Ivabradine appears to work quite well in POTS – but should we stop there?
Ivabradine was approved for use in the European Union in 2005, but it’s pretty new to the scene in the U.S. It was FDA approved in only 2015. That means it doesn’t have much of a history but it would be accurate to say that it hit the (postural orthostatic tachycardia syndrome) POTS community in the U.S. with a bang.
(Check out Ivabradine on Wikipedia or Corlanor on Drugs.com, though, and you won’t even get a hint that it might useful for POTS. Corlanor, for them, is a heart failure drug that inhibits a “pacemaker current”, thereby reducing pacemaker activity and slowing heart rate – allowing the heart to fill with more blood.)
Ivabradine goes by the trade name Corlanor in the U.S., Procoralan (worldwide), Coralan (in Hong Kong, Singapore, Australia and some other countries), Corlentor (in Armenia, Spain, Italy and Romania), Lancora (in Canada) and Coraxan (in Russia and Serbia), Ivabrad, Ivabid, IVAMAC and Bradia (in India).
Ivabradine has been able to increase heart rate variability and reduce sympathetic nervous system activation – both of which are found in ME/CFS/FM.
It was the ability of the drug to slow the heart rate that drew POTS doctors and researchers eyes. They had a couple of drugs – such as the beta blocker propanolol, pyridostigmine bromide (Mestinon), Clonidine – on the shelf to do this, but Ivabradine is different from some other drugs in that it slows the heart rate without affecting other cardiovascular factors (myocardial contractility, ventricular repolarization, or intracardiac conduction) and has fewer side effects.
A 2018 POTS Ivabadrine review reported some eye-opening results. Unfortunately, no large-scale placebo-controlled studies have been done but the two open-label trials, three retrospective cohort studies, and eight case reports suggest Ivabradine may work very well in POTS. The first Ivabradine case series in 2011 found that 70% of POTS patients reported reduced fatigue.
The drug appears to work quite quickly, as one study evaluated the effects of a single 7.5 mg dose. Overall, it appears that the drug has helped from about 55-75% of patients – most of whom had failed at least one standard POTS treatment with most patients having failed three. One study found that 72% of patients had “complete resolution or great improvement” in their symptoms (!).
The review also suggested that Ivabradine might be successfully added to treatments such as fludrocortisone and midodrine. The authors suggested that using lower doses of several drugs might be more effective than trying to maximize a single drug.
The doses in the study ranged from a low 2.5 to a high 20 mg/day. Initial doses ranged from 2.5 once daily to 5 mg twice daily. The most common starting dosage was 5 mg/day in one or two doses. The mean maintenance dosage was around 9 mg/day.
The drug appears to be well tolerated. The most common side effects were mild, and included dizziness, nausea, headache, fatigue, and visual disturbances. Of the 124 patients assessed, only 3 discontinued the drug because of side effects. (Ivabradine can produce severe side effects – apparently in the higher doses used in heart failure.)
The news so far is good. As of 2018, though, only 132 POTS patients had been assessed and none of the crucial large placebo-controlled, double-blinded studies have been done. Another recent review of POTS mechanisms and treatments took that into account when it stated that “in the absence of a prospective comparator study, ivabradine should not be considered a first-line therapy drug” drug for POTS.
A 2020 review concluded that “ivabradine can be safely used in patients with POTS symptoms as very few side effects have been reported, along with a dramatic improvement in the symptoms like palpitations, syncope, and falls due to loss of consciousness”. Ivabradine can be offered as a second-line treatment in patients with POTS as beta-blockers are mainly used at first.
A study funded by, guess who – Dysautonomia International – comparing Ivabradine and Propanolol in POTS – underway at the University of Calgary is going to provide a “comparator study”.
Ivabradrine vs Propanolol
Given Ivabradrine’s apparent effectiveness, and the low levels of side effects in the doses used in POTS, people using propanolol might consider switching. Propanolol’s “common side effects” are legion and include nausea, vomiting, diarrhea, constipation, stomach cramps, rash, tiredness, dizziness, lightheadedness, sleep problems (insomnia or unusual dreams), vision changes, deceased sex drive, impotence, or difficulty having an orgasm.
