My first anticoagulation clinic

[ozziebob]

This occurred yesterday at a large London Hospital. I was seen by a young pharmacist with 4 years experience, and who had been in the anticoagulation unit for 5 months.

The decision of others not present was the recommendation that I start Apixaban, rather than the now usually recommended Edoxaban (as a recent Post indicated, and I can confirm).

Apixaban was chosen because of my medical history of chronic bilateral subdural haematomas at the end of 2016, and the reassurance that studies showed that Apixaban produced less brain bleeds than all other DOACs (!!!!!).

I was further reassured that my situation had been discussed between various medical specialists in Cardiology, EP, Neurology, and Haematology before the recommendation was made for me re Apixaban.

Thinking about all this later however, while I am grateful I was given this personalised extra consideration, I am extremely disappointed I took no part in these interdisciplinary discussions about "what was best for me". So I am no wiser about the "experts" thinking, nor the risk %s used for future brain bleeds or strokes in my particular case. I was excluded, and feel excluded. After all, I cannot help myself if I have been excluded from these discussions about my medical situation.

Further, I suspect the relatively inexperienced pharmacist chosen to deliver this decision to me was probably because it is part of an expedited scheme to clear the waiting list for these medical services. And this means patients don't get to meet with the experts who make decisions on their behalf, as might have occurred in the past. This pharmacist had no knowledge she could share with me about this detailed decision making process. She did refer to the main haematology nurse at the end of our meeting about my decision to continue without anticoagulation, at least until I resolve my Vitamin D deficiency. But no insight from him either into the previous decision making process.

I also consequently had no chance to ask the appropriate decision making experts about the use of an anticoagulant as a PIP, as some others on the Forum have reported as being accepted by their EP. In fact I forgot to ask, but such a question was obviously beyond the pay grade of the staff that I met yesterday, and would have been met with incredulity. Disappointing that.

Finally, I hope this Post doesn't appear as too self-obsessed. It's just a report of my experience, which I do genuinely hope might help a few others on their AF/anticoagulation journeys. Just one would be enough.

ozziebob (aka bob).

[Desanthony]

Yes my first consultation was with a part time anticoagulation nurse back in 2017 with out any scans being done and it really was disappointing - no real information given and she even told me I was in heart failure which I was not and still am not. It caused a lot of problems as the medication given gave me worse side effects than the AF so I decided to go the private route and see a cardiac EP privately - and even then it was difficult to get the medication right but at least I got all scans done and read that very day by the cardio EP and could contact him about medication and side effects at any any time by e mail or telephone. Thankfully, my wife has us signed up to Benenden health care and they paid for my initial consultation and all the tests and scans up to £1500. We then moved house and I found a wonderful cardiologist and nurses who ran a Cardiac rehab course at a local gym and then got to see an EP in their team.

[ozziebob in reply to Desanthony]

Thanks for reply. I read your biog and you really have been through several mills and more.

Re communication with medical experts, I have no ways to contact either Cardiology or EP at the moment, other than a re-referral via my GP.

Consequently, your suggestion of a private EP consultation might be appropriate if my current situation suddenly nosedives.

Keep strong,

bob

[Hidden]

my extremely well regarded EP was dismissive of using anticoagulant as a PIP, said it was clinically irrational as the clotting risk existed episodes or not, as the heart function is likely to be sub optimum in anyone with AF even after a successful ablation. I would be interested if other EPs said dissimilar and of course age may be a factor - and CHaD and bleed score

[ozziebob in reply to Hidden]

FaberM,

Yes, your EP's reply was what I would have expected from the nurses I have so far seen, and is the overwhelming advice currently given. It's just I felt it preferable if I had been included in the "experts" discussion of the risks they used to make their AC recommendation for me. I don't think it unresonable to expect an informed discussion about my medical situation re risks. An opportunity missed that I fear will never recur.

Re my statement that others on the Forum have reported using ACs as a PIP, if you search my relevant past posts you will see the Replies where this is mentioned by a few. I had trouble today finding my Posts on the site, but I did find this Reply from healingharpist ...

I hope it's not out of order to copy & paste that Reply here ...

"I agree with your emphasis on individual risk assessment before simply quaffing down the ACs. I have had 2 cardiologists (1 EP) and a GP suggest that the most recent studies lean towards the highest risk of stroke occurring during an extended AF episode, and they are favorable on the PIP approach to ACs, one directly recommending that I take Eliquis for a couple of days if my episode goes over a few hours. They also emphasize paying attention to whether one has high blood pressure, diabetes, family history of stroke, or other predisposing factors. My father was on ACs and bled out and died from a comorbidity, so I am cautious on ACs. AF originates for many reasons, and not all episodes promote clot formation to the same degree; but I well understand people’s desire to feel they have some “safety net” with the ACs, even with the risks. As a research dr myself, I feel more studies are needed to parse refinements in this tangle of remedy vs risk. Until then, we have to carefully evaluate our individual risks and needs. (It took awhile to start using flecainide as PIP, so maybe this development is happening now with ACs.)".

