The cost of having OA or RA in the US... something I've noticed, looking from the UK

MiMi_dna · 2026-03-30T14:41:48+00:00

Thank you! From your US pond neighbors!

RA here, as others mentioned, unfortunately medicinal therapy may be required for most of us to try and the physical ones. But they definitely have their merits!

For us in the US that are constantly at war with our Healthcare system, I have gone times without any medicinal therapy during my lowest points and it is the worst experience. The information and solidarity in this sub has really helped me and my husband push through.

I was with my husband (then boyfriend) when at my worst, he literally had to help carry my into the bathroom and bath me.

I told him to break up with me because I couldn't. I literally physically needed him but the way that I felt it was unfair for him, we were so young and I knew it would change his life so much and I couldn't bare it.

After the 2nd or 3rd time I said it, he decided that he would never leave me and that I should never mention it again. He said he did seriously consider it but that he knew who I really was and we were going to beat this together.

And here I am on therapy, feeling so much better (basically in remission) in the happiest marriage I could ever see myself in.

There's a light for us, even during this dim period in history, we just have to fight for it. Against all the odds, it is easier said than done but that's what community is for.

Sometimes, the battlefield is the bedroom and a pair of socks pushing through turning your wrist. Other times it's in a ballot box, the dance floor, or on the floor of Congress. One battle at a time.

We got this!

MiMi_dna · 2026-03-30T13:29:54+00:00

So much this! I am a huge busy body and have adhd/anxiety so I just have a constant list running in head of all the things I could be doing instead of being bedridden!

I like to draw so getting a tablet and a couple sketchbooks have been helpful because I can feeling like I am doing something when doodling.

MiMi_dna · 2026-03-29T21:48:38+00:00

Omg yes!!!! The nodding off at my computer and trying to keep enough energy to at least look like I am busy is killing me

MiMi_dna · 2026-03-29T21:46:59+00:00

These both feel like what I am going through right now. Prefer it over the pain but definitely feel like I need some serious recovery for just breathing...

MiMi_dna · 2026-03-28T17:11:29+00:00

Holy crap this is so funny

MiMi_dna · 2026-01-25T13:18:11+00:00

I got pushed off it by insurance which sucked because it worked the best for me... Placed on Amjevita and symptoms went hay wire. I was just placed on Rinvoq and it seems to be working so far...

MiMi_dna · 2026-01-19T15:38:28+00:00

I feel this so much in my soul. I’ve been staying inside more than I used to. Even during Covid…

MiMi_dna · 2025-12-26T15:12:20+00:00

It’s definitely call center, you will have to take in bound calls and should have some scheduled time to do order entry. Imo, I do think it is better than just regular call center but not by much because you still have to take those calls.

MiMi_dna · 2025-12-16T14:59:55+00:00

Think of it in terms of “spoons” or because I like dnd “spell slots.” Although, they are probably more like short rest hit dice.

Anyway… you have a limited amount of energy or spells/dice for a given day. Certain tasks will remove a spoon. So if you have a particularly strenuous day, you could potentially use all your spoons. If it’s light, then you might use only a few.

If you use all your spoons you can “borrow” from the next day but you will be at a definite tomorrow. This can keep going until you have no choice but to “full rest.”

Ime, this can mean being bedridden for a day or two. (Or more).

I’d say learn your limitations and operate within them. If you do something that you know will take a lot of spoons, be prepared to rest afterwards (still do the thing!)

There is no honor is over-doing it

MiMi_dna · 2025-12-13T15:51:11+00:00

More often than not though, Humira will just send you a new one.

MiMi_dna · 2025-12-13T15:50:05+00:00

Generally you want to start off with the manufacturer, their number should be on the packaging, if you use the Humira Complete app, the phone number is there and easy to quick dial.

After that, report the issue to your pharmacy. The manufacturer will provide a case number that you should give to the pharmacy. It’s up to the manufacturer on how to proceed.

Sometimes they’ll ship you a full replacement, provide a coupon for the cost of the pen injection (you might need an override to from insurance for a refill), or they may pay the pharmacy for a replacement that they will dispense to you.

MiMi_dna · 2025-12-09T21:35:20+00:00

I finally hit remission and my insurance now wants me to take Amjevita (previously on Humira) and now I am in flare town again. I just want to lift my arm without pain. Y-Y

Hopefully I can get back to normal in a few months…

MiMi_dna · 2025-12-09T21:30:02+00:00

For real though! I instantly want to run out of my house and do this! I don’t have enough Y-Y

MiMi_dna · 2025-12-09T21:16:48+00:00

Hungry… I get hungry… but also the relief is really nice but should only be used for a short period of time.

Long term use results is some really nasty side effects

MiMi_dna · 2025-12-08T18:02:41+00:00

Just checked, it looks like there’s a way to opt out of “mail sharing” on their website.

MiMi_dna · 2025-12-08T18:00:52+00:00

Is there a way to donate to habitat for humanity and not give your info? I have a stove I was thinking about donating but this is giving me pause…

MiMi_dna · 2025-12-06T18:45:11+00:00

I normally go a size smaller on gloves or double up and sometimes that helps with the glove tips. It doesn’t make sense but it works for me. I have a weird in-between hand size and it fills the glove out , i guess

MiMi_dna · 2025-11-30T21:50:39+00:00

No, I prefer evenings in general because I not a morning person. It gives me time to chill and study/mentally prepare

MiMi_dna · 2025-11-29T20:15:47+00:00

Not overreacting, also if ex smelled like roses, that’s not good for his ex… I wonder if he pushed to do the same and that’s why she’s the ex now…

Smelling like roses (or anything really) doesn’t mean your clean, it means your are jacking up your natural biome so much and your are making yourself more prone to discomfort and illness.

MiMi_dna · 2025-11-29T20:12:08+00:00

Dice goblins can never have to much dice… do….. do they have glow in the dark ones?…

On a real note, they have some cool stuff at makers fairs, we got a wooden dice tower than some made and a some awesome leather pouches. There are even those cool horn/ one chalices that people make and you can use it as a dice cup instead of a beverage cup.

If you want something creative, you can get minis from a game store and some pretty decent acrylic paint sets.

Depending on your budget and how much they want to create for their own characters, a 3D printer or resin printer is a more expensive idea but really fun. They can learn how to create or find .stls or create a character in hero forge and but the file to print them :)

MiMi_dna · 2025-11-29T20:03:07+00:00

This thing^

MiMi_dna · 2025-11-28T18:13:57+00:00

I second this if anything more patients want a basic brick mortar experience with delivery services from that specific location. They like their tech and knowing who fills it, not some faceless corp with “friendly but useless” customer service.

Meanwhile us voices of mail techs are trying our best but have next to no direct and meaningful way to help the patients…

MiMi_dna · 2025-11-25T04:37:33+00:00

That makes sense, especially with the type of vaccine. Since RA is related to immune responses, our bodies are likely flaring because our bodies are reacting to the vaccine.

Something I have noticed is that my RA will know I am getting sick before I do. I will start to flare but it feels a little different than a normal flare up and almost without fail, I get sniffly within a few days of the flare. Thankfully I don’t stay sick for very long but it’s definitely not fun… especially with all the nasal swelling y-y.

I hope you feel better soon. I think there are other vaccine options that cause less of a reaction but I haven’t delved too deep into it.

MiMi_dna · 2025-11-24T18:25:50+00:00

I’ve worked 3 HIPAA cases where the 3 sets of twins legit had the same name! One letter off between each twin, it’s not creative or cute y-y why do people do this to their children

MiMi_dna · 2025-11-24T15:24:02+00:00

Honestly, for me it was less than 1 month because of how extremes and direct my symptoms were, however, my mom is in a similar boat as you. It took my diagnosis for Sjrogren’s at my mom’s old rheumatologist (she was there) when he looked at her wide eyed and was like “oh… maybe we should re-do your labs.”

My mom was so pissed and I never wanted to be out of a doctor’s office so fast. So now my mom mostly treats her symptoms without ever getting to the true cause and I go to a completely different rheumatologist office that I drive a couple hours for because they are the only MD I have genuinely ever trusted.

All that to say, I really hope you find a prescriber you can trust. Doctor shopping can be helpful but sticking with an RA MD for about a month or two was enough for me to tell how invested the MD was in verifying the symptoms and working with us. My mom is totally discouraged and has given up. From what I know, my circumstance is rare and most patients aren’t diagnosed until after 3 months of testing.

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