The big problem doing so is physician knowledge and cost. After Amgen bought up the rights to Ivabradine in the U.S., and got it approved for heart failure in 2015, it jacked up the price to around $4,500 for a year’s supply. Dr. Grubb said many of his patients are getting around the high cost by buying from Canada.
Atypical POTS?
If you’re thinking you don’t have POTS because you’re not experiencing dizziness then maybe think again. In a case report two Pakistani researchers asked “Is ivabradine a wonder drug for atypical POTS?“. A 19-year old women had had four fainting episodes over a year and a half but no history of fatigue, dizziness, nausea or other symptoms that were suggestive of POTS. (Interestingly she’d had a severe enough concussion three years earlier to make her withdraw from sports.)
An extensive workup did not reveal any abnormalities, but during a tilt table test her heart rate roared to almost 150 bpm and she lost consciousness. (Her blood pressure remained normal.)
Neither increased fluids and salt, nor fludrocortisone (Florinef) helped, but when she was put on 2.5 mg 2x’s/day of Ivabradine, her symptoms improved.
Beyond POTS?
We’re still learning about Ivabradine and may be just touching its potential.
Take propanolol. It’s been around since the 1960s – giving it more than enough time to sow its oats – and it has. Over time it’s become used in a wide variety of diseases including hypertension, heart failure, anxiety, migraine, glaucoma and PTSD! As time has gone on, though, propanolol’s use has been cut back a bit as studies have shown it may cause hypertension.
My feverish little brain is always working overtime trying to establish connections. Maybe it’s working too hard – but here’s the question: if propanolol can end up being used to treat performance anxiety, and PTSD, and other conditions, why shouldn’t Ivabradrine – which has fewer side effects – end up being used for conditions other than heart failure and POTS?
Being the newbie Ivabradine is, we exactly how it works. It clearly works on the heart, but does it do other things? A recent hypothesis paper “Ivabradine modulates the autonomic nervous system by affecting the “little brain” of the heart: A hypothesis” suggested that it does – and in ways that could benefit people with ME/CFS, fibromyalgia and other diseases.
The paper pointed out that Ivabradine improves parasympathetic nervous system functioning – which is impaired in ME/CFS and FM. Ivabradine has been able to improve heart rate variability readings, or has reduced sympathetic nervous system activation in heart failure patients and in hypertension patients with metabolic syndrome.
How nice it would be to turn that fight/flight system down.
The “Little Brain”
Nobody knows how it does this – as Ivabradine does not affect the alpha or beta receptors that regulate the sympathetic nervous system – but the two Slovakian researchers have an idea.
Enter the “little brain of the heart” or the “intrinsic cardiac nervous system”, which consists of a complex interplay of nerves in the heart, most of which talk to the parasympathetic nervous system. The researchers believe Ivabradine enhances the cross-talk between the heart and the parasympathetic nerves – calming the system down and returning the autonomic nervous system to a state of “balance”.
Some researchers think Ivabradine is using the “little brain” in the heart to reset the autonomic nervous system.
The authors note that simply slowing the heart down – and we know the heart rate in ME/CFS is raised in sleep – improves energy metabolism and reduces lactate production – particularly in low oxygen or ischemic environments (which may be present in ME/CFS. As reduced heart rate variability is the best predictor of poor sleep in ME/CFS one wonders if low dose Ivabradine might be helpful for sleep.
At this point, it’s all conjecture. It’s not at all clear that doctors would be willing to try a drug like Ivabradine in ME/CFS or FM patients who do not experience high heart rates upon standing. At low doses, though, it might make sense.
The Gist
- Ivabradine was FDA approved in the U.S. to treat heart failure. As a drug that slows the heart rate, it’s able to improve metabolism, increase heart filling and reduce lactate levels.
- Several trials (but no large placebo-controlled trials) have found it to be quite effective in from 55-70% of POTS patients.
- Other drugs such as propanolol and Clonidine have been used in a similar manner in POTS, but both have more side effects.
- Ivabradine is much more expensive that these other drugs in the U.S. but can be purchased via Canadian pharmacies at a lower cost.
- Ivabradine is also able – although it’s not clear how – to affect two common problems in ME/CFS and FM – low heart rate variability and increased sympathetic nervous system activation.
- Some researchers believe that Ivabradine is affecting a complex group of nerves in the heart that are involved in parasympathetic nervous system functioning.