This is a very relevant Reply, but it seems time is not on our side as we need to make decisions today.

bob

[Hidden]

interesting - will watch developments

[Mrsvemb]

The various medical specialists are known as a Multi Disciplinary Team (MDT). This is common practice in many aspects of medicine. Patients are not invited to attend as many cases would be discussed by the team.

There is not time for you to have a ‘consultation’ with four or five medics at a time. However, it would be normal practice for one of them to discuss the decisions with you afterwards.

In your case it seems that the person you met with was clearly not up to speed with the decisions made and the reasons why.

In these days of a broken NHS everything is done to reduce waiting lists as fast as possible, often to the detriment of patient safety.

Using anti coagulants as a PIP is dangerous. Clots that form in the base of the heart during an AF episode can remain there for for some time after.

If using anti coagulants as a PIP was safe, surely the NHS would be recommending that as they are not cheap drugs (apart from Warfarin).

I hate taking anti coagulants but that is preferable to suffering a major stroke.

[ozziebob in reply to Mrsvemb]

Hi, thanks for taking time to contribute.

I value your explanation about hospital procedures.

And I value your contribution on anticoagulants, although I also have to also consider the contribution of healingharpist, requoted above, who incidentally is a research doctor, and speaks directly to the individual factors involved in each decision.

And I am fortunate that I currently have no comorbidities which I realise is not the usual situation for members on the Forum, who perhaps consequently carry different/higher risk burdens. But I do have a higher risk of future brain bleeding.

I realise it's a life and death decision, and I continue to welcome the latest research.

bob.

[Offcut]

I was first put on Warfarin in 1992 and it was not a simple occasional blood test to confirm my INR was stable. Like my AF it was not stable at any time I have the scars to prove it. However, it was after they announce that they had new pills that I looked into them. But in the early days the fact they had no antidot for the one I was suggested to take I carried on with the Warfarin! Further down the line I was getting older and more complicated conditions it seems I had a greater risk of brain bleeds with Warfarin? It was at that point I made the decision to move over to Apixaban. My GP and Cardiologist did have input all the way but it was my decision.

Be well

[ozziebob]

Thanks for taking time to contribute.

Let's hope you don't get caught up in the current NHS rush to switch DOAC users to Edoxaban.

Unfortunately, as I have said, I haven't had the chance to talk to any of the experts (cardiologists, EPs, neurologists, haematologists) about the individual risks, as a lone AF sufferer, that I am carrying re brain bleeds and strokes with my decision about anticoagulation.

Keep safe,

bbob

[JOY2THEWORLD49]

Hi

In having a newer chemist she is uptodate with newer research.

Sounds good and reasonable to put you on the dearest anti..

I'm on Pradaxa but I see that has a ?

I only take 110mg twice a day.

Most drugs have side effects and risks.

cheri. JOY. 73. (NZ)

[ozziebob in reply to JOY2THEWORLD49]

Joy,

Yes, Apixaban is said to produce "less brain bleeds than other DOACs", but is not now the NHS first choice because of a deal to obtain Edoxaban at a cheaper price. Make of that what you will.

Of course, at the moment I'm not taking any anticoagulation. The risks are individual for each AF patient, and fortunately at the moment I have no comorbidities, and that is important risk-wise.

But it was positive that the more expensive and more appropriate Apixaban was recommended for me.

bob

[Duglas1947]

Hi Ozzie

I had a stroke in 2004 and have AF and a leaky mitral valve and was advised to take Warfarin but I declined. I have been seeing a cardiologist since then and he eventually convinced me to try a NOAC and suggested Rivaroxaban which I tried but had stomach pains with it. So I then switched to Apixaban 10mg which had a similar effect but I decided to half the dose for a month (ie take one tablet a day instead of two). After a month I took the prescribed two tablets a day with no stomach problems. I have now been on Apixaban for 5 years with occasional bruising in my arms and hands and even more occasional eye blood vessel bleeds. I stop the tablets for a day or two when I have the eye bleeds but this isn't advised by my cardiologist!

[ozziebob in reply to Duglas1947]

Hi Douglas,Thanks for describing your experience with Apixaban. Very helpful. Incidentally, NOACs are now called DOACs. "Novel" has been changed to "Direct".

So a stroke is a restricted or blocked blood vessel, or a clot in the brain?

My haematomas were an unexplained chronic bleeding from "burst" blood vessels, giving symptoms of hand paralysis, but eventually stopping to leave large accumulations of blood across my brain. If this event recurs when I am taking daily Apixaban, living alone, the result may well be catastrophic according to research I have read.

My feelings are I would prefer to take Apixaban as a PIP, but this option doesn't seem to be authorised in the UK at the moment.

Interestingly Northwestern University in Chicago has just started a 7 year research project on DOACs using a PIP approach with patients self-monitiring with watches supplied by Apple. Sadly this research is about 10 years too late to help me. But the future for others in the future is brighter.

Keep well.