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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Ivabradine / Corlanor - 80% Response Rate in POTS Patients (Nov / 2017 Study) + Poll

How has ivabradine affected you?

  • Significant improvement

    Votes: 0 0.0%
  • Minor improvement

    Votes: 4 13.8%
  • No change

    Votes: 2 6.9%
  • Minor worsening

    Votes: 3 10.3%
  • Major worsening

    Votes: 0 0.0%
  • I have not tried ivabradine

    Votes: 20 69.0%

  • Total voters
    29

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
A recent retrospective study of 49 POTS patients showed positive results for ivabradine (a funny channel antagonist that decreases heart rate and the amount of cardiac oxygen consumption):

Forty-nine patients (47 females, 95.9%) received ivabradine. The average age was 35.1 ± 10.35 years. The most common symptoms were palpitations and lightheadedness and both improved significantly, 88.4% and 76.1% response rate, respectively. A total of 38 patients reported improvement in their symptoms. In addition, ivabradine resulted in an objective decrease in sitting and standing heart rate (78.1 ± 10.7 vs 72.5 ± 7.6, P-value: 0.01) and (107.4 ± 14.1 vs 95.1 ± 13.7, P-value: < 0.001), respectively, with no significant change in blood pressure.

http://onlinelibrary.wiley.com/doi/10.1111/pace.13182/full

There is also an ongoing clinical trial (RCT) for the drug's use in POTS being conducted by Dr Pam Taub, M.D. at UCSD: https://clinicaltrials.gov/ct2/show/NCT03182725

There are quite a few blogs and Facebook posts from POTS and dysautonomia patients calling ivabradine their "personal miracle drug" or their "magic bullet" that gave them their life back. This seems to coincide with what my POTS cardiologist told me. There also seems to be a large cohort of patients who have not heard of ivabradine.

Of course many, many POTS symptoms overlap with ME/CFS, and many patients carry both diagnoses.

I should note that ivabradine is unlikely to treat the cause of a POTS patient's condition and as it's likely just treating a downstream symptoms. That said if it restores someone to functional status or prevents downstream vascular or neurological damage, then it's worth taking.

I should also note that a subset of patients have adverse reactions to ivabradine, and many cardiologists (including mine) recommend POTS patients try it in their office before using it at home.

My personal experience with ivabradine was positive, but I stopped taking it to better assess ongoing immune modulating treatments that have a better chance at addressing potential core etiology.

I've included a poll to see how people here have reacted. Comment below with any details.
 
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Revel

Senior Member
Messages
641
@Jesse2233, I am not sure which option to choose?

I was prescribed Ivabradine several years ago, after failing to tolerate every other POTS medication recommended.

At first, it was fantastic. I had no side effects (other than the "aura", which wasn't unpleasant, just weird and it wore off after a few days) and after one dose I felt able to take my dogs for a short walk, which felt like nothing short of a miracle at the time.

However, as the weeks went by, it became increasingly less effective. The dose was raised to maximum, but I felt that it was no longer controlling my tachycardia and I was basically back to square one activity-wise. My consultant did not believe that it had ceased to work for me, insisting that there was no medical reason why it should tail off and he ordered a 48 hr monitor test.

The test showed that while my heart rate did not go above 160 bpm at any point, the tachycardia had reverted to being uncontrolled and constant.

I found that if I took Ivabradine daily it had little to no effect, but had slightly more "kick" if taken occasionally. So I began to reserve it for when I needed to leave the house in the hope that it at least created a ceiling that my heart rate stayed below.

I rarely leave home nowadays, and use a wheelchair when I do, which is less physically taxing on my body, so the Ivabradine is currently gathering dust on my "failed drugs and supplements" shelf (it's in good company :rolleyes:).
 

AdamS

Senior Member
Messages
339
I had a theraputic trial for POTS and while the Ivabradine definitely kept my heartrate more stable (and a bit lower) it just made me more tired/lethargic so I stopped taking it.
 

Gingergrrl

Senior Member
Messages
16,171
Haven't tried it b/c my cardio (same cardio as Jesse's) ultimately felt my BP was too low plus it was new to the US (at that time, only as "Corlanor") and had dye(s) in it and no generic and he was afraid I'd be allergic to it. So I stuck w/Atenolol & Midodrine for POTS.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
This is a fascinating studying from China, especially in the context of the Ramsay / Richardson / Hyde / Chia research lineage. Ivabradine helps coxsackie B3 myocarditis in the following ways beyond its effect on the funny channel:
Ivabradine attenuated myocardial lesions and fibrosis, inhibited NO synthesis by iNOS, and decreased the production of TNF-α and IL-6. These results show that ivabradine has a therapeutic benefit in murine CVB3-induced myocarditis. The beneficial effects of ivabradine in viral myocarditis are partially mediated by the inhibition of both the production of proinflammatory cytokines and the synthesis of NO by iNOS

Full study here: http://sci-hub.la/10.1016/j.bbrc.2012.12.147

@Hip @halcyon any thoughts?
 

