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

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Jesse2233, Dec 28, 2017.

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How has ivabradine affected you?

  1. Significant improvement

    0 vote(s)
    0.0%
  2. Minor improvement

    3 vote(s)
    11.1%
  3. No change

    2 vote(s)
    7.4%
  4. Minor worsening

    3 vote(s)
    11.1%
  5. Major worsening

    0 vote(s)
    0.0%
  6. I have not tried ivabradine

    19 vote(s)
    70.4%
  1. Jesse2233

    Jesse2233 Senior Member

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    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):

    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.
     
    Last edited: Dec 29, 2017
    ahimsa likes this.
  2. Revel

    Revel Senior Member

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    @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:).
     
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  3. AdamS

    AdamS Senior Member

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    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.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    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.
     
  5. Jesse2233

    Jesse2233 Senior Member

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    @Revel interesting and sorry to hear it didn’t last, I’d say that counts as no change

    @AdamS how long were you on it?

    @Gingergrrl makes sense, and given your MCAD it likely would’ve been a bandaid at best
     
    Last edited: Dec 29, 2017
  6. Jesse2233

    Jesse2233 Senior Member

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    A woman from the UK with severe POTS and comorbid EDS shares her positive experience

     
    Last edited: Dec 28, 2017
  7. Jesse2233

    Jesse2233 Senior Member

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    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:
    @Hip @halcyon any thoughts?
     
  8. Hip

    Hip Senior Member

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    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 likes this.
  9. Jesse2233

    Jesse2233 Senior Member

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    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.
     
    Last edited: Dec 28, 2017
    Murph likes this.
  10. Jesse2233

    Jesse2233 Senior Member

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    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?
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    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.
     
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  12. Jesse2233

    Jesse2233 Senior Member

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    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
     
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  13. Hip

    Hip Senior Member

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    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.
     
  14. Jesse2233

    Jesse2233 Senior Member

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    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).
     
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  15. Hip

    Hip Senior Member

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    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.
     
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  16. Jesse2233

    Jesse2233 Senior Member

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    @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
     
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  17. Revel

    Revel Senior Member

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    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.
    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
     
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  18. Jesse2233

    Jesse2233 Senior Member

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    @Revel how high was the maximum dose you went to? 10mg?
     
  19. Jesse2233

    Jesse2233 Senior Member

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    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
     
  20. Revel

    Revel Senior Member

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    @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.
     
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