SarahA33 Posted January 16, 2015 Report Share Posted January 16, 2015 HELP! I desperately need this medication.. very much so that I cant even list all the reasons why. My dr at CC said in Jan it came up for approval by FDA. But theres a lot of red tape.I go back to CC Thurs, 1/22 , so he will hopefully have a more definitive plan off attack as to when I'll be beginning the mediciation.I need your help my friends, in the US, do any of you know the FDA RXing Rules or how I can access them? This medication could truly turn my life around.ANY help that can be offered is very much appreciated. Thanks In advance!Sarah Quote Link to comment Share on other sites More sharing options...
helenhz Posted January 17, 2015 Report Share Posted January 17, 2015 I was able to order it online from a Canadian pharmacy with my doctor's prescription. It cost me about $45 a month. Unfortunately, it never really worked for me and I stopped taking it awhile ago. Hopefully, you'll have better success. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 17, 2015 Author Report Share Posted January 17, 2015 Helen,How exactly did that process work? You mailed/faxed the Canaidian pharmacy your script and your payment and they sent you the meds?I don't know how any of this works, Ive been searching the forums and have found some other members were happy with one especially, northwest pharmaciesThank You for replying Sarah Quote Link to comment Share on other sites More sharing options...
corina Posted January 17, 2015 Report Share Posted January 17, 2015 Sorry it's so hard for you to get. We have it here in Europe (The Netherlands) and get it on prescription. I haven't tried it myself but heard good stories. Hope you will be able to try it and that it will work wonders for you! Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 17, 2015 Report Share Posted January 17, 2015 Sarah,I tried everything I could think of on the fda.gov site and could only find things from last year regarding the fda fast tracking the approval process but nothing showing that it has been approved. Are you sure it's actually approved? It's unusual not to be able to find a listing on that site for an approved drug. Quote Link to comment Share on other sites More sharing options...
helenhz Posted January 18, 2015 Report Share Posted January 18, 2015 I went to the Northwest Pharmacy's website, found Ivabridine and scanned a copy of my prescription to them as part of the checkout process. It takes a number of weeks for the medication to arrive because it has to go through customs first. Quote Link to comment Share on other sites More sharing options...
Raisin Posted January 18, 2015 Report Share Posted January 18, 2015 Oh boy Sarah! Sounds promising! Sorry I have been off the radar a bit but I am still sending you good wishes. Quote Link to comment Share on other sites More sharing options...
nomdeguerre0850 Posted January 19, 2015 Report Share Posted January 19, 2015 I went through a company in India who also required a prescription. Ivabradine has and continues to help me. I've been taking it for about two years. The difficult part is getting a physician to write a prescription for a medication that is not FDA approved and also for POTS, which is an off-label use even in Europe. I know it has been fast tracked by the FDA and given priority review, I do not believe it has been approved as yet.We should hear the herald of trumpets in our community when this happens. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 20, 2015 Author Report Share Posted January 20, 2015 Corina, I keep forgetting to ask you this.. Would you mind sharing how you get you get your Octreotide injections covered/approved by insurance every couple of weeks? Is the diagnosis like Carcinoid, something similar or POTS or is that considered off label? Please PM me if you'd rather. I'd appreciate it, thank you.Hey Katy. Thanks for doing some leg work. Can you remember any of the sites that you visited? I've been trying to do some research myself. I went directly to the source and tried calling the FDA yesterday, about all 85 numbers I found for them, and they were all closed in observance of MLK Day. I have some time this AM so I will be making some calls againHelen, Thanks for doing that. May just be easier until the FDA lets up and makes things clearer to just do it this way.Nom, Hi there. I thought the same thing... trumpets would be sounding from our rooftops that ivabradine was finally available here in the US! This is all that I know, my dr told me last week it was on fast track approval in the United States as of January 1st, 2015 and that he's pretty sure it's available to patients right now. What he is not sure of are the prescribing policies from the FDA currently. That's where all that red tape comes in. I'll know more in the next few days hopefully. Thankfully I can obtain it through Canada if needed thoughIm really glad to hear that its helped you. Did you have any side effect from it?Shauna, thanks for being encouraging as always Thank you everyone!Sarah Quote Link to comment Share on other sites More sharing options...