Hip

Senior Member
Messages
17,824

It would appear that ivabradine reduces heart damage during CVB myocarditis by reducing the inflammatory effects of the viral infection. That does not necessarily mean there is any antiviral effect. There are a few other drugs I have seen that protect the heart from CVB in this way, such as losartan.

I think this study also refers to acute CVB myocarditis, ie, in the initial phase of the infection, where there are lots of enteroviral particles. So the anti-inflammatory benefits of ivabradine may only apply to acute CVB infection.

ME/CFS is more like chronic CVB myocarditis, the phase after the acute heart infection (and its viral particles) has disappeared, and you only have a non-cytolytic enterovirus infections left in the heart muscle, but no viral particles. The non-cytolytic infection is of course this viral infection comprising stands of naked viral RNA that live inside cells on a long term basis.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
A round-up of 28 Facebook comments from POTS patients regarding ivabradine.

I've color coded positive and negative/neutral responses.

Positive: 23
Negative / neutral: 5
Overall response percentage 82% (matches Dr Mohammed Ruzieh's study almost perfectly)

However, keep in mind that there may be a positive reporting bias and neither Dr Ruizeh's study nor the comments below are substitutes for an RCT or your own experience.

Also keep in mind that some of these patients may not qualify for an ME/CFS diagnosis (although many likely do)

Edit: I have deleted the collated comments because, even though they were anonymous, I do not want to violate the privacy of a closed FB group.
 
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Jesse2233

Senior Member
Messages
1,942
Location
Southern California
ME/CFS is more like chronic CVB myocarditis, the phase after the acute heart infection (and its viral particles) has disappeared, and you only have a non-cytolytic enterovirus infections left in the heart muscle, but no viral particles. The non-cytolytic infection is of course this viral infection comprising stands of naked viral RNA that live inside cells on a long term basis.

Thanks @Hip. Even though the study was conducted during the acute viral phase, might the non-cytolytic RNA particles trigger similar inflammatory reactions in cardiac tissue that are ameliorated with ivabradine?
 

Gingergrrl

Senior Member
Messages
16,171
Hi Jesse, it sounds like the anecdotal reports are purely re: lowering tachycardia (which Atenolol does for me) but doesn't mention other symptoms like shortness of breath, chest pain & muscle weakness that never budged until I did IVIG and Rituximab. In my case, I don't think it would add anything beyond what the beta blocker is doing and either choice would just be symptom relief.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Hi Jesse, it sounds like the anecdotal reports are purely re: lowering tachycardia (which Atenolol does for me) but doesn't mention other symptoms like shortness of breath, chest pain & muscle weakness that never budged until I did IVIG and Rituximab. In my case, I don't think it would add anything beyond what the beta blocker is doing and either choice would just be symptom relief.

Yes I agree although I have heard some say ivabradine helped with shortness of breath and chest pain (assuming as a result of lowering HR). But in cases with the issues are mast cells or autoantibodies it's definitely not getting at the root
 

Hip

Senior Member
Messages
17,824
Thanks @Hip. Even though the study was conducted during the acute phase, might the non-cytolytic RNA particles trigger similar inflammatory reactions in cardiac tissue that are ameliorated with ivabradine?

It's possible, but whether those anti-inflammatory effects would ameliorate ME/CFS is another question.


Do you get significant symptoms from your POTS, Jesse2233?

Although I satisfy the diagnostic criteria for POTS (my heart rate increases by around 25 to 40 bpm on standing), I don't get any specific symptoms from standing up. Thus it is possible my POTS is contributing to my overall ME/CFS symptoms (since POTS just on its own can cause ME/CFS-like symptoms); but I am not able to separate and distinguish the POTS symptoms from the ME/CFS symptoms.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Do you get significant symptoms from your POTS, Jesse2233?

Hey @Hip, yes I think I do. Standing and walking my shortness of breath and lightheadedness is much worse although the increase in HR is only 30-50 (and not 100+ like some severe POTS patients).

