Tag Archive for aspirin

The One Year Check Up

Sorry it’s taken a few days for me to get around to this update.   You know how life gets busy…

Here’s the answers to my questions, in no particular order, and what happens next.

(1) Aspirin.  The 75mg a day of baby aspirin has to continue for two reasons.  First, the clot is still there in my vertebral artery (in the back of my neck).  The aspirin prevents it doing any more damage. Second, there is the minuscule chance that there is some kind of congenital weakness there – he made it sound more like winning the euromillions type odds than getting struck by boring old lightening, though the figure of 5% chances of reoccurrence on a tear has been bandied around the VAD group  recently.  In any case a baby aspirin would prevent this doing much harm so it would make sense to continue that even if the clot ever clears itself.

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To be continued…

Before the afterstrokeparty, Kate told a friend they’d enjoy the evening because it was “such fun” seeing me drink!

It’s true: one glass of wine is enough to make me seriously tipsy, so I drink less than most.  In fact during the whole afterstrokeparty I actually only had two drinks (and a couple of diet cokes). Equally, I get sober really quickly too.  I mention this because I’ve now got an explanation that also explains my warfarin experience.  I metabolise drugs very quickly.  It explains the higher doses of warfarin, it explains getting tipsy and sober on alcohol faster.  It’s not at all uncommon either, nor anything to cause anyone any angst.

Yes, obviously I saw the consultant at Hospital Number 2 for the Cadiss trial today!  This could be a long post.  I was in there about 40 minutes.  So if you really want to read on, make a cup of tea, find a comfy spot, and then proceed.

photo stolen from clairebelles (click to link)

You may need a quick reminder about the Cadiss trial for context.  It’s a trial that compares the post-stroke-as-a-secondary-to-vertebral-dissection effectiveness of warfarin verses aspirin. I’m on warfarin.  As part of their data collection, Cadiss provides drugs without prescription charges for 3-6 months, a follow-up scan at 3 months, and a senior neurological consultant to tell you what the new scan says.  We were hoping that the 3 month scan, which I had the other Friday, would show the artery was healed and the warfarin could be stopped earlier than the 6 month regime prescribed by the NHS standard protocols.   As it turns out, there are now additional benefits for me (in my opinion) as ongoing care is moving back from Hospital Number 3 (and the nice Dr D) to Hospital Number 2 (and the more senior Dr A).

Why are we talking about ongoing stuff?  The scan showed that my artery is still occluded (blocked) and so, for now, I remain on the warfarin.  As my boss texted, “not what we wanted”.

Dr A started out by reading the notes on each scan, which was kinda cool because I could see the screen over his shoulder and spot key words.  I’d forgotten quite how many I’d had.  A CT on 11 Oct, an MRI on 12 Oct, and another CT with contrast (dye) on 13 Oct.  He was most interested in the scan from the other Friday.  It was supposed to be an MRI but due to a mix up it was actually a CT with contrast.  I don’t know what the difference is in output but it seemed to give him the info he needed.

Dr A’s taken my case back over to Hospital Number 2.  I “can still go” to Dr D’s February appointment at Hospital Number 3 (which is when I’d expected to be signed out of the NHS stroke system) but Dr A told me to tell him that “he isn’t allowed to make any decisions, I’m in charge now”.  I like Dr D of Hospital Number 3; he’s great.  But the place I felt safest and like everyone knew exactly what they were doing was in Hospital Number 2.  I know this is because I was in the HASU there, so it was all about the setup, but it still remains that I’m glad about this decision.

As well as showing that the artery’s still blocked, the scan also showed a load of other things from the event in October; a little “meteor shower” of hits to my brain, which isn’t that surprising given I had a clot breaking up all over the place for a day.  It’s disappointing I have to stay on the Warfarin, and this all goes on until at least May, but these things happen.  The beauty of the scan is that we know what’s going on and it can be managed, and that’s the important bit.  So what next?

In May there will be another scan, followed by another clinic with Dr A.  Apparently the artery may or may not remain blocked.  An occluded artery isn’t a problem, as there are 3 others supplying blood to the brain, as long as it’s not capable of repeating the ‘meteor shower’ activity.  I will be on “something called aspirin” (!!) forