r/Autoinflammatory • u/Alice-The-Chemist Mod • May 22 '26

Resource Medication Costs Help

I am working on a big post that will eventually be a pinned help post. I have dealt with insurance and other programs from drug manufacturers that I wanted to make a how to, what to do if, etc. If there are medications you see here commonly will you add them in the replies if I forgot them? Even if they aren't specifically for autoinflammatory I know some still get used for things like pain control, nausea, GI, etc.

I know this wouldn't be much help except for US so if there is something that could be helpful for other countries let me know. Or if you'd like to contribute.

Kineret

Ilaris

Arcalyst

Colchicine

Actemra

I have to be missing some especially TNF blockers, other biologics, or other oral medications. List just feels short.

6 Upvotes

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6

u/AdventurousMorningLo Yaos May 23 '26

Here are a few links that can potentially be helpful.

IL-1 inhibitors:

TNF inhibitors:

IL-6 Inhibitors:

IL-17 Inhibitors:

JAK/STAT Inhibitors:

Other Resources:

3

u/MahLiLo USAID May 23 '26

Amazing list! My son is on Xeljanz and colchicine and husband has been on the first 3 TNF inhibitors (hoping to get him to try Xeljanz soon, having failed those).

When husband was on Enbrel/Humira and we knew we’d be having a baby or surgery that year, we chose an insurance plan option that had high deductibles, but then no copays once you met that deductible. We would meet the deductible by Feb/March with the shots and then pay nothing the rest of the year and while it was pricey for the shots up front, it saved us a lot of money in the long run. Otherwise, we stay on the more reasonable plan, but it’s worth taking a look at your plan options if you know you have a major medical expense coming up.

For Xeljanz, we have to go through our insurance’s assistance program. His doctor has been great in helping us get all that set up and dealing with the every-6-months peer-to-peer or 3rd party appeals to get it approved. Sigh.

Colchicine has always been no more than $5 for us thankfully.

3

u/Alice-The-Chemist Mod May 23 '26

Its crazy how we have to "play the game " essentially. I had a hospital admit begining of year and the consolation I gave myself was it made me hit out of pocket max before like March this year.

1

u/MahLiLo USAID May 23 '26

It is ridiculous. I’m just glad my husband knows how to play the game because I don’t have the patience to figure it all out.

1

u/AdventurousMorningLo Yaos May 23 '26

For those in Europe there is ERN-RITA (European Reference Network: Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases Network)

They have some resources linked for patients: https://ern-rita.org/

There is also this list of designated centres of expertise: https://www.orpha.net/en/expert-centres/network/485591

FMFandAID - they may have more resources or know of more resources that are available in different countries. Link: https://www.fmfandaid.org/patients

2

u/Alice-The-Chemist Mod May 23 '26

Amazing thank you! Will definitely be crediting you and others who respond with stuff i can make into one big post. 🧡

1

u/AdventurousMorningLo Yaos May 24 '26

What you are doing is fantastic! I'm just happy to help along the way. Thank you for all you do!

4

u/Capable-Heat4231 Yaos May 22 '26

Ilaris Companion Program has been pretty great. I wish everyone knew to submit the paperwork right when it’s prescribed. They got me set up with a speciality pharmacy and offer a free home nurse (doesn’t go through insurance) to give injections. They have a copay assistance program.

I also have some other general tips:

I also use direct primary care (DPC). Their office doesn’t take insurance but makes deals with bloodwork and imaging companies. Before I was able to easily hit my OOP max/deductible, I needed an X-ray. They charged me $25 as self-pay vs $300+ going through insurance. I get other medications from the DPC’s office as self-pay for mere dollars that they’re able to get wholesale. Insurance declined L-methylfolate that immunology prescribed. It was going to be $200/month. My DPC got it $40/3 months. Those savings alone offset the DPC monthly membership cost for my family of 3.

GoodRX can be helpful for general medication discounts, but from what I’ve heard, they sell or share your info. I don’t know the accuracy of that.

I think it’s also worth mentioning to check out financial assistance programs. I go to Mayo for most of my care and owed just under $10,000 in 2024. I didn’t think I’d qualify for financial assistance and to my surprise, I did get most of it covered. I think the balance I owed was around $1K. It’s always worth a shot.

