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poolshockguy
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Photon
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Photon
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AllGoodThings
Member
I've tried discussing cilnidipine with both my cardiologist and my nephrologist through the messaging feature available on MyChart. I linked articles, explained the fact that it's a 4th generation calcium channel blocker, blocks both N and L channels, and that it only has orphan drug status with the FDA currently I explained why I think it would be beneficial for me, specifically. The cardiologist said he would send in a prescription for me, and I was very excited. Went to pick it up.... he had prescribed clonidine. My nephrologist wrote back and started talking about clevidipine, thinking that's what I meant. So frustrating. I've got a few years worth on its way from PCT24x7 as we speak, will order more before end of month if it agrees with me.
Edit: I was under the impression that it was already approved as an orphan drug for the treatment of systemic sclerosis, but apparently I was mistaken.
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Photon
Member
BP_6
Member
This. No doctor in the USA, regardless of if they like it or not can prescribe it ATM. It is not FDA approved and no standard pharmacy following the rules in USA will have it either.
Photon
Member
About AISA-021 – Aisa Pharma, Inc.
More than 27 million Americans suffer from Raynaud’s and yet no drug is specifically approved for the treatment of Raynaud’s disease in the United States.
aisapharma.com
It writes about orphan drug status, but nobody can get it yet, till its approved.
I got a feeling it'll be (1) expensive once approved and (2) will require prior authorization..so
AllGoodThings
Member
I was under the impression that it was already approved as an orphan drug for the treatment of systemic sclerosis, but I was mistaken.
Ghoul
Member
We're in a bizarre situation where a long standing best in class medicine is impossible to get in 99% of the world, including the US, but it's been around so long it's a cheap generic in the 3 countries it's available, Japan, South Korea, and India.
Once approved in the US for that rare condition it'll cost thousands a month.
25 years after approval it'll finally become a generic in the US, and only then will it be cheap and practical enough to be prescribed off label for blood pressure, finally displacing Amlodipine.
Millions of people in the US will needlessly develop edema in that time from Amlodipine. It opens large vessels, but without N channel blocking tiny vessels contract in response, stretching under high pressure until they're damaged to the point water is forced out of the vessel walls, most commonly collecting in the ankles and legs.
Edema isn't a "temporary" side effect. You will usually recover after it starts happening by stopping the BP med causing it, but eventually there's no more elasticity and you're left with permanently leaky vessels.
Cilnidipine prevents this from happening.
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SpaceGhost
Member
I got a three month supply after people started hyping it up here and it did nothing for me. Went back to 2.5 amlodipine and my numbers are back to normal.
Ghoul
Member
Amlodipine caused me reflex tachycardia and angina, I dont think Ciln would be any different. What else can I stack alongside Telm thats not a CCB ?
Ghoul
Member
It's actually ideal in someone prone to reflex tachycardia and angina.
Cilnidipine lowers blood pressure by relaxing blood vessels like other calcium L channel blockers, but it also blocks N channel nerve signals that trigger the reflex increase in heart rate. This prevents reflex tachycardia, reducing the heart’s workload and oxygen demand. Because of this, cilnidipine not only doesn't cause reflex tachycardia or angina, it protects against them from other causes as well.
explodingHeart
Member
The end of de minimus and a larger CBP workforce to inspect inbound parcels will have more impact than a 25% tariff will. It'd be nice to think that our prices would simply rise by 25%, but @Ghoul made solid points about how it is illegal to import nearly any medication into the USA without a massive amount of headache and paperwork. Even with a prescription, those in the USA are expected to purchase through legally authorized channels only.
I just picked up another 3 years' worth of cilnidipine to add to my existing stockpile to ensure I have plenty of time to explore options as events unfold.
Ghoul
Member
For now tariff rates are irrelevant as our packages, with declared values under $800 fall under de minimus exemptions from customs duties.
This ends 8/29/25, and all parcels entering the US are subject to customs duties being charged.
Packages shipped starting 8/29/25 will be required to provide more detailed "standard" customs paperwork, and customs duties due will be calculated by CBP based on the declared contents.
The USPS will send or email you a notice of the charges due, you pay online or at the post office, and then it'll be delivered.
As to the actual rate, once a deal is worked out, I'm going to guess the tariff rate will be closer to 15%, not 50%.
If you want to avoid all this make sure you order early enough for it to be shipped by 8/28/25. The 8/29 cutoff date applies to the date the pack departed its origin, not when it arrives.
This ends 8/29/25, and all parcels entering the US are subject to customs duties being charged.
Packages shipped starting 8/29/25 will be required to provide more detailed "standard" customs paperwork, and customs duties due will be calculated by CBP based on the declared contents.
The USPS will send or email you a notice of the charges due, you pay online or at the post office, and then it'll be delivered.
As to the actual rate, once a deal is worked out, I'm going to guess the tariff rate will be closer to 15%, not 50%.
If you want to avoid all this make sure you order early enough for it to be shipped by 8/28/25. The 8/29 cutoff date applies to the date the pack departed its origin, not when it arrives.
Photon
Member
Have you considered switching to a concierge or directPCP doctor?
In between all the doctor co-pays, I'm already paying close to $1000 a year just for prescriptions. My insurance has very good medication coverage so the main hurdle for me is always getting the prescription. If i can get it prescribed, the medication is almost entirely covered most of the time.
Ivabradine for example, i went from paying ~800 a year IndiaPharma to ~250 a year USPharma where the majority is spent on doctor visits just to renew the prescription. I'm also on several controlled substances, so I need to do monthly visits just to renew them, but some of these medications aren't available in India either.
Branded named Vascepa under my insurance, for instance is $10, even without the discount coupon. The coupon only saves me $1. Repatha as well, thats an additional cardiologist visit to renew..
I'll probably save alot more, even if i have to pay $100 a month for a directPCP doctor, if i can get all medications prescribed by him. Medication quality will also improve (USPharma).
It will also save me time on having to stockpile, worry about customs, tariffs, looking for a good brand for India medication, finding space for medication storage etc. Medication you get is supposedly also better inspected by the FDA, better kept etc.
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bigdaddyandfriends
Member
Have you considered switching to a concierge or directPCP doctor?
And for some other drugs available from India that will be very hard to get prescriptions for (tapentadol, benzodiazepines (IndiaMart, not PCT24x7).
I can also get ivabradine cheaply through insurance, and now Pitavastatin too via CostPlus. Azilsartan I’ve been buying though a manufacturer program but it’s still $600/yr and probably not worth it over telmisartan.
thats a good option, except for some drugs not on the USA formulary like cilnidipine and carisoprodol
And for some other drugs available from India that will be very hard to get prescriptions for (tapentadol, benzodiazepines (IndiaMart, not PCT24x7).
I can also get ivabradine cheaply through insurance, and now Pitavastatin too via CostPlus. Azilsartan I’ve been buying though a manufacturer program but it’s still $600/yr and probably not worth it over telmisartan.
Photon
Member
Naturally, if not approved in US, US doctor's can't prescribe it. Thankfully cilnidipine, for instance, is easily affordable. I guess the assumption is that a concierge or direct pcp doctor will be more willing to prescribe more medications (controlled et all), seeing as to how they aren't "limited" by insurance.
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