Has anyone in the UK been prescribed Ivabradine on the NHS?

[Womble]

Latest in the ridiculously long saga of my being prescribed Ivabradine by my cardio/electrophysiologist is that, my GP called today and has flatly refused to prescribe it. Apparently this is because it's an off-licence med for pots and she made the decision after taking advice from the district pharmacy adviser.

It is just shy of three months since it was diagnosed and I have had no help at all in the meantime, I haven't even seen a dr, of any sort, in that time.

Apparently my GP wrote to the cardio to say she won't prescribe (still using snail mail, so everything takes forever) and I was told to take it up with him.  Phoned straight away, only to find his secretary is away on holiday until next week.  I have been having a nightmare contacting anyone right the way through, as the GP is part-time and so, apparently is the cardio's secretary.

I spoke to another secretary from cardiology, who very kindly pulled my file to see what was happening, but also said that if the GP refuses to prescribe, the best I will get is one prescription from the cardio/electrophysiologist, which sounds pretty pointless.  Apparently a letter was sent to me last week, enclosing a prescription, that I will have to go to the hospital to fill, but she couldn't tell me how much the prescription was or for how long.  She also checked when my next appointment was (as he'd said he wanted to see me in 3 months, which would be next week, but I haven't had an appointment through) but after ending up with no meds for all that time it seems I've had my next appointment bumped to mid September.  I really needed to see him to discuss my nocturnal episodes and to find out the results of my echo, as all the GP would say was 'normal', which I know from experience, tells me nothing and I haven't been copied in on the results.

Does anyone know if UK/NHS consultant can prescribe for as long a I need it or are they restricted to single/starting prescriptions?  I would hate to start it, find it helps then have it taken away again. 

The whole thing is ridiculous, as there are no licenced meds for pots in the UK, so if every GP takes this attitude surely none of us would be getting treated?  Also, the same surgery prescribed the Bisoprolol prescribed by my private consultant without batting an eyelid, yet that's off-licence too. 

[E246]

Hi,

I was  prescribed Ivadradine in Newcastle by the Pots Dr Julia Newton. It didn't work for me but i didn't have any bad reaction either.

[Womble]

Sorry for the late response.  Thank you for replying.

That's what worries me - that only the specialist centres/units are willing to stick their necks out and prescribe it.  Although actually I have a prescription from my consultant EP now, but it turned out to be in response to my request for an interim prescription while my GP decided whether or not to she would be happy to do shared care.  Unfortunately I've been told not to take it until I've spoken to him, as I have no monitoring in place and his secretary wasn't sure if he could give me repeat prescriptions via the hospital pharmacy.  It's been months now, saw him last on 30th March and that's when he decided to prescribe.  

Finally got an appointment with him for next week, but am expecting him to decide against it now anyway, as my resting heart rate has dropped into the mid 50s and I am having dips as low as 47 bpm when lying in bed either early morning or before going to sleep.

I've been so symptomatic the last couple of months, I'm really struggling to cope and was clinging to the hope that ivabradine might help.  On top of everything else I've now got gastritis and haven't eaten anything but porridge made with water and zero fat yoghurt for a week and a half, between that, the migraines, facial pain, burning skin, numb hands and feet and my orthostatic symptoms getting a lot worse, plus all sorts of other weird and wonderful symptoms,  I am exhausted and seriously fed up.  Feels like I'm never going to get any real help.

 

[Katybug]

Womble,

I'm sorry this is still unresolved.  If the Ivabradine won't be approved by the doc, have you considered talking to him about other drugs used to treat POTS? Maybe being armed with information about the alternatives would at least give you some talking points to get a treatment plan together.

[Womble]

Hi

Saw my EP today.  He's not concerned about the heart rate drops and thinks my oximeter is probably failing to pick up ectopics and dropped beats properly.  He's started me on the lowest dose, just once a day, for a month. Hee's going to review it over the phone with me after three weeks and consider titrating up if it's going ok.  I have to get all my prescriptions direc from the hospital and he's only allowed to write a script for one month at a time, so it's going to be a bit of a pain getting there to pick them up every time, as I don't drive and standing in bus queues isn't exactly a strong point of mine either, for obvious reasons. He's hopeful that if he monitors me on it himself for a few months and all goes well, he will be able to persuade my GP to agree to shared care and prescribing for me at that point.   He has several patients on it at the moment and they have all found it helpful, so I am keeping everything crossed that the same will be true for me.

We've tried beta blockers and they weren't for me, propanolol didn't do a thing and bisoprolol knocked me sideways, gave me lots of nasty side-effects and left me unable to get out of bed.  This EP says he hasn't  yet found a beta blocker that has been effective enough on the heart rate, without lowering blood pressure too much with his POTs patient and most have suffered from pretty evil side effects on them as well.  I do have low volume, so maybe something to help with that might be an idea.  Same problem with everything in the UK though - it's all off licence, which makes some doctors shy away from even trying things out.  I will see how the ivabradine goes now I finally have it, but also do a bit of research into what else might help.

 

[Womble]

Just updating again.  If nothing else, it helps me to have a typed record of what's going, as my memory is hopeless.

So, I've been on a very low dose of just 2.5 mg once a day, in the morning, for a month, all fine, no side-effects, but no effect on hr/symptoms either.  Got the go ahead yesterday, from my EP, to up it to twice daily and picked up a new prescription today.  Took my first morning and evening dose yesterday, not expecting much to happen and have had a really busy day today.  

While I was standing in the hospital, waiting for my prescription to arrive, I suddenly realised my symptoms hadn't kicked in yet, which made me stop, think and realise that I have actually had a pretty good day.  It's now 3:00 in the afternoon where I am and I have yet to have anything over relatively mild symptoms.  I am so relieved to not have had my face/head instantly covered in sweat the minute I stand up - and that's on quite a hot day - as that's been really bad for while now and was starting to become a real problem for me.  It's early days and maybe I was just due a good day anyway, but I am daring to feel a little bit hopeful that I might finally have found something that will help me improve my quality of life.

One thing I have noticed since starting the ivabradine just over a month ago, is that I am sleeping so much better and have had far fewer of my nasty night-episodes.  Last night was my first 'evening' pill.  When I woke this morning I realised I had slept right through the night and like a log, which is pretty much unheard of for me.  Haven't a clue why ivabradine would have that effect, but will be very happy if it turns out to be a permanent, good side-effect, as it were.