- A patient with “atypical POTS” who responded well to Ivabradine suggests that some people who do not have most of the symptoms of POTS may nevertheless have POTS – and could benefit from Ivabradine.
- If you’re wondering if you might have POTS, a ten-minute tilt table test is recommended, as tilt table tests under 3 minutes will misdiagnose a large percentage of patients.
- Likewise, the Bateman Horne Center recommends the ten-minute NASA Lean test – which you can do at home.
Do You Have POTS?
You may say that you don’t have POTS (dramatically increased heart rates (> 30 bpm) upon standing.) But are you sure? Have you had a tilt table test – and if you did – were you on the table long enough? Visser’s 2018 study showed that the median time for an accurate POTS diagnosis for ME/CFS patients was 3 minutes; i.e. if you were on the table for 2 minutes, there was a good chance your POTS diagnosis was missed. They recommended that ten minute tilt table tests be done.
The folks at the Bateman Horne Center also recommend 10 minutes for doing the at-home version of the tilt table test – the NASA Lean test. The “lean” in the NASA lean tests approximates what occurs during the tilt table test as you are strapped onto a table and lifted up. If you haven’t taken it, give it a shot.
Find out how to do the NASA Lean Test to determine if you have POTS or neurally mediated hypotension (reduction in blood pressure) here.
Note the atypical POTS case mentioned earlier. While the young woman had suddenly fainted several times, she did not regularly experience dizziness or even fatigue or even heart palpitations during her fainting episodes. Still a tilt table test showed that she did indeed have POTS and that Ivabradine helped. If it’s possible then to have POTS without experiencing dizziness or lightheadedness upon standing, it’s possible to have POTS without having some of the major symptoms associated with it.
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Just thought I’d say that POTS can be transient and that if it didn’t show up on a tilt table test that doesn’t automatically rule it out. Also I have a friend where it took almost 30 minutes for her POTS to show up on that test.
Goes to prove that dysautonomia is still an evolving science. I think of this when contemplating my own no-POTS Dx. I KNOW something is off, but evidently it didn’t show up with autonomic testing. Oh well…
Ivabradine is not a solution for ME. It has been used for about 4 years by several ME patients who also have POTS but its use has not resulted in significant amelioration of their ME symptoms. One PwME can only take 2.5mg and only at night because it increases fatigue and bleariness.
Several ME patients is a pretty small snapshot given how varied this disease is – I don’t know if we can tell about the entire ME population – but thanks for sharing your experience.
It didn’t help me either. Side effects. I think POTS can be a compensation factor in ME.
So when you slow down the heart you get less bloodflow and you feel more dizziness.
There is something wrong with the redbloodcells shape and thickness or vasculairsystem.
Actually the idea about slowing down the heart rate is to get more blood into the heart and ultimately pump more blood out of it. If the heart is beating too quickly there isn’t enough time to fill it up with blood. The slower the heart beats – the more time there is to fill it with blood. If your heart beat is already OK then maybe slowing it down is not so good, though.
I’ve been taking Ivabradine for 7 months and for me it’s been a game changer. About 3 months in I increased to 5mg a day with morning and evening meals. Taking it with food seems to make it last longer than on an empty stomach, though it kicks in a bit slower, and so putting off my evening dose until after food has also reduced the high sleeping heart rate and the spikes I record during sleep. And obviously it’s helped my POTS a lot too.
There are times when my natural resting heart rate is a bit too low with PEM, and I lower my dose when I see that.
Basically it’s helped my POTS and my pacing, but from days that I’ve had without it I can immediately feel the positive effect it has on me.
I can also see the difference to before I went on it, because my resting heart rate and HRV in the mornings (before I take it) are currently at the same level they were a year ago, but I feel far less awful than I did back then, and can do a little more.
My cardiologist in the UK prescribed it for suspected POTS, which I consider to be secondary to my ME.
For a while I worried it would affect my heart rate monitor pacing as I heard that lowering your heart rate artificially could lower your anaerobic threshold unpredictably. But I’ve actually managed to better find my AT since I’ve been on it, because I no longer go way beyond my threshold most or every time I stand up.
I haven’t experienced any side effects on it either. Except perhaps the first few times I took it I actually felt like I had an increase in energy.
