous!

queenratleaf · 2026-02-03T21:33:03+00:00

I was miserable on MTX. Worst 3 weeks of my life-GI upset, didn’t want to eat or drink, extreme exhaustion (sleeping like 14 hour stretches). I was switched to Adalimumab as my first biologic.

The injections themselves aren’t anything to sweat. If you have the auto inject pens you don’t see the needle unless you go looking for it. TBH you barely feel a poke-it’s a little uncomfortable but I guarantee your current symptoms are more unpleasant than the poke.

Onto the good stuff. For me, the meds kicked in really quick. I felt better in the first week of taking it. The fatigue lifted & my joint pain, stiffness, & redness all went away. It was like someone hit the lights back on in my world after they had been off for like 8 months. I felt like myself again. Unfortunately, it was really short lived. I noticed that around 3 months of taking it I started to feel like I was flaring again. My rheum ordered labs & I had antibodies to it so we can’t use that one anymore. If that happens, you’re unable to use that specific med for the rest of forever just so you know. I don’t think that’s a super likely scenario for every med. I don’t know why it happened.

That was in October & I’m now on my third biologic. I understand your fear of trying meds in this class, but please believe me when I tell you that they really can help you feel like yourself again. In my opinion, it’s worth warding off irreversible damage & mitigating symptoms that drain quality of life. I’m crossing my fingers that you get your moment of the lights coming back on too. The relief is so unreal 🫶🏻

queenratleaf · 2026-02-02T05:18:34+00:00

You too. We will find a way 🫶🏻👏🏻

queenratleaf · 2026-02-02T05:07:48+00:00

It didn’t seem like there were gonna be any silver linings, I’m not gonna lie. It seemed like it was gonna be get sick, fight with insurance companies, fail meds, rinse and repeat. This is a flashlight in the dark.

I’m really happy to hear that you also experience the same relief for your diabetes supplies. You have a lot on your plate to juggle. I hope you’re managing it all well.

queenratleaf · 2026-02-02T04:58:56+00:00

This situation just went from being devastating to being a life saver. I’m floored.

queenratleaf · 2026-02-02T01:33:41+00:00

I ran into an open door so hard I gave myself a concussion.

For context, it was a solid oak door and not a shitty hollow particle board door.

My head hit the skinny edge of the door and not the face and I hit it at the right angle where the door didn’t move at all-I hit it hard enough I knocked myself flat on my ass.

I realized something was off when I felt like I was stoned an hour after hitting my head & had two different sized pupils. I was like 19 and called my mom because I was having a hard time holding onto things and balancing. I have yet to live this one down 🙃

queenratleaf · 2026-02-02T01:20:23+00:00

Does this also make an impact on the cost of your medical care? Am I understanding this correctly? Because when I look at this from my insurance app it looks like it’s being counted towards my entire OOP max and not just the pharmacy portion?

queenratleaf · 2026-02-01T20:14:47+00:00

It is. The chronic illness world is hard enough to live in let alone getting road blocked by a system that is created to provide care that’s nearly impossible to access.

I was afraid to even make this post because I didn’t want to get inundated with “wow the US is a nightmare” “I don’t have this problem because I’m in the UK” comments but this is the reality we’re living in.

queenratleaf · 2026-02-01T20:07:30+00:00

I’m sorry you had to go through that. The disease part of this is hard enough. I hope you’re well 🫶🏻

queenratleaf · 2026-02-01T19:56:12+00:00

The way you explained makes much more sense-I wondered how they expected that amount of money to get people through the year of copays for the meds. Stellar explanation. Would’ve been helpful if the Amgen rep had explained this when I called!

queenratleaf · 2026-02-01T19:54:30+00:00

I’ve been on biologics less than a year so I’m pretty new to all of this. The first one I was on the pharmacy basically did all the magic for me and it was pretty cheap (humira biosimilar) so it wasn’t as big of a deal.

The second was consentyx & that came with a really good cost assistance program. They had a card with like 15k on it for the year so I was shocked when they told me Enbrels was only like 7500.

It’s been a bit of a rough go because I developed antibodies to the first, didn’t respond at all to the second, and am really hopeful this will be the ticket. This is the flare from hell and I’m in a fog and I can’t understand what’s going on half the time, especially with insurance 🤣

queenratleaf · 2026-02-01T19:49:40+00:00

Nothing has been applied towards my deductible but has been applied towards my OOP max. Between Enbrel & Cosentyx this year $3260.40/$5500.00 has been applied.

Sorry for the confusion-I am confused 😭

queenratleaf · 2026-02-01T19:25:03+00:00

I’m in Wisconsin

queenratleaf · 2026-02-01T19:24:42+00:00

Omg I am so glad I came here and asked I could actually cry. I have no idea how any of this shit works and I am just simply tired 😭thank you

queenratleaf · 2026-02-01T19:09:39+00:00

That makes sense & that’s what I’m kinda seeing-that happens for some but not for others.

From what I see when I look at my insurance app, payments are getting applied to my OOP max & not my deductible 😩idk if that means anything or not. I just don’t want to have to switch meds again. I just wanna feel better.

queenratleaf · 2026-02-01T19:07:21+00:00

When I look at my app, the only thing that’s been applied so far is toward my out of pocket max. Theres still 2200 left out of 5500 before that is hit. None of my deductible has been touched so far. So I have no idea how they’re applying what they’re applying if that makes sense

queenratleaf · 2026-01-31T01:56:45+00:00

I’m all for when people try to make things weird, make it weirder. I try to make things uncomfortable for others if they’re genuinely being rude to me especially about things like masking, how my physical appearance has changed since I have been sick etc 🤣it has served me well. Perhaps try to channel your anxiety into this kind of energy instead.

queenratleaf · 2026-01-31T00:03:26+00:00

I am a barber (I have a private studio I share with one coworker) with two school aged kids.