nomdeguerre0850 Posted January 20, 2015 Report Share Posted January 20, 2015 No side effects that I'm aware of.It's often hard to know what's going on or what's causing what because of the myriad of weird symptoms that get worse and then a bit better and then a bit worse on and on and on.... Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 20, 2015 Report Share Posted January 20, 2015 Sarah,Hi. I was searching the fda.gov site only. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 20, 2015 Author Report Share Posted January 20, 2015 Nom, I Understand what you are saying about trying to relate symptoms, side effects, or rather just something new that may have come about as a result of our illness. Katy, Thanks for going out of your way to try.. I really do appreciate it. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 21, 2015 Report Share Posted January 21, 2015 Good luck at your appointments! Quote Link to comment Share on other sites More sharing options...
corina Posted January 21, 2015 Report Share Posted January 21, 2015 Sarah, I'm in The Netherlands that may be the difference, I've heard from more US members they couldn't get it covered. Octreotide is on the What Help's List here which makes me think it is a "common" med POTS-wise (not really common sorry I'm too brain fogged to explain any better but I think you'll understand what I mean). That might be helpful info for your insurance to work with (or so I hope). I know that in the UK people get it covered too! Good luck if ever you are trying! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 21, 2015 Author Report Share Posted January 21, 2015 Thanks Katy and Corina! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 12, 2015 Author Report Share Posted March 12, 2015 Hey all!Wanted to take a minute to give an update on the lastest I've heard regarding Ivabradine in America. Amgen Phamaceuticals required the United States rights to the Drug a couple years back, and most recently Amgen was given Priority Review for Ivabradine to be Fast tracked for Treatment of Chronic Heart Failure.So, as it still goes for those of us with POTs, IST, SVT, According to my cardiologist - 1) He writes an actual paper script. 2) We find a reliable Canadian Pharmacy, set up an acct and fax/mail the m our script with the payment.I'm going to be starting this medication very soon, and one major "blip" that has seem to come up is how they are going to monitor me when it arrives. I take mass doses of beta blockers, calcium channel blockers, clonidine, and the hope is that this will reduce them all dramatically. Anyway, the question right now seems to be - How do we monitor me and keep me safe? the hospital is the safest and best place, and all my local doctors can select a day to be there at various shifts, but its not covered by insurance if this is an experimental drug, so a. how do I get admitted? and b. Even the side effects of Ivabradine at are incredibly rare, they're possible, if something happens, I'm going to get stuck footing that bill. Any ideas are appreciated, however, let me just say, that I feel very positive about this medication. I;ve been very sick for a long time and I know that I may sound as though "I'm putting all my eggs in one basket", however, this really is a one of the last options that I have before we move into procedure type ideas. I go back to Cleveland in a couple of weeks again, just wanted to give you guys a quick update. Thanks for always being there with kindness and some great ideas!Thank you my friends, any advice or support is always appreciated Sarah Quote Link to comment Share on other sites More sharing options...
