No more propafenone!!!! What???

[frazeej]

I'm in the U.S., diagnosed PAF ~3 years ago. Have achieved excellent control with propafenone (Rythmol).

My pharmacy informed me they cannot refill my prescription, as there is a supply side problem with propafenone. From what I have read, there is a dangerous shortage of propafenone in the U.S and Canada (at least), and this shortage has spilled over into shortages of flecainide and tikosyn! Apparently there is little to none to be had, and this is expected to continue until late February!

So what are us afiber's supposed to do now??? Personally, I would opt for low dose amiodarone, but I'm afraid all the anecdotal scary stories about it might have chased it off the pharmacy shelves! Other than that, I guess it's just going to be "tough noogies, deal with it"?

Please don't suggest ablation or mini-maze, we're a long way from that!

JimF

[mjames1]

What about Flecainide, if you doc thinks you qualify? I just got my Flecainide rx filled in the US within one day, so no shortage right now. I've seen it as low as $3 for a 90-day supply on Good Rx, without insurance which is about what I paid for it with Medicare. Now only if Eliquis would become a generic

Jim

[frazeej in reply to mjames1]

Jim: Excellent choice! We'll see what the doc/ pharmacy says. I figure even for a PIP, would be better than nothing!

JiomF

[Pjt55]

I hadn't heard that..yikes! I am on Tikosyn as you had mentioned Also. If I go off of it due to shortage, It can only be started/restarted with 5 days in the hospital . Let's hope any shortages get resolved ! (In USA).

[opal11uk]

I am in the same position, I have been on Disopyramide for 20 years and then couldn't get it from any pharmacy, actually phoned the manufacturers who advised that they had manufacturing problems!!! Told my cardio so he changed me over onto Propafenone, which I was anxious about but now settled with it and if I have to change again then I won't be best pleased lol. What to do about it, no idea , we are in the lap of the gods!!!

[Morzine]

hi in France we had supply issues with Flecanaide . I’ve been told the 100 long dispersal may rupture this year and if so do 50 twice a day.

The news says that amoxicillin and paracetamol may be affected….so it’s a world thing I think…..it’s the raw products to make the drugs are maybe the cause???

[Ppiman]

Isn't it amazing that these supply issues for drugs are still arising? Something has changed in the pharmaceutical manufacturing world that isn't being made public, I am starting to believe.

With patient monitoring, low dose amiodarone has been shown to be a safe treatment for AF, but the drug does have an extraordinarily long half-life and other aspects that make it less-than-ideal. That said, I gather that all antiarrhythmic drugs have potential higher levels of toxicity compared with rate control medicines.

ncbi.nlm.nih.gov/pmc/articl...

Steve

[frazeej in reply to Ppiman]

Steve: I've read about low dose amiodarone and could go for that as an alternative, but.......my cardiologist seems to be in love with Tikosyn, and seems to feel that a 3-5 day stay in hospital for drug initiation (with significant dangers from T de P during that time is "no big deal". I disagree strongly, but he's the one that signs the scrip pad! We'll see what transpires!

JimF

[Ppiman in reply to frazeej]

I tend to trust doctors! I think you’ll be in good hands. Keep us informed maybe of what transpires?

Steve

[etheral in reply to frazeej]

My personal experience with Tikosyn has been totally positive..no arrythmias in 5 yrs and no side effects. Didn't even have to be cardioverted as I reverted to NSR while being dosed in the hospital. I hope you get the same results. It's certainly worth a try in my opinion..Best etheral

[frazeej in reply to etheral]

Thanks for your positive outlook!

JimF

[mary70]

drug.com.

"Propafenone Alternatives Compared

View side-by-side comparisons of medication uses, ratings, cost, side effects and interactions.

Propafenone

Metoprolol

Xarelto

(rivaroxaban)

Enter another drug to compare

Prescription only

Prescribed for Atrial Fibrillation, Atrial Flutter, Wolff-Parkinson-White Syndrome, Ventricular Tachycardia. propafenone may also be used for purposes not listed in this medication guide.

Prescription only

Metoprolol is a selective beta-blocker at dosages usually prescribed to lower blood pressure or relieve the symptoms of angina. Two different salts are available, metoprolol tartrate and metoprolol... View more"

[needlestone]

compounding pharmacy’s in US may be option. It will cost a lot more but if nothing else may be an option. I get my thyroid meds and other compounded since I am not able to tolerate pharma drugs. I do not take rate control though, as I control my rate with good food choices. I have even used compounded meds for my dog. Just not sure if they make rate control, but worth a check. They deliver by mail too.

[Jfbould1]

Hi Frazeej,

Recently I was exploring alternatives to propafenone as I felt its efficacy was waning. My cardiologist suggested I try dronedarone, which is apparently an updated version of amiodarone without the toxicity side effects. It didn’t work for me, but you may want to look into it.

BR John

[gdp333]

Go with Tikosyn aka Dofetilide. Avoid Amioderone like the plague - It gave me perifheral neuropathy which feels like barbed wire wrapped around my feet. Did Dofetilide for 5 years and all was good but then it just stopped working and went with ablation. Glad I did. I recommend Tikosyn - Dofetilide. Best of luck and blessings.

Regards...Gary P

[frazeej in reply to gdp333]

Thanks Gary for your reply and advice, and blessings to you also! Good you were able to get 5 years of benefits from Tykosyn, which here in the U.S. currently seems to be the "favorite" drug.

The major problem, in my eyes (aside from the rather high "adverse events during initiation", and the rate of relapse) is the necessity of a 3 day hospital stay upon initiation, to safely "titrate" the dose. The cardioguys seem to think this is a "walk in the park", and their suggestion is to bring a couple of books.....I'm not amused by this response. In my naive opinion, 3 days locked down in a hospital is a pretty major "life event", and quite disruptive, to say the least:

The procedure according to my cardioguy is to first wean you off propafenone, and hope you don't go into afib. If you do go into afib, Tykosyn can't be started, you you have to be DC converted, and then observed to see if the conversion holds-this potentially adds 2 additional days onto the hospital stay. If you stay in NSR, then the three day Tykosyn introduction can start. Whew! Not exactly a walk in the park!

JimF

[Bikica1234]

heyI would like to know what dose of Propafen you take? I use Propafen 150 × 1 as needed for heart palpitations when I feel worse than usual. Otherwise, I am on constant therapy with Bisoprolol 2.5 mg a day. Bisoprolol does not help me much. What are your experiences with Propafenone?

Best regards