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Ivabradine for the Lactose intolerant

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Peyt, Jun 30, 2018.

  1. Peyt

    Peyt Senior Member

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    Hi,
    I was all excited about trying out Ivabradine since my beta-blocker makes me very tired and increases the blood pooling in my legs , so I started it and on the 2nd day I started getting headaches. I had experienced this kind of headache before since it has a different feel to it that differs from the usual cluster headaches. This kind of headache I only get when I eat Lactose. So I got curious and checked the inactive ingredients and sure enough there is Lactose in it! https://www.rxlist.com/corlanor-drug.htm

    Ughhh… how can they do this to me?! :( I mean seriously, who uses Lactose as an ingredient with all these sensitivities going around??
    In fact, to test for SIBO (Small Intestine Bacteria Over-growth) which is a form of IBS , they use a breath test and a "Lactose" solution to find out if someone has SIBO.. that's how bad Lactose is...they first make you drink the lactose solution and then measure your breath for the next 3 hours for certain gases that bacteria in the gut makes when exposed to lactose to determine if one has SIBO! I can't believe the makers of Ivabradine would make such a wonderful drug and use Lactose as an inactive ingredient in it... Another ingredient they used is maltodextrin which many people are allergic to and gives skin rashes.

    Sorry for the venting, but I really thought I had found my cure... The beta-blocker I am on now (Atenolol) really makes me tired and that's the 2nd beta blocker I am trying with the same issue and I use to have a lot more energy... So I was really looking forward to Ivabradine since it does not effect the ephrin/ norepinephrine channel....

    Anyways, has anyone else come across this issue?
    Your thoughts and suggestions are appreciated.
    Peyt
     
    Last edited: Jun 30, 2018
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  2. Learner1

    Learner1 Forum Support Assistant

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    Yes, I have and it's extremely frustrating. Lactose is in most steroids, antihistamines, and many other drugs.

    I'm also allergic to corn and all of its many derivatives, plus gluten, which are all plentiful in the supposedly "inert" ingredients in many medications.

    One solution is to compound. I've had propranolol and naldolol compounded.
     
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  3. Peyt

    Peyt Senior Member

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    Do you think Ivabradine could be compounded?
    I asked the pharmacist and she said they can't do it there. Off course I was at a regular pharmacy,
    I will ask a compounding pharmacy and hopefully they can do it.
    This is certainly worth exploring, thanks so much for the idea!
     
    Last edited: Jun 30, 2018
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  4. Learner1

    Learner1 Forum Support Assistant

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    I don't know for sure, but most drugs can be compounded.

    From what I've gathered, there are about 4 large compounding wholesalers and likely some smaller ones. I've worked with 5 compounding pharmacies in 3 states, and have found they each source from different suppliers, so many times only one can source what I need.

    My process with my doctors and pharmacies is:
    1. Doctor wants to prescribe drug X for my problem.
    2. In front of the doctor, I whip out my phone and go to the NIH Pillbox website and enter drug X in the search box. (You can exclude an ingredient, like lactose, but the function doesn't work too well.)
    3. I review all of the manufacturers and formulations of drug X, looking through the inert ingredients lists to see if any of them is allergen-free. If there is, I ha3be the doctor write the prescription for the specific manufacturer, dosage, and firm of the medication. If not, I ask the doctor if there's any other drug I can take and then I repeat tbe process.
    4. If drug X is the drug, I tell the doctor I'll figure out where I can get it and let the nurse know.
    5. After leaving the doctor's office, I call my local compounding pharmacies and ask if they can compound drug X. Sometimes they tell me right away, other times, they need to contact their wholesalers to see if they can source the ingredients for drug X.
    6. Once I know they can make it, I call the doctor's office and have them send over a prescription for allergy free capsules of drug X.
    7. I also ask for the Universal Compounding Claim form for reimbursement.
    Many insurance companies and Medicare have chosen to limit compounds as they believe there's no advantage to compounded drugs over FDA approved drugs. It is possible to appeal - in my case, most FDA approved drugs can kill me due to my corn and milk allergies as they are such common ingredients in FDA approved drugs, so I am allowed to be reimbursed for the compounded drugs as long as they're considered "medically necessary," which typically involves my explaining what each drug is for to their nurse who is familiar with my case.
     
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  5. ryan31337

    ryan31337 Senior Member

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    Hi Peyt,

    I am lactose intolerant (diagnosed via lactose challenge & repeat blood tests) and take Ivabradine. Fortunately it doesn't cause me any major issues, perhaps slightly softer stools, if anything. I do have to avoid lactose in Cetirizine though, as that causes cramping and loose stools. I don't know why, perhaps its the quantities. I did look for lactose free Ivabradine but found no alternatives.

    Just as a side-note, its Lactulose used in SIBO tests, not Lactose. Lactulose is quite different because it cannot be absorbed by anyone.