Sorry this comment is very jumbled! Just wanted to leave some positive feedback from the UK.
Gijs I am with you there. There is definitely a problem with blood flow. Thick blood where the red blood cells become sticky from immune system antibodies and possibly problems with red blood cells deformability. Vasoconstrition of blood vessels resulting from viral infection and immune response causing inflammation and narrowing of blood vessels especially micro circulation and removal of oxidative stress. This all happens because of reactivation of latent viruses whether it be a slow progressive or sudden onset of viral illness the immune system is unable to clear the chronic active virus. As we age the immune system weakens and genetically we have varying immune systems,and varying responses to viral infection. Also these viruses that we all have also have different variants to the same virus. As we see with Covid it to is changing. EBV has a number of variants some worse than others. For most people they remain latent, but continuing stress can weaken the immune system and reactivation occurs. Different variants different symptoms? Covid has showed how little the medical world knows about viruses and really doesn’t want to spend the big bucks to know more especially when b Big Phama makes a fortune from medications resulting from viruses.
Like to read more details regarding the test group, practitioner administrating, organization at which this testing was administered. Difficult to discuss this drugs efficacy without actual white paper details. Thank you.
What kind of doctors would prescribe this? Still looking for a professional to help me.
You are on your own. Very few doctors even know what POTS is and virtually none of them know how to treat it. Those who do know how to treat it don’t know how to treat it effectively. I know how to treat it effectively, but I’m not a doctor, so if I tell you what to do I could end up in jail. That’s the crazy world we live in.
Would love to try ivabradine, however, it has one milk ingredient and 2 corn-derived ingredients in it. Sure wish pharma companies wouldn’t insist on putting major allergens in drugs.
Can it be compounded?
Yes, I agree with you Learner 1 – I have a big problem with modified maize starch and dairy, amongst other things. I was having some issues with my asthma (relatively recent addition to my collection of ailments – like 6/7 years or so) and was initially prescribed Symbicort (after I suggested to my doctor that my persistent difficulty in breathing etc might be asthma – I don’t wheeze – lower airways affected). I checked out the ingredients when I got a bit of a taste of infant formula after having taken the Symbicort. The answer came back – Yes, it does have milk in it, so a person can tell they have taken it. The manufacturers obviously don’t know much about inflammatory illnesses…
I have been taking Ivabradine now for nearly 6 months. My HR would hit 130-140 within a minute or two of standing.
Initially 5mg morning/night dropped HR 10-15 bpm (down to 55 for an hour or sleeping). I’m now taking 7.5mg to get the same effect – although rarely go as low as 55 now.
It has helped with palpatations but hasn’t changed SNS and I still feel shocking if on my feet for too long and still get lightheaded easily. I feel the blood pumping back into my head when I lie down.
I’m also on fludrocortisone 0.2mg which has bumped up BP from 80/60 standing to 115/70.
All of the above goes out of whack when in PEM.
It’s interesting that exertion can also produce a temporary POTS-like condition in some people with ME/CFS. Too much stress on the system I don’t know if they’ve examined blood pressure yet.
I’m curious to know how this would apply to someone whose heart rate is already very low.
Does it function similar to an adaptogen, and optimise heart rate, or would it lower it even further?
My resting heart rate is around 48-52bpm, almost doubling when I stand, and then dropping again when I exert myself. I can’t really get it up and keep it up, although I’m able to be more active than many, going for a gentle walk once a week and swimming in the sea..
I was also interested to note that heart rate is increased during sleep in ME etc. I was waking in what felt like an adrenalised rush and a thumping, racing, heart, but when O felt my pulse my heart rate was always slow. Is this common?
(I haven’t checked for a POTS diagnosis, and I only experience dizziness and brief blackouts when standing up sometimes, but I never faint. Here’s a little bit of annectotal info that some people may want to look into: my blood pressure was extremely low too, and a sales person for Himalayan pink salt told me that it lowers BP. I switched to sea salt and started giving Himalayan salt to my mom, who’s been taking meds for hypertension for years. Within 6 months my BP was up a bit and dizzy spells and blackouts had ceased. My mom’s BP went down to the low end of normal, and that was after stopping her high BP and cholesterol meds for 3 months. That was almost a year ago, and we’re both maintaining. My guess is there’s maybe something in the proportions and type of minerals in the salts.)