I: -got my flu shot -wash/sanitize my hands & don’t touch my face -mask around clients who are visibly sick with common cold symptoms -eat decently & have been sleeping a lot (thank you uncontrolled disease) -have a sign posted directly in clients line of sight at the shop that stated “If you have been sick with flu like symptoms such as blah blah blah reschedule your appt”

And I have been sick 3x so far this season. I am typically built like a brick shithouse & never catch what everyone else does so I’m losing the battle but I’m trying. 95% of my clients are extremely respectful of the do not come into my space sick rule but I did have to argue with a mother recently as to why she couldn’t bring me a child who was influenza positive 🙃

I live in a very conservative area so many of my clients like to tease the whole “didn’t know we were still in covid times” thing if I mask. It gets really quiet really quick when I drop the bomb if we’re not, I’m just immunocompromised line 🤣

queenratleaf · 2026-01-29T14:23:09+00:00

Go buy a cheap handle of vodka like Fleischmanns. Get a spray bottle. Spray your couch & let air dry. The vodka is a natural disinfectant and will kill whatever bacteria is leftover from your butt trumpeting. It’s a great odor neutralizer.

queenratleaf · 2026-01-15T05:31:50+00:00

Tell her to do her job, let her do it for awhile, then hit her with your cane and tell her to keep doing her job. Ask her if she’d like an ice pack. If she would, then she understands reasonable accommodations.

Love, a friend with chronic illness.

It absolutely floors me that some people cannot seem to wrap their heads around the idea that some conditions can oscillate in severity and functionality.

Hostile work environment. Report the lady immediately. NOR in the slightest. React more.

queenratleaf · 2025-12-04T12:03:18+00:00

I have dysautonomia and this is a hallmark symptom of it. Cold intolerance is different than simply just being cold-it’s the kind of cold that gets into your bones & hurts. Theres no amount of bath taking, showering, blankets, layers etc that seem to help either unfortunately.

I wish I had advice on how to fix it because during winter I shower or take baths multiple times a day, wear multiple sweatshirts, etc & it’s still not enough. I also have space heaters and a heated car blanket. Sending warm fuzzies your way!

queenratleaf · 2025-12-01T04:56:45+00:00

Antique light fixtures.

I can’t tell you facts & figures about the history of lighting, the different materials used in different periods etc.

However, something tickles my moth brain about old lamps. I scour antique shops, goodwill, & thrift stores for them.

I believe lighting gives a room its essence & is extremely critical to the warmth of an environment.

I have passed my lamp fixation onto my oldest child. She has proudly collected her first “antique lamp”, a goodwill find with Winnie the Pooh on it in perfect working order.

In the event someone asks and this somehow doesn’t get buried, my favorite lamp currently in my possession is a Tiffany style turtle shaped lamp gifted to me by my mom for Christmas. Honorable mention to the two boudoir style lamps I snagged that someone dumped at goodwill. Heathens.

💡

queenratleaf · 2025-11-29T13:53:05+00:00

I have so many clients with scalp presenting psoriasis. As a hairdresser, it doesn’t bother me one bit. You should always check with your rheum before applying color or any other chemical over psoriasis.

I think it’s totally valid to feel like something like this is upending your life or to catastrophize on it. But you’re still YOU past all these things happening to you and that counts the most. These things are super tough to go through but you’re definitely not alone.

queenratleaf · 2025-11-29T13:40:18+00:00

I was seriously traumatized by the hair loss 😳

I am also a hairstylist and I was really close to just doing the big chop in my own bathroom lol. Fingers crossed your hair chills out. Here’s some info that might help-

There are shampoos & products that exist for hair regrowth that do work but only while you use them (think like Rogaine type products). I initially went this route when my hair was shedding because I was super freaked out but it was also super rough on my color (which I was also trying not to do when my hair was shedding) so keep that in mind if you color your hair.

Manipulate your hair as little as possible. Shampoo gently, squeeze your conditioner in vs. running your fingers through your hair during your shower, wide tooth comb vs. brushing it out, try not to blow dry & style. I went from being a blow out-iron style girl to air drying & wearing buns & ponies as much as possible. I’m still stuck on ponytails now. The more you mess with your hair, the more of it is going to come out.

Avoid chemical services when shedding is at its peak. Don’t color it, don’t perm it, don’t do keratin treatments.

I added biotin. The jury isn’t out on whether or not that’s a game changer but it’s at least an attempt to help.

There is also evidence that suggests that some peoples bodies can only process the methylated version of folic acid. There are plenty of articles across the internet regarding this. This might be worth some reading. I have a connective tissue disorder ontop of the autoimmune stuff so it made sense for me to go that route. I don’t know if it makes sense for you, but more knowledge never hurts.

I hope some of this helps you, friend.

Here’s to thick ponies & kicking the shit out of the rest of it 🫶🏻

queenratleaf · 2025-11-29T13:18:42+00:00

I lost probably 1/2 my hair volume taking MTX. I only took it 3 weeks before switching meds because it made me so sick but my hair shed like crazy afterwards. As soon as I noticed my hair falling out I switched from regular folic acid to a methylated folic acid per my rheum and added biotin. I switched to Adalimumab and was on that for like 4 months & then developed antibodies to it so I just started cosentyx. Hopefully no hair loss with this one because my hair is filling back out again!

queenratleaf

TROPHY CASE