Kkb1216 Posted March 12, 2015 Report Share Posted March 12, 2015 Oh my gosh. My cardiologist and I were trying to figure out how to order this for me. I see him this afternoon. I love synergy!!! Totally bringing this up. I am on highest does of beta blocker, calcium blocker, and they add in a little digoxin to keep it complicated. I would love to get off all of these. My husband also worries about monitoring me if I was able to get the script. I'm comfortable monitoring myself. I'm pretty in tune. But I know there are serious risks coming off all these meds. I wonder what my cardiologist will suggest... I probably will be too tired tonight, but I'll try to post tomorrow what suggestions he has specific to my case which may help you use specific terminology with insurance folks? We can't give medical advice cuz that's dangerous, so I'll try to ask for how to say things. I have an awesome cardiologist who talks like a normal human. Thanks for bringing this back up. You have no idea how excited this makes me. -K Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 13, 2015 Report Share Posted March 13, 2015 Sarah,What needs to be monitored?? For example, is it like depakote, where they need to check your serum levels? Or are there other ways to make sure it's not doing anything bad? Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 13, 2015 Author Report Share Posted March 13, 2015 Mainly Bradycardic events or other cardiac issues.. side effects would be worsened headache, visual affets "abnormal brightness" in rentinal fields, enhanced dizinesss, Fortunately though, those are very often mild and go away often in a brief time period. My doctors are cautious, as they should be, however, we've got to get a game plan going! Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 13, 2015 Report Share Posted March 13, 2015 Can't they find some other legit reason to put you on a 30 day Holter monitor and the timing just happens to coincide with the start of your new meds? With all your other issues, I can't imagine there aren't reasons to monitor and evaluate you. Wink, wink. Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 13, 2015 Report Share Posted March 13, 2015 Not sure but I am thinking along the same lines as Katy. I have been put in the hospital before through the ER for monitoring for other issues (air in my intestines, they thought I might blow up lol! ) ). Maybe they would admit you for observation due to tachycardia or blood pressure issues? Then, treatment might consist of Ivabradine? Just a thought. This is not medical advise. I am not a doctor. I am just a muse. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 13, 2015 Author Report Share Posted March 13, 2015 Thank you my friends, oh they can totally find a legit reason w/ BP, HR, Migraines, etc., to admit me for observance, but in the rare chance something went wrong because of the drug that would a really bad situation., for everyone.It looks like at this point we have one week-10 days to figure out how we're going to do this, I can't imagine I'm the first person in a situation like this? Quote Link to comment Share on other sites More sharing options...
Kkb1216 Posted March 16, 2015 Report Share Posted March 16, 2015 Hi Sarah, Sorry to be so long in getting back to you. My Doctor and I talked about what would happen this summer when he thinks he will have me in good enough shape to do this switch. These are the most general of his instructions, there were things specific to my care which aren't germane to this discussion. Nothing below should be considered as medical advise. 1. I would need to be stable enough to do this hand off. 2. I would need to be able to take a week or two and not plan to do a blasted thing.3. I would wear a monitor for at least 2 weeks and send him the info. ( he said he will have to look and see how things are going, and he might make me wear one 6 weeks) 4. If I felt any kind of heart discomfort, I would go straight to the ER. (which I would have thought of myself...but he was just stating it for the record)He was very very clear in telling me he would only let me do this at home if I found some sort of stabilization in the next few months. He feels I wouldn't know if something was wrong as quickly because of the up and downs. I've become pretty in tune with things, but I will admit to ignoring symptoms and pushing through when I feel something requires my attention. He also knows how well I don't handle being in the hospital. So he's willing to work with me.He said insurance wise, this can be a nightmare, but he could get me admitted if I felt like it was something we needed to do based on the fact my heart has taken a little damage from all this mess,and I would need to be monitored. He said insurance companies are "sketchy" (his word) with a medicine not exactly approved in the US, but that there are always ways to make sure a patient is safe. I know I have been asked to stop my heart meds when doing certain tests. I've always been comfortable, and knew what to expect. So I feel like this is totally doable for all of us. I don't know if this is helpful to you, but I wanted to share it anyways. Let me know if you have anymore questions or stuff. I pop in here a couple of times a week.Good Luck, -K Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 21, 2015 Author Report Share Posted May 21, 2015 Hi everyone,just wanted to update you all really quick that Ivabradine has been approved in US and is being manufactured by Amgen.I'm being admitted into the cardiac unit at the hospital to be observed while they decide the dosages of the Ivabradine along with my Beta Blockers, Calcium Channel Blockers and Clondine,,,, so that bradycardia can be avoided. This is a huge step!I;m trying to not get too excited, but I couldn't imagine leaving a hospital, or anywhere, with a heart rate of 100 or less. It would just be something that I have tried so hard for, for so many years. I hope its my miracle drug, but Ive also thought that In the past. As I promised months ago, I''ll continue to provide updates as I'm able to.Thanks for the support everyone!! Fingers crossed this one works! Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 21, 2015 Report Share Posted May 21, 2015 Rooting for you, Sarah!! Quote Link to comment Share on other sites More sharing options...
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