People who say they feel worse when on Ivabradine may need to increase vasoconstriction and/or increase fluid retention. When my daughter first started it (she has both an ME and a POTS diagnosis) she felt worse. She was also taking salt tablets and 2L water/day + liquorice root powder dissolved in coconut milk (similar fluid retention effect to fludrocortisone and a good thing to try before trying the steroid). Still, she felt worse on the Ivabradine–headache, chest pain, etc. I decided to find an herbal vasoconstrictor to see if that would counteract the HR lowering effects. Tried a couple things but found Swanson timed-release horse chestnut 22% aescin to be the thing that really worked for her. Like flipping a switch. Only that particular formulation worked. Once all three were in place–Ivabradine for lowering heart rate, liquorice+ salt+ water for increasing blood volume and horsechestnut for vasoconstriction–she started to markedly improve. Because of a recent flare she’s now taking midodrine instead of horse chestnut, but if things calm down she might go back. As for Ivabradine side effects, I’d say it has a really good profile. Main reported side effect is seeing light trails or halos! Daughter has been waiting for this to happen but no luck!!
My daughter having hsrx time adjusting tonivabrafibe yoo. Can I ask you how much salt, liquidise snd swanson horse chestnut was the optimum disease thst helped improve symtoms along with taking ivabrafine
Thanks
Hi Rachel–So long ago that i wrote this! Daughter is now well enough to be at university, though still on meds including Ivabradine. What helped at the start of taking Ivabradine was 1tsp liquorice root powder (I bought from Amazon) + 1/8 tsp salt– dissolve those in a little boiling water and then add to a glass of plant milk every morning. Plus this specific horse chestnut product taken 2x/day morning and night:
https://www.amazon.com/Swanson-Timed-Release-Chestnut-Aescin-Milligrams/dp/B004Z6503M
If you have a doctor you’re working with then they can prescribe midodrine instead of the horse chestnut. I just liked to try the herbal route first.
Daughter was/is also on salt tablets but I can’t remember the dosage.
Warning that all of this is to be avoided if your daughter has high blood pressure. I know POTS people usually have low, but very important not to follow any of this if she has a tendency towards high.
The ‘little brain of the heart’ certainly caught my attention. I used to have terrible trouble with near fainting episodes – one of the things I was most frightened by. During last summer I would have times where my heart would suddenly race, I’d feel nauseous and feel like I was going to faint. Standing still and talking could induce it to start and I found if I ate chocolate with dairy in it, that would definitely and repeatedly bring on these horrible episodes.
Now, in December, they are not happening and it’s been many months since I last had a near fainting, heart racing experience. I don’t take any medications for it and I found I had terrible problems with my heart rhythm (it became very irregular) if I added salt to my diet. However, what I am focusing on, in addition to my diet, is trying to spend more time in a parasympathetic state.
Recently I became very, very tired – I felt worn out. I was dealing with my long term dispute with the training college, (in which I had an extremely damaging psychological experience, which wrecked my health). They are following the fairly standard response of going on the defensive and undermining my credibility. Anyway, I feel I may be near to the end of this process and that is a relief. And the tiredness, I felt was actually healthy tired – I slept longer and more restoratively. I feel I am becoming more coherent and aligned.
However, this has also opened up a bit of a void and so I decided to join Niki Gratrix’s Emotional Detox Program, as I’m already joining in her free weekly Healing Circle. I’m not trying to ‘sell’ it to anyone, I’m just saying I think it’s helping me.
I came across Dysautonomia long before I came across ME/CFS and I think the autonomic nervous system is hugely powerful, alongside another massively powerful system – the immune system. I spend each day monitoring both these systems – it’s just something I take for granted now. My diet is central – if I eat/drink the ‘wrong’ thing there can be very serious consequences – so I try and avoid that! But I also feel I’ve made the most gains by trying to calm my sympathetic nervous system and live more in parasympathetic state. Easier said than done, I know…
I seem to be getting better and better and I’m not totally sure why, just as I didn’t know why I was getting worse and worse a few years ago. But if I make a guess – I’d say my immune system and sympathetic/parasympathetic got themselves into an almighty tangle and I am managing to unravel some of that mess and live a better life. 🙂
I was taking ivabradine with tramadol. Tramadol lowers my heart rate to 60 instead of 70. However I find it reduces the top heart rate standing by more than the resting heart rate lying, if you get what I mean? It doesnt reduce standing by 20 and resting by 20. I find it reduces standig by 35-40 and resting 10, on 5mg twice a day.
