I have asked for my Tegratol medication for epilepsy to be changed to something else as it interferes with use of simpler blood thinners. I am currently on Tegratol 200mg twice daily, 9mg warfarin and 10 mg Bisoprolol daily. It was also suggested I start on digoxin although my heart rate has not been checked since the increase to 10mg . My readings are 56-64 today.
It has been suggested I change to Lamotrigine but on reading, find it can interfere with heart arrhythmias. I have not yet had an echo and have been told it will be a minimum of 6 month wait to be seen by a cardiologist.
I was advised of this on the phone today by a GP who has been at practice 3 days. I have made an appointment with my usual GP for and of next week as I am not happy and have questions.
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Fannyphasbees
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I remember replying to you before about tegretol - I’m also on tegretol (slow release), same daily dose as you and I’m currently taking warfarin following ablation, due to the Interaction. I’m on 12 mg of warfarin though, but I know my diet is quite high in vitamin K ( I’m vegetarian/pescatarian) and it has had to allow for that. My tegretol is for frequent feinting. Epilepsy was never fully diagnosed at the time, but tegretol seemed to fix it, so I’ve stayed on it.
I looked briefly into possibly changing tegretol, as I’m 58 now and I know I’ll have to go on an anticoagulant when I’m 65. However, I too was put off by the mentions of many affecting heart rythm, not to mention most had side effects I didn’t want. Plus, I wasn’t sure if they’d even be any good. Tegretol has controlled everything for nearly 30 years now, wuth zero side effects. It’s a big decision to make.
I too wouldn’t be happy with a GP suggesting another medication for me, instead of tegretol. I don’t think I’d even ask them, if I’m honest, as I wouldn’t trust their judgement as they don’t know enough about the conditions.
Were they referring you to a cardiologist to ask about an alternative to Tegretol? In my opinion you would be better speaking to a neurologist if this is the case. A cardiologist wouldn’t know.
I don’t know about digoxin, but have they said why they’re suggesting that change too? I would prefer a cardiologist to advise on medication changes of that nature for me and if Bisoprolol is working, I’d wait until I saw a cardiologist?
What is it you don’t like about warfarin? Is it all the frequent INR tests? I am not a fan of those as I’ve had to attend weekly for over four months now ( it took a while to reach the levels needed). There are home tests you can do to make it easier ( if it is that). If I had to go on it, in the future, I’d probably consider that.
Also, in the future, another anticoagulant may come along, that doesn’t interact with tegretol ( you never know). Many people must have this issue.
Thanks for your reply. It was me who asked if it could be changed and the neurologist has suggested this new medication titrated up over 16 weeks. I feel restricted with foods on warfarin and the blood tests are numerous. I’m now concerned so will wait to speak to my GP . I’m not happy to take the digoxin either since my heart rate has not been excessive.
It’s a hard one then. I think perhaps you need to discuss alternatives with the same neurologist and advise them if your concerns.
I know what you mean about being restricted on warfarin with food…it’s definitely been an issue for me as there have been only one or two occasions where I didn’t eat what I usually eat and it went right off piste 😳 you can do your own testing at home and that might be the answer.
I’d still wait to talk to a cardiologist about digoxin though, or talk to the GP about the need to change.
But really think very carefully about changing tegretol for the reasons I said before.
I might even risk one of the New anticoagulants when I’m 65. They are not all highly interactive, edoxoban can stil be taken by some and NICE, although it says there’s an interaction, they have given it a ‘lower’ one and have indicated the interaction is moderate ( last time I looked). It’s still a big risk though and still one to discuss with a doctor.
Both our doses are relatively low of tegretol. Some take four times as much daily.
As I have previously communicated to Fannyphasbees , my brother in Australia already takes tegretol (carbamazepine) together with a DOAC, presumably with medical approval. However, he does take a considerable higher dose of tegretol at 600mg morning, and 400mg evening. His DOAC is pradaxa (dabigatran) 150mg twice daily. He has taken the tegretol since childhood, and after taking warfarin for many years, was switched some time ago, by his doctors, to pradaxa.
As you wrote, I think the interaction between tegretol and the DOACs is on the "lower"/moderate range, and is probably why my brother's Australian doctors have suggested and approved the switch. I don't see why NICE would not give similar approval in UK.
That’s really interesting and I’m glad it works well for your brother too. I’ve saved your reply for the future 😊 I’ll hopefully be coming off this in a few weeks ( all being well after ablation) but shall definitely ask about it in the future.
