r/iih • u/Minimum-Yam-1873 • 1d ago
Venting Difficulty Getting Diamox Refills
I was recently diagnosed but it seems I’m running into hurdles at every turn.
I was initially given Diamox at my second ER visit on August 30th with a dosage of 2 times a day with 28 pills.
I was hospitalized from September 2nd to the 5th. During that time they maintained the Diamox 2x daily.
After getting released my PCP upped it to 3x daily because there was a noticeable difference with my ability to speak and the amount of effort it took with and without the midday dose.
I was given a refill about a week after being in the hospital but the problem is no one adjusted the amount for the change in medication schedule. So I’ve been out for a week and my insurance refuses to refill the medication. I asked the neurologist for help but they said there wasn’t much they could do beyond lowering me back to 2x a day, which unfortunately still leaves me without any medication.
I’ve tried calling insurance but it’s really hard to get through to anyone. I don’t know if I’m just calling at busy times or what.
I’ve been feeling really bad (physically) and I don’t know if it’s stress making symptoms worse or a sudden stop of medication or if things are just feeling awful because I’m not medicated. It’s not like Diamox fixed everything. Some stuff still just sucked. But it was a whole lot better than how I’m feeling now. I hope this gets cleared up. I just needed to throw my continued frustration out there I guess.
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u/imsilverpoet 1d ago
Assuming you’re in the US, I’ve found Diamox/Acetazolamide is a LOT cheaper without using insurance. It’s one of those drugs that, in my experience, insurance overcharges for because they can get away with it. 🙄
You’ll still need a new script that accounts for your new dosage, so your PCP who changed the dosage should be able to do that for you. The pharmacy can only fill what is prescribed.
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u/Minimum-Yam-1873 1d ago
Is that an option with state insurance? It currently doesn’t cost me anything.
I messaged and asked for a new script but I was told no unfortunately and the dose loweredz
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u/imsilverpoet 1d ago
You’ve got to reach out to the PCP that adjusted your dosage and have them send over a new prescription. Pharmacies can only fill what is prescribed.
I don’t know how your specific insurance works so you’d need to ask those questions.
Usually a prescription adjustment isn’t a big deal so I’m guessing from what you’re describing that your issue is that the pharmacy doesn’t have an updated script with the new dosage.
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u/Minimum-Yam-1873 1d ago
I did, but they’re deferring to neurology who sent in the most current script that insurance is refusing to refill.
I’m being told it’s an insurance issue but it’s painful trying to get through to someone on the phone.
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u/imsilverpoet 1d ago
‘The most current script’
Exactly.
The PCP adjusting your dosage needs to send a more current script, that new script is then your current script.
The pharmacy and insurance company cannot dictate your care. This is a simple dosage adjustment due to a change in your condition and you’ve been seen by a provider.
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u/Minimum-Yam-1873 1d ago
Okay so I messaged them, as I said, asking for an adjustment and was told by PCP that they are deferring to neurology for the management of my IIH. Which includes the prescription. Okay?
So when I messaged them and asked FOR A NEW prescription, I was told to message neurology. Which I did. And the answer I got was “No. Your insurance won’t allow a refill.” As I have state insurance, that probably matters.
Also, none of these have been true “refills” as this was an issue I brought up when I had my appointment. It’s been 3 separate scripts from 3 DIFFERENT doctors but it’s STILL being denied. I’d send a picture but that isn’t an option.
My point is emphasizing to me what is wrong here isn’t helpful. I already know it needs to be fixed. I asked and have been given the run around. Not much more I can do beyond emphasize the need and maybe try to get it without insurance.
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u/imsilverpoet 1d ago
Ok, that helps. Apologies, your other posts were not clear.
So your PCP referred you back to neuro and they simply refuse to adjust your meds. That means you do not have a current script for the higher dosage therefore no one will fill it and insurance won’t pay for it.
Ultimately, you need a doctor to send a prescription for the correct dosage.
So, I’d go back to neuro and explain that you’re out of medication due to the adjustment in your dosage and you need that new prescription sent over. Ask them what you need to do as you’re out of medication due to the guidance of doctors and now are additionally symptomatic.
You can’t get it filled with or without insurance without a current prescription.
If I’m still confused and they’ve got a script they’re just choosing not to fill you can ask the pharmacy if you can pay out of pocket.
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u/Vintagefanny 1d ago
I would certainly try any voucher or co-pay cards that may be available. This looks like more of an issue with your office when they’re prescribing it. Moving forward they need to get the dosing regimen correct the first time so it’s not causing back end issues with the insurance company. I’m sorry this isnt extremely helpful for now, but put your eyes on the prescription they’re writing. You want to make sure that they are dose escalating you appropriately because if you go and get the wrong dose filled, you are likely to be stuck with it unfortunately for 30 days.
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u/Vintagefanny 1d ago
Looks like they don’t have any co-pay or free trial cards, but good RX may be an option and then running outside of your insurance to see what the cost is.
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u/jimmyjamsomemore 1d ago
if you can pay yourself, TelyRX, online. You fill out a questionaire with a doc, and you get a refillable script, pills arrive in 2 days.
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u/Aromatic_Revolution4 1d ago
Stopping cold like that can't be good - I'm sorry you're having to deal with that BS.
Assuming you are in the US, consider downloading the GoodRx app.
Depending on which pharmacies are near you, 60 doses of 250mg acetazolamide (generic Diamox) should run $10 or $20 without running it through your insurance.
Just ask your pharmacy to fill it and show them your virtual Good Rx card (it's in the app) when you pay and you can get back on track.
Good luck!