New Drug, New Class Of Drug Even--not Yet Available In Us

[lthomas521]

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

[Sophia3]

Not sure what this means...is this a pay site??

All I got was one sentence about this drug or links to other stuff. I am confused.

Also, if it ain't in this country and ESTABLISHED with a safety record, it means nothing to most of us. Can take years to get approved.

But if you could maybe cut and paste whatever you wanted us to read, it may unconfuse me.

EDITED DId a google and found this link and some others.

http://www.medicalnewstoday.com/articles/34139.php

Sounds interesting but the visual side effects with the eye worried me as I have issues with my eyes anyway..and having 20/300 vision on top of the other stuff doesn't help.

[Maxine]

I don't think a abstract is available. If you can get it to copy and paste perhaps---???

Here's some other links...... Some are newer abstracts of interest, and some have some link to the drug ivabradine

I have requested the full text to this article.

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

http://circ.ahajournals.org/cgi/content/full/111/21/2734

Although these articles have maybe a link or two to the new medication, there are several free texts linked to the article just above. Some are newer, and I don't know if they have been seen yet.

http://molpharm.aspetjournals.org/cgi/content/full/69/4/1328

http://bja.oxfordjournals.org/cgi/content/full/97/2/196

http://www.actabiomedica.it/data/2007/2_2007/russo.pdf

http://jada.ada.org/cgi/content/full/137/4/488

http://www.pubmedcentral.nih.gov/articlere...bmedid=16451297

http://www.pubmedcentral.nih.gov/articlere...bmedid=16943900

http://eurheartjsupp.oxfordjournals.org/cg...t/7/suppl_H/H33

http://www.acc.org/qualityandscience/clini.../V_specific.htm

http://www.healthboards.com/boards/showthread.php?t=519935

Maxine :0)

[biatecki]

I believe some of our UK friends have some experience with this new drug ..I personally would be very greatful for any info they could provide for us , I have heard that it is very effective for chest pain and has few side effects ....

Margaret

[Ernie]

Thanks Maxine and LThomas for the great research you did.

[yogini]

This has come up in the forum before. Here is a link to the search.

http://dinet.ipbhost.com/index.php?act=Sea...lite=ivabradine

According to some of the old posts, it is available in the US. If anyone has a way of finding out the true status, I would be interested. If this is truly a drug that regulates HR without lowering BP, sign me up!

Many of us here get discouraged that not enough treatments are being developed for POTS. But it seems that slowly but surely we keep finding new drugs, whether intended specifically for us or not. There is hope!

[Sophia3]

Thanks for the links.

Interesting it mentioned Mayo discussing it 3 years ago.

but as somebody else said, sometimes my tachcardia is NEEDED to over compensate with low BP..sot it keeps me upright but gives me warning I need to sit and or recliine or elevate feet.

If we take a med to prevent tachycardia, could that CAUSE fainting in POTS pts like me, who stay almost chronically pre syncope?

I also wonder, does this med work on the electrical system in the heart, which no doubt is messed up in many of us.

There may be very valid uses in this for many patients but not all of us.

Also, like some guys very old POTS site from years ago said, giving us a pill for a constantly fluctuating system is not always helpful.

Like for me, I change positions and both BP and HR change. Yet I lie STILL and BP can be low and my HR will drop 40 or more points than when standing or doing whatever started the racing heart. Complicated things to figure out for sure.

I also worry about the CEREBRAL HYPOfusion..would this drug worsen that issue.

[flop]

Ivabradine (brand name = Procorolan) has been available in the UK for at least 18 months.

I looked up a lot of information last summer when a member on here asked about using Ivabradine, I'll post what I can remember about it. A few years ago I dated a drug rep and although we split up when he moved away to get a promotion, I am still friends with a lot of the other drug reps that he introduced me to. I did chat to the Procorolan rep about using the drug for POTS but as there had been no research in POTS patients he said the company couldn't give any advice. If a doctor wanted to prescribe Ivabradine for anything other than "stable angina in patients intolerant of beta-blocker" the doctor would have to prescribe it "off-licence" and take the risk of any problems himself. In the UK most doctors won't prescribe meds "off-label". I've had enough problems trying to find GPs who will prescibe Florinef for me - it is only licenced for Addison's disease which I don't have.

It is a completely new type of drug for controlling heart rate and preventing symptoms of angina.

Most angina patients are put onto a beta-blocker which slows the heart rate and therefore makes the heart work less hard, which then means the heart needs less blood delivering to the muscle. As less blood flow is needed in the coronary arteries, the narrowed arteries can supply enough blood without the heart being starved of blood causing angina pain.

(That bit just explains why slowing the heart in angina is good, doesn't apply to most POTS patients).

The problem with using beta-blockers for angina is that there are groups of patients who can't tolerate beta-blockers. There are beta receptors in blood vessels - beta-blockers cause the blood pressure to drop, there are beta receptors in the lungs - beta-blockers can cause bronchospasm (like asthma). Also beta-blockers don't mix well with some tablets that angina patients might be on already.

A pharmaceutical company set about to make a drug that would specifically slow down the heart rate but wouldn't "work" in other areas of the body, so that it would be suitable for patients who couldn't tolerate a traditional beta-blocker.

The looked carefully at the conducting system in the heart. The found that there was a special channel in the sino-atrial node (the hearts own natural pacemaker) called the "I_f" channel. Unlike the beta receptors which are found throughout the body, the I_f channel is only found in the sino-atrial node and in the retina of the eye.

By blocking the I_f channel they could selectively slow down the heart rate without causing all the other side-effects.

The only major side-effects reported are visual disturbances, often halos appearing arround bright lights. Some people in the trials learned to put up with this, but in those who decided to stop the drug the visual effects went away again.