I sometimes wonder though how much of my condition is better described by POTS than ME/CFS. I don't have any immune / malaise / flu-like feelings (except after treatments like IVIG and photopheresis), and my post exertional worsening is more due to increased shortness of breath and lightheadedness than to perceived feelings of cellular fatigue or immune activation. I have no pain of any kind or muscle weakness, and cognitive limitations seem to be due more to lightheadedness than a decrease in processing power / complexity (if that makes sense). There is a degree of sensory sensitivity though.

The one symptom that doesn't quite fit the primary cardiovascular POTS picture is my constant muscle twitching though I suppose this could be the product of hypoperfusion (either to those muscles or to the brain).
 

Hip

Senior Member
Messages
17,824
I sometimes wonder though how much of my condition is better described by POTS than ME/CFS.

Prof Julia Newton was floating a tentative hypothesis a few years ago that one third of patients diagnosed with ME/CFS may in fact just have POTS, which is more treatable. See this article:

ME: one third of patients 'wrongly diagnosed' - Telegraph

However, I have not heard any more about this idea since then, so I am guessing her hypothesis did not work out. But it would certainly be worth exploring the idea that a significant percentage of your symptoms come from POTS rather than ME/CFS.

Have you tried the simple POTS treatment of increasing salt intake and water intake? Different doctors have different views on how much salt, from 3 grams to 15 grams of salt daily. I have tried up to 6 grams, but without much improvement in symptoms. For this to work though you need to also increase your water intake, drinking an extra say 2 liters a day.

The salt basically helps keep this extra water you are drinking in your body, which then increases blood volume. You can actually measure the increase in water retention, as your weight will go up on a bathroom scales.



Do you know which POTS subtype you are: low flow POTS (similar to hyperadrenergic POTS), normal flow or high flow POTS (similar to neuropathic POTS)? Some POTS treatments are targeted at the particular subtype.

Diagnosing subtypes is hard though.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
@Hip interesting... the line between ME/CFS and POTS seems to be quite blurry. Both have exercise intolerance, brain fog, fatigue, muscle twitching etc, but I imagine the distinguishing feature is PEM.

Whether PEM is defined as....
  • Immune activation / flu-like malaise different than one's normal day to day symptom picture or...
  • Delayed mild to moderate worsening of ongoing symptoms after atypical exertion...
...would probably make the difference for me.

The core etiology (autoimmune B, T, mast cell / chronic pathogen / autoinflammatory) is likely similar in post infectious cases but obviously manifests in different biological ways with profound implications for functionality and treatment.

I would guess I'm normal flow neuropathic post-viral POTS with moderate to mild severity
 

Revel

Senior Member
Messages
641
I have heard some say ivabradine helped with shortness of breath and chest pain
It helped me initially with these symptoms and allowed me to walk normally with good posture, unlike my usual head down, shoulders rounded forward, chest "closed" stance. Gutted that it didn't work long term.
Prof Julia Newton was floating a tentative hypothesis a few years ago that one third of patients diagnosed with ME/CFS may in fact just have POTS, which is more treatable
Both my GP and POTS consultant were convinced that all of my symptoms could be explained by a POTS diagnosis, until no medication was found to help.

Now they agree that my diagnosis includes ME, and I have basically been left to fend for myself with nobody overseeing either condition. I was dropped from the POTS clinic because I refused to attend a certain CFS clinic in Crawley's neck of the woods, for a 6 week course of CBT which would apparently "fix" my ME sufficiently to allow the POTS medication to work. How I laughed . . . at which point my consultant said, "Well, it won't work if you don't believe in it!". o_O
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
The salt basically helps keep this extra water you are drinking in your body, which then increases blood volume. You can actually measure the increase in water retention, as your weight will go up on a bathroom scales

I’ve tried increasing salt via salt tabs but not quite to the levels you mentioned. Using a scale to measure water retention is an interesting idea
 

Revel

Senior Member
Messages
641
@Jesse2233, I started slowly (as I am generally quite drug-reactive) on 2.5mg once a day, and even this low dose initially had a very strong positive effect.

When last taken daily, I was on 7.5mg three times a day with no noticeable effect on my symptoms.

I had two 48 hr monitor tests, one shortly after commencing Ivabradine and one after I complained that it no longer seemed to be working. The difference between the two resultant graphs was very obvious and my consultant could not explain why the drug ceased to be effective for me.

He didn't outright say this, but I got the impression that he thought I was being held back psychologically by my ME, hence his insistence that I have CBT (apparently, I must be causing my tachycardia with the power of my mind, even in my sleep). Since I was not compliant with his request, he took this as a sign that I did not wish to recover and therefore he could no longer work with me. I think it was easier for him to ignore me than admit failure, after the false promises he made to give me back the life I once had.