A paper here with Julia Newton for Ivabradine with POTS. It can't be used for patients with POTS and NMH as it can cause a drop in BP (Sadly that hasn't happened for me! - can't get the side effects I need!)
Successful use in Inappropriate Sinus Tachy There are a very few other papers out there.
Ivabradine is a fairly new drug and from what I can gather is in the very unusual position of having received NICE acceptance before FDA.
I started on 5mg BD and was raised to 7.5 mg BD. for the treatment of Inappropriate Sinus Tachy. While it is considered that I may have hyperadrenergic POTS this has not been tested for and after a chat with the Cardio on Tues we've decided not to go ahead with those tests as there are no extra treatments for it available to me.
My HR is still around 100 at rest but doesn't often go above 120 any more. Occasional 150s on bad days.
My BP and pulse pressure are still pretty awful but I'm on such regular high doses of Prednisolone that this is hardly surprising.
I am now on 10mg Ivabradine BD. This is well over the accepted max dose of 7.5 mg BD but the Cardio can't give me beta blockers as my lungs are already in a right mess. There was over half an hour of discussion with Pharmacy before I got the drugs. I think that's a good thing overall. Keeping patients safe and all that.
Interestingly as we discussed the lack of research in all this the Prof noted that all his patients are slightly different and he needs to tailor treatment to that. He bluntly told me I was very complicated and unusual and there aren't enough patients like me to get together for research.
In other circumstances I think I'd rather like being so unusual.
So 10 mg Ivabradine BD and remaining on th max dose of Candesartan 8mg BD and the lungs meds. Let's see how it goes.
The Prof noted my BP swings a lot. That hasn't improved at all unfortunately. (ANS bust).
Pulse pressure is marginally better - tends to be around 50 with some 60s and a couple of 10s and a scary 80.
Anyone else on Ivabradine or with heart and lungs issues?
Successful use in Inappropriate Sinus Tachy There are a very few other papers out there.
Ivabradine is a fairly new drug and from what I can gather is in the very unusual position of having received NICE acceptance before FDA.
I started on 5mg BD and was raised to 7.5 mg BD. for the treatment of Inappropriate Sinus Tachy. While it is considered that I may have hyperadrenergic POTS this has not been tested for and after a chat with the Cardio on Tues we've decided not to go ahead with those tests as there are no extra treatments for it available to me.
My HR is still around 100 at rest but doesn't often go above 120 any more. Occasional 150s on bad days.
My BP and pulse pressure are still pretty awful but I'm on such regular high doses of Prednisolone that this is hardly surprising.
I am now on 10mg Ivabradine BD. This is well over the accepted max dose of 7.5 mg BD but the Cardio can't give me beta blockers as my lungs are already in a right mess. There was over half an hour of discussion with Pharmacy before I got the drugs. I think that's a good thing overall. Keeping patients safe and all that.
Interestingly as we discussed the lack of research in all this the Prof noted that all his patients are slightly different and he needs to tailor treatment to that. He bluntly told me I was very complicated and unusual and there aren't enough patients like me to get together for research.
In other circumstances I think I'd rather like being so unusual.
So 10 mg Ivabradine BD and remaining on th max dose of Candesartan 8mg BD and the lungs meds. Let's see how it goes.
The Prof noted my BP swings a lot. That hasn't improved at all unfortunately. (ANS bust).
Pulse pressure is marginally better - tends to be around 50 with some 60s and a couple of 10s and a scary 80.
Anyone else on Ivabradine or with heart and lungs issues?