Would it help in POTS?? The effect of Ivabradine would be to slow down the heart rate, hopefully preventing/reducing tachycardia. I don't know if just slowing down the heart rate would reduce POTS symptoms. It would seem logical that it would reduce palpitations caused by sinus tachycardia. However the standing tachycardia is thought to be in response to low BP, the drug would block the fast HR but the low BP would still happen - if the dizziness etc is caused by the low BP then this drug might not change those symptoms.

I can't remember who it was that was taking this med, possibly Persephone? If anyone has tried it please share your experiences!

Flop

[Lukkychrm42]

Hiya!

i remember that Persephone was the one taking it- looks like she hasn't been around much, but from what she's said, she's doing great! I wasn't sure if it was due to her med combo or luck/timing/lifestyle or what, but it does look like an interesting option.

Obviously not all drugs work for all POTS patients. And obviously most of us are precluded from using at least one of them for whatever reason.

Of course, since medicines aren't necessarily universally available, you sometimes have to juggle a bit to see what you can come up with.

For example, melatonin isn't available in the UK. I also can't get Proamatine brand, betaxolol, or Adderall.

I'm about to give up the Adderall because it's wreaking havoc with my mental health- so we'll see what else is out there!

I'll have to check out the links, but I wonder about its use versus BBs? Especially since many of us are on the BBs to keep the HR down. And would it have the same effect of lowering BP too?

If it's not yet available in the US, sure it might be years before the pharmacies carry it, but its availability elsewhere could mean that it's got potential for use in studies, if not already, and IF there are positive effects, then lobbying the cause might get FDA approval faster. (If ok obviously. I mean the FDA doesn't exactly have a clean track record, approving harmful medications.)

Better get back to studying!

[Orla]

Just a quick reply tonight. I have been on Procoralann (Ivabradine) for over a year now. The only side effect that I get is a biazarre, but not a painful or scary, thing when I go from a dark room at night to a room with a light on.

For a little while (a minute or two at most) it is like as if I can see lines of flowing light in front of me. It is not quite as bad as it sounds! Acutally as side effects go, this is mild and even sort of entertaining.

This thing with the lights only lasts a little while until my eyes adjust to the light. It seems to only really happen if I have been asleep and wake up and switch a light on in the middle of the night - when it is dark outside. I can see ok enough not to have an accident. If you had to drive you would need to make sure that your eyes had adjusted properly, though it never lasts long for me and it would be gone by the time I would be dressed. I don't drive myself.

I had tried Half-Inderal LA before and felt worse so gave it up.

It's late here now (I am in Ireland) so I will write out more on this again hopefully tomorrow,

O

[Mrs. Burschman]

Welcome, Orla! Thanks for letting us know. We appreciate it.

And we're happy to have you here. As always, we wish you had no need for it, but oh well ...

Amy

[Maggy]

Hi

I am from the u.k and was put on Ivabradine about 8 months ago, the drug does do the job that most pots patients want and that is to lower the heart rate without lowering the blood pressure.

I was doing really well on it to start with but after about three weeks the visual disturbances were so bad that i struggled to continue with every day life.

I was finding night times were the worst when the light was starting to dim, it got so bad that i was seeing two or three of everything all the time and if i turned my head the original vision would follow me around the room.

I did continue to take the meds because it was doing such a good job of reducing my heartrate and i was still able to stand without my blood pressure dropping, but after a few more weeks the visual disturbances were so bad even in the day time it was unsafe to continue taking the Ivabradine.

Everyone reacts different so it is always worth trying it, but it certainly is a new drug for this condition and my consultant said it was the first time he had heard that it was being used as a trial for pots.

Good luck to anyone else who can take it.

Maggy x

[Orla]

Hi Maggy, sorry to hear about your reaction to the drug. Hope that doesn't start happening to me! I'm probably safe enough though seeing as I have been on it so long.

I am on 5mg twice a day. It does seem to control the heart rate on standing (it is not totally normal but a lot less high that it would otherwise be, I could go up to 7.5mg twice a day), and takes the edge off a little (symptoms wise) when I stand, initially anyway, but unfortunately it has not had as much an impact as I would like on my overall health.

I still don't like prolonged standing as I still feel uncomfortable. Also I don't feel that different overall, though I have to stress that I also have ME (called Chronic Fatigue Syndrome in the US - though strictly speaking the diagnostic criteria for both are different, so not everyone diagnosed with CFS will have what would be recognised as ME). ME is probably my main problem, with the POTS as a related one brough on by it, so it was always likely that any treatment for POTS was only going to be of limited effectiveness anyway as it only tackles part of the problem.

I had thought my exercise intolerance would improve somewhat on the drug, or at least when walking, but this has not happened.

One weird thing though, I think it may have helped my sleep. I am not sure about this, but I noticed the odd time when I forgot to take my afternoon tablet that I had more difficultly getting off to sleep than when I did take both tablets. I cannot be absolutely sure about this, as I would need to experiment more to find out. I am taking a sedating anti-depressant at night to help with sleep also, but still feel that the Procoralan has helped a bit with the sleeep as well.

Since I have gotten sick I have had a bad problem with my sleep pattern. I often cannot sleep until 3am or later. I have taken many things and tried many things to get to sleep earlier, but even though I have had limited success with some things the pattern always tends to always revert back to sleeping from about 3-4am to 11-12pm and sometimes much worse.

The few times I forgot to take Procoralan it took me longer than usual to get to sleep, though I have only forgotten a few times, and my sleep pattern is a bit changeable so I cannot be absolutely sure of a link. I may be going for some tests in a few months so might have to come off the Procoralan for a shortwhile, so that will give me a proper chance to see what happens with my sleep when I am not taking it.

So no magic wonder cure I am afraid, but possibly worth trying if people can get it and couldn't tolerate Beta Blockers,

Orla