It was edoxoban in the UK that had the better profile against tegretol. I’ve seen things change weekly on NICE guidance though. I’ve even seen them list warfarin as having an interaction.
My EP unfortunately wouldn’t chance any of the DOACs on me and insisted on warfarin. I know it’s a long lived, well tolerated anticoagulant but it is a difficult beast, for some.
Yes, that interaction of tegretol and warfarin was also noted by Fannyphasbees , which is why she was so confused about why this interaction was being ignored by her medical team, and yet the DOAC interaction seemed to be taken more seriously.
As you seem to be very cognisant of the warnings about the interactions with tegretol, can I ask if there is a comparative DOAC list of the risk profiles when taken with tegretol? It would be useful to have this information for my brother re his pradaxa use.
I won’t be able to post a link ( as I know it’s not liked by Admin) but it’s in the NICE interactions on line. This is what the NHS adhere to. You will get a list of all the medications that interact with tegretol ( or carbemazepine) including all the Anticoagulants. I believe there are warnings against every single one, the last time I looked, but as I say, Edoxoban had the better profile.
I also read studies on line where people on tegretol took these new ones with varying results.
I also read many things on line about the interactions and Edoxoban was again listed as the better option. It still said it needed monitoring, but I don’t know how it would be monitored as you cannot do INR tests. It had a better liver clearance ( or something) as it’s all to do with Tegretol being a CYP 3A4 inducer ( something like that, I don’t understand it).
My EP searched about the best one for me via the European Cardiology society in the end apparently as I queried all the interactions as listed by NICE. They said warfarin.
I am hoping that in a few years, things change and new ones come along.
Thanks for reply. I must be a bit thick in chasing this information, as I just couldn't get any relevant info when I just tried to search NICE re tegretol interactions with DOACs.
Could I ask you, when you can find a bit of time, to put any relevant links in a PM to me. That would help a lot (Admin have no access to the content of PMs) and you wouldn't be posting any links on the public Forum, as you require.
oh, I hope I haven’t made you nervous. It’s only how I feel personally. I’ve spent a long time pondering and searching all the different ones and drew a blank. A few of them can affect the heart, I remember reading. It was frustrating. I read reviews too…although I know it’s a small percentage who review. They were very mixed. The problem with this type of medication that we have to take, is that they’re quite potent and not to be taken lightly ( in my opinion).
I think it’s personally a risk for me, as I don’t want to introduce yet another new medication that might not be effective.
Whatever you decide, just weigh up all the pros and cons. You already know that even a neurologist doesn’t look into it as deeply as us too.
Hi. I just wanted to let you know I saw my regular GP yesterday to discuss the proposed change from Tegratol to Lamotrigine and start of digoxin. We had a good heart to heart. She agrees that I am very stable on Tegretol and there would still be a risk of seizure with the new epilepsy meditation . She also advised the digoxin is there as a back up in case the Bisoprolol 10mg starts to be less effective. I’m not to start it unless needed.
In short I’m sticking with what I take now and feel so much more settled. Thanks for your very sage advice.
I’m glad you’ve made what sounds like the right choice for you. Tegretol does seem to do it’s job very well, for both of us, so it’s one less thing to worry about.
You never know, another anticoagulant could come along in a few years, or even sooner that doesn’t interact with it. I’m sure we’ll be first in the queue for that, if it happens 😊 I expect this to be in the pipeline at some point, as there must be many thousands in the same position.
I have been treated with Digoxin for about 6/12 When AF suddenly affected me . Apart from fatigue there has been no other problems with it. It is a very effective treatment and I also take Edoxoban a more modern anticoagulant that reduces the need fo such frequent blood checks. However I don’t have epilepsy and therefore I don’t have to worry about interaction with other drugs. Although the GP you saw has suggested making these changes had only been in practice at your surgery for such a short time it doesn’t mean he is any less competent. You would probably feel more confident seeing your original GP and he would have a historical understand of your medical history, particularly the Epilepsy. He may suggest an early appointment to see the cardiologist.
Being diagnosed with AF does take some time to adjust to, as does the medication.
Thanks. I’ve been off work since March when admitted to hospital with AF. The Bisoporol certainly seems to work at reducing the heart rate. I was never at the GP prior to this so apart from knowing them through my work none of them know me. I do have confidence in the one I’m seeing on 12th July though. She has upped my referral to cardiology to urgent. Fingers crossed.
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