    Ryan
     
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  6. Revel

    Revel Senior Member

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    @Peyt, I am also lactose intolerant but was able to take Ivabradine without any adverse reactions. My lactose issues show up as gut symptoms, though, and have never caused the headaches that you describe.

    I hope you are able to find a solution because Ivabradine was, for a time, very helpful in my case since I could not tolerate beta blockers. Unfortunately, it's effect eventually waned and currently I have yet to find anything that will adequately control my POTS-related tachycardia.
     
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  7. ryan31337

    ryan31337 Senior Member

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    How much do you take @Revel?

    I started on a small dose but have been told I can go to 15mg per day.
     
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  8. Revel

    Revel Senior Member

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    @ryan31337, I think I was started on 2.5mg once a day. On the first day, it had an amazing effect on my tachycardia, I thought that I had found my solution (and no side effects, other than a minor visual "aura").

    Over time, however, it ceased to work. I eventually was taking 7.5mg three times a day with no noticeable effect on my heart rate (as borne out by a repeat holter monitor test) and so I stopped taking it.
     
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  9. ryan31337

    ryan31337 Senior Member

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    Thanks @Revel, sorry to hear it stopped being effective for you.

    Apologies if I'm preaching to the choir but have you tried an antihistamine? I find 10mg Cetirizine in the morning really helps with the Tachy too.
     
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  10. Revel

    Revel Senior Member

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    @ryan31337, yes, went down the antihistamine route towards the end of my dabble with Ivabradine but I felt no positive benefits and so didn't continue. So disappointed that Ivabradine failed in the end because it really was a great drug for me, as someone who usually reacts badly to most prescription meds.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I am not certain but I think Ivabradine is not off patent in the US and only available as "Corlanor" and cannot be compounded (but I might be wrong so please still investigate @Peyt). I had once asked my former Cardio about Corlanor/ Ivabradine and that was his reply but he might have been wrong.

    I have never heard of this and thought compounded meds could not be reimbursed. I've been getting two meds compounded since 2015 :bang-head:. Do all compounding pharmacies (in the US) have this form?
     
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  12. Learner1

    Learner1 Forum Support Assistant

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    Newer meds that are still on patent are generally not available. I haven't checked ivabridine, but calling a compounder should provide that info. It looks like it was approved in 2015 by the FDA.

    It has cornstarch and lactose, and other corn products. Frustrating that the FDA approves drugs with major allergens.
    Yes, all compounding pharmacies should be able to provide it, or I can use a form from my insurance company's website. The key thing my insurance wants is every ingredient and it's wholesale cost. They make the process as difficult as possible to discourage people, but if you have allergies to common ingredients as I do, they recognize that we do need compounds.
     
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  13. Peyt

    Peyt Senior Member

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    Update!
    I started on Midotrone last week, and some of my headaches related to blood not reaching my head went away. So I got courageous and decided to try Ivabradine again. For the first 4 days everything was perfect. My heart rate on supine position was getting as low as high 60's and standing about 105-110 and I am sure that would have improved further if I had continued. (with no meds my supine is around 90 and standing goes up to 150's)
    But again yesterday I had a nasty headache... so I am sure this has nothing to do with blood not reaching my head and it's the kind of headache that comes from food sensitivity(either the lactose or the maldextrone in Ivabradine).... so sad... I was so hopeful that my life is going to change... now I have to go back to beta-blockers which make me so tired and my heart rate come to about 70's on Supine and 130's standing and that's on a low dose beta blocker. But I am so tried and have lots of blood pooling to the legs with beta blockers that might as well not take them.... I guess I can ask about calcium channel blockers the next time I see my doctor... but I have a feeling my heart would not be as efficient as it is with Ivabradine.
     
  14. Peyt

    Peyt Senior Member

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    Would anyone know if I can get Ivabradine from a compounding Pharmacy in Canada? (I am a US resident)
    Does anyone know if Ivabradine is on a patent in Canada as well?
    Do they even have compounding pharmacies in Canada? It would cost an arm and a leg I am sure but I just want to try it once to see if I get the same headache....
     
  15. Learner1

    Learner1 Forum Support Assistant

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    In Canada, it was granted its notice of compliance on December 23, 2016 under the name Lancora.

    In Europe, the EMA first approved it in 2005.
     
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  16. Peyt

    Peyt Senior Member

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    Thanks so much,
    It sounds like it might be easier to get it in Europe. Any suggestions which country may take a prescription from a US doctor? Funny I am writing you this message from Italy right now... I would love to be able to get it here while I am here. I will be here for another week.
    Any guidance would be appreciated.
     
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  17. Peyt

    Peyt Senior Member

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    @Learner1,
    Any idea what it's called in Europe?
     
  18. Learner1

    Learner1 Forum Support Assistant

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  19. Peyt

    Peyt Senior Member

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  20. Learner1

    Learner1 Forum Support Assistant

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    I have no idea, but please report back, will you? I may be desperate some day!:rolleyes:
     
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