Does little for my m.e but is great for PoTS. I had PoTS before getting another viral infection and getting m.e.
How very interesting! Ivabradine has been a Godsend for me.
I had M.E for 6 years. I was displaying many PoTS symptoms which were always more pronounced first thing in the morning. My HR would regularly be 120-130 bpm just from getting out of bed (standing) and by the time I had had my breakfast and gone back upstairs my HR would be between 130-150bpm. My HR would increase on standing at any point of the day when standing (particularly if I tried standing and singing) but was far less predictable than early mornings. However, two tilt table tests both came back inconclusive i.e showed I was symptomatic of PoTS but not diagnostic.
Interestingly, I’ve had two attempts at Ivabradine. The first time, I started on a dose of 10mg and quickly increased the dose. I don’t recall side effects (unlike propranolol) but just didn’t make any difference so I came off it. About 18 months later a new Consultant wanted to try me on it again with the aim to combine it with other drugs. However, after keeping a symptom diary and a bit of experimenting, he put me on a low dose (2.5mg) in the morning and 5mg in the evening and the results were beneficial after just a few days but I couldn’t believe it would make so much difference! I gained so much lost energy back and could even sit up and do things in an evening again. I also realised that I was no longer getting PEM and managed to (very cautiously) do physically activities again to a level where I feel near normal again. I didn’t need to combine the Ivabradine with any other medication.
With symptoms of M.E and PoTS being so similar it’s often hard to tell what is the main culprit. I dismissed the notion of me having PoTS early on in my illness (I thought my palpitations were just typical of M.E until I started recording and noticing my morning pattern) but I often wonder if improvement could have come quicker if I started my current Ivabradine regime sooner or whether one of the reasons it didn’t work when I first tried it was that my M.E was too bad back then. For me, the mantra, less is more has certainly been true!
‘Standing and singing’ hastening the process Sarah – I can imagine that combination speeding up whatever is going on/not going on!
Cort, I can’t thank you enough for researching and publishing this article!! I’d never even HEARD of Ivabradine or it’s application for POTS. I’ve had POTS for 20 years, same with ME/CFS. Both are getting progressively worse. Propranolol helped somewhat to reduce my resting heart rate and my spiking heart rate upon standing, but it was affecting my circulation, turning my fingers and hands blue, like a Smurf! I’m also on Florinef, extra sea salt, HC for my Addison’s Disease, none of which seem to help all that much with POTS. I’ve got just about every single POTS symptom, severely, debilitatingly so and wicked heart palpitations 24/7. I’d given up hope of ever having finding help until I read your article and researched some more.
That being said, many of us are ‘done’ with doctors, me included. I’m now 66. Not to mention I live in rural Texas, far from any competent medical care, am isolated because of COVID, no one to even take me TO an appointment. I was Director of Quality Assurance for a Medical Equipment Manufacturing company before I had to retire. So, I, like many of your readers are not only capable of researching, but determining and accepting the risk factors of self-diagnosis and self-medicating for our own personal clinical trials. I’ve probably done it a dozen times and am none the worse for wear.
Ivabradine is only available in the U.S. via prescription so I again looked online. I’ve sent e-mails to InHousePharmacy, MyMexicanDrugStore, both which I’ve used in the past, to see if they would stock it. I haven’t heard back yet. However, Indiamart did reply with 2 different pharmacies who stock the 7.5 mg. Ivabradine. I realize that some may be hesitant to order from India because of quality concerns, but I’m willing to do so. I’ve ordered drugs and hormones from India in the past with no issues. Sometimes the easiest way to pay is via Western Union. One pharmacy Gana Overseas Trading quoted me about $80 for 100 tablets including shipping. They provided their bank information to do a transfer from Western Union to their bank. It’s safe and easy. They don’t list the 7.5 mg. on their website (they have 1000’s of other meds available) but you can e-mail directly and place an order. They have good Google ratings for the U.S. but have had shipments stopped and destroyed in the E.U. I’d rather use InHousePharmacy, which I’ve used for years with not a single issue, but I’m waiting a week or so to see if I get a reply.
