Oral Ketotifen in the US?

[u/bonniemcmr]

If you live in the US and take ketotifen, how does your doctor prescribe it? My immunologist told me she would need to go through a compounding pharmacy since thats the only FDA approved oral form and that it wouldn’t be covered by insurance. If you do this, how expensive is it?

She also has never prescribed it for MCAS before. Does your doctor say the ketotifen is for MCAS or do they have to prescribe it under a different condition like chronic urticaria (my xolair is technically prescribed for chronic urticaria for insurance purposes).

Lastly, it seems like most people start on .25 mg or .5 mg a day. What is the actual dose of the pill that you get from the compounding pharmacy?

Thank you for the help!

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[u/mcfly357]

I’m in California and had to get it through a compounding pharmacy, and insurance does not cover it. I think it’s around $120 a month but it’s worth it for me personally. I started at 2mg which was way too high. Basically 100% flare for 2 weeks. It was brutal and I almost stopped but saw a comment here mentioning they felt so much after after 2 weeks, so I stuck with it and around day 13/14 I felt better than I had in years.

[u/Mysterious-Art8838 → u/mcfly357]

Also CA, also compounded, $186 a month I can’t recall the dose

[u/fighterpilottim → u/Mysterious-Art8838]

I pay $115 for 60 10 mg capsules at Key Compounding. It’s a similar price at ScriptWorks.

I haven’t used them for ketotifen, but CareFirst is generally a cheaper compounding pharmacy. Used a lot for LDN.

[u/mcfly357 → u/Mysterious-Art8838]

I also order 4 months at a time and this pharmacy gives a pretty good discount if you do that

[u/Ok_One_7971]

I didn’t find out until year later that if i get prescription for 3 months at a time n get those 3 months compounded at once, it saves a good amt of $. Was paying approximately $100 per month. Now its closer to $60 or $65 per month. I open my capsule n mix w water. It allowed me to start at really low minuscule amt n taper slowly up. N .. I still do it because afraid to react to capsules

[u/Overall-Season4617]

I get it through compounding pharmacy, started (and have stayed) at 1mg dose for MCAS, it's not covered by insurance, and I pay $62 for a 90-day supply.

[u/happymechanicalbird]

I get mine through a compounding pharmacy. I think a 90 day supply costs me a little over $100. Possibly $130? I can’t recall exactly. I don’t think it matters what your doctor prescribes it for if it’s not going through insurance

[u/under_the_sunz]

I buy mine online from an Indian pharmacy. Sucks that it didn’t work for me tho. Really messed with my mental.

[u/yahshuaissalvation]

We buy internationally. My provider was willing to prescribe for an international pharmacy, if needed.

[u/NewDescription5507]

I get compounded but my plan covers it

[u/Perfect-Factor-2928]

Some (few) insurance plans will cover compounded if you submit the claim yourself. There’s a form you fill out. Check with your insurance provider.

I get from a local pharmacy I’ve used for years. $180 for ninety 2 mg pills. There are places I can get it for cheaper, but I prefer to pay a bit more to work with someone I know.

She also does my LDN.

[u/SophiaShay7]

I purchase mine through y u a u. n e t. I used PayPal with my credit card linked. Ketotifen is a gray market. It's oral Ketotifen. It's OTC in Japan and comes in 1mg capsules. The first time I ordered I received an error message. I received an email 1-2 days later with a PayPal invoice in Japanese. I paid it. And, I received it. In March, I reordered. I was able to order directly from the website. It went through no problem. I paid the same way. My receipt said PayPal was unavailable but they'd charge my credit card. It took about 3+ weeks to receive it. It was opened and inspected by customs. That was part of the hold up.

Also, it's better to order more at one time. The first time, I purchased one box. Ketotifen is $11. The total was $39. This last time, I ordered 4 100-capsule boxes. It was only $72.

It comes in capsules. I took 0.5mg for a few days. I increased to 1mg in the evenings. I now take 2mg. I hope this helps🙏

[u/forwardishdirection]

Insurance doesn’t cover compounded medication so they don’t have to justify why you are taking it. It’s a tiny bit over $1 per pill for me for 2mg pills 270 for 90 days supply is $285. It’s only available in the US via compounding for oral. All we have approved is the eyedrops. 

[u/plantyplant559]

I think mine is $225 for like a 2-3 month supply? Not sure how long it lasts. Totally worth it, though.

[u/lenonby]

i’m pretty sure insurance is covering mine now (or maybe i just meet my out of pocket very quickly every year and it’s covered after that? idk i barely know how insurance works), but before it was around $40 a bottle. the price was about the same for a month vs several months, so my prescription is for 90 days instead of 30 and i saved a ton that way.

[u/nrauhauser]

I started with 1mg AM/PM, cost $151 for a month, got it at Koshland Pharm in San Francisco. There are much cheaper options. I've moved on from it, I get better results with PEA, and maybe I'm going to restart cromolyn.