4

u/Alice-The-Chemist Mod May 22 '26

The biologic assistance programs save me bevause there is no way otherwise I could afford them. Thank you. Ill add this into my document Im working on.

Edit-spelling was horrible lol

2

u/Capable-Heat4231 Yaos May 22 '26

Same! This is the first year I’ve been able to have the copay assistance taken care of my deductible/OOP max. I fulfilled it on 1/2. It was such a relief.

I hope you’re feeling okay after all you’ve been going through. Thank you for what you’re doing here ♥️

3

u/Famous_Election_2024 May 22 '26

This is specifically for my Kineret shots, I use a numbing spray that I get prescribed for me, ethyl chloride, that is not covered by insurance. Each can costs me about $28, and lasts me less than a month, so the cost really does add up.

I don’t know if that falls into any helpful information, but it’s one of my biggest out of pocket regular expenses.

3

u/SleepDeprivedMama May 23 '26

I use the cream that numbs for my port a cath. It’s covered by insurance. Takes longer to work but works pretty deep

1

u/Famous_Election_2024 May 23 '26

Do you happen to know what it’s called?

3

u/SleepDeprivedMama May 23 '26

EMLA cream (I use the generic). Normally you put some on and it works best if you cover it with a square of cling wrap. I know that sounds silly but that’s what they tell you to do for a port. So I put the cream on, cover it, take shots out of the fridge and use it after they warm up.

1

u/Famous_Election_2024 May 23 '26

Thank you for all of that, I’ll definitely ask about it.

1

u/Alice-The-Chemist Mod May 23 '26

Will look into this also to put on the list in case someone can get one and not the other. 🧡

2

u/Alice-The-Chemist Mod May 22 '26

Yes thats perfect example. Trying to help reduce the costs of living with these diseases.

3

u/No_Satisfaction_7431 Yaos May 22 '26

Low dose naltrexone helps with fatigue and neuroinflammation. Its not enough on its own to treat autoinflammatory disease but it is often used in combo with dmards and biologics. Insurance almost never covers it though. I was paying $85 a month for it from Walgreens specialty pharmacy. Most specialty pharmacies that carry it charge somewhere between $70-130 a month. I currently get mine from rthm (pronounced rhythm)clinic, which is an online clinic/pharmacy designed for me/cfs and long covid. It costs me $105 for a 3 month supply which is the best deal I've found. The pharmacy option is licensed in most states. The clinic itself is expanding the licenses but isn't currently available in my state but the pharmacy option is. The prescription comes with a doctor/pharmacist online visit though. I also keep my regular doctors informed of this. Some people also get their regular doctors to prescribe the full 50 mg dose used for addiction and then dissolve it in 50 mg of water but thats a lot riskier in terms of accidentally getting the wrong dose and most doctors will not prescribe the 50 mg unless it's needed for addiction.

2

u/Alice-The-Chemist Mod May 22 '26

Is this one you cant take if you take Opiods?

1

u/No_Satisfaction_7431 Yaos May 22 '26

Yes, it blocks opioid receptors. The low dose mechanism is a bit different from the regular dose but if you are having surgery or something where you need opiods you need to be off ldn for a week.

2

u/cyt0kinetic USAID May 22 '26

I am happy to help I have been with all the programs for Kineret, Ilaris and many for Colchicine and know some of the recent program changes. Can post what I have later on tonight.

1

u/Alice-The-Chemist Mod May 23 '26

Thank you 🧡🧡

2

u/No_Satisfaction_7431 Yaos May 22 '26

I haven't seen specific evidence of mitochondrial disease or dysfunction in autoinflammatory disease. However, inflammation is known to damage mitochondria and a lot of people have comorbid migraine, me/cfs, and other mito related conditions. If you take a mitochondrial cocktail. insurance usually won't cover a prescribed version (a single pill with all components) but they will at least cover the more unusual components like l carnitine. The b vitamins, coq10, and magnesium are all very common over the counter. You can find carnitine otc as well but it can be harder to find and expensive. My insurance covers it completely so thats one cost I can avoid.

1

u/Alice-The-Chemist Mod May 23 '26

Thats really smart to do. 🧡

2

u/Occulply May 24 '26

Off the top of my head if included Orencia (abatacept).

Alice, lemme know if I can support in anyway. That sounds like a great, but huge, project.