People who are sick as us need options and I just wanted to let others know what works for me. Not recommending what may work for them.
Hello Stephanie, I’ve had to resort to DIY healthcare too, as there’s no help yet for me, from the medical profession. I’ve worked lots of things out – thanks to the internet and all the ME/CFS organisations, including Cort’s Health Rising – so I’m some sort of functioning much better now. I’ve found my background, working in mental health and social care at least gives me a bit of confidence to go looking and putting health plans together for myself. I also know that the trial and error approach is widespread in these areas, so I’m well accustomed to that too!
I wanted to post this ASAP in the hopes that other POTS sufferers see it. As you all know, getting Ivabradine in the U.S. is very problematic. First, it’s very expensive since Amgen (@ about $4600 a year) has the rights and it’s not recognized yet as a “POTS drug”. Plus, good luck finding a doctor who is familiar with the treatment or an insurance company that will approve it.
I just got off the phone with InHousePharmacy and they are going to stock it in 5 mg!!! I’m so excited. They’ve placed an order with their supply manufacturer for IVABID, which is the same as Ivabradine and it will be on their website in probably a week or so. Cost will be approximately $1.00 per tablet in the 90 tablet. Plus, they always have free shipping and you don’t need a prescription. I’ve used InHouse for years and never had a single problem and the shipments always clear customs here in the U.S. Most all their drugs come from Australia or New Zealand from major drug manufacturers. I’ve been researching the case studies and clinical trials done with Ivabradine and I am SO encouraged at the positive results they’ve seen and the dramatic decrease in POTS symptoms. No other drug protocol has worked for me. The recommended dose in these trials has been 2.5 mg. x 2 times per day. More, is apparently not better. Side effects seem to minimal at the small doses and if there are any, discontinuing it, they go away with no lasting repercussions. The pharmacist I spoke to at InHouse said they used to carry Ivabeat but stopped as people weren’t ordering it. I shared with him how it’s now being used for POTS and they are in hopes that more customers will be ordering it from them.
Thanks Stephanie for digging around and finding this out and passing it on. Good luck with it!
Thank you so much for this information Stephanie! I have been fighting with my insurance to get ivabrandine and was getting nowhere; I hadn’t even thought about international pharmacies until seeing your post!
For those (like me) who could get a prescription (in US) but no insurance coverage, I wanted to put this out there after my research as well:
-if your income is <88k/yr (more for each additional fam member) you can get ivabrandine in the US for free if insurance denies you, thru the Amgen Safety net foundation.
-if insurance approves you, get a Corlanor co-pay card and pay only $20/mo.
-if insurance denies you and you’re over income thresholds, you can use a certified Canadian pharmacy and send them your prescription to get the generic for about 22/mo (I used Northwestpharmacy.com).
I have been on Ivrabradine around a year and it helps me alot more then proprananol ever did. I was that kind that has to low blood pressure. I am super gratful for this drug
Hi all i was referred to a cardiologist by my gp, i was on 20mg propranolol 3x day, this helped a lot with adrenaline. It lowered my resting heart rate but when i stand it still jumps 50 or 60 beats and i feel symptomatic from that but not as bad. My cardiologist put me on ivabradine 5mg x a day with the propranolol and literally within days, i have energy, good sleep pattern. Good exercise tolerance so i am able to start reconditioning myself. My resting heart rate is around 50-55 but im ok with that. I feel i have a second chance in my life as i wS so debilitated, im so grateful . I still ensure ive increased my water intake that it is a good habit anyhow.
Congratulations Deanne! Continued good luck with this protocol and thanks for sharing that 🙂
@Deanne: my daughter has severe, has been on 10mg Propranolol for 1 year with small improvements – now taken off and put on 2×5 mg ivabradine. Only gotten to 1×5 after 1 week. If not improving – what combination of the 2 are you on?
@Deanne: my daughter has severe, has been on 10mg Propranolol for 1 year with small improvements – now taken off and put on 2×5 mg ivabradine. Only gotten to 1×5 after 1 week. If not improving – what combination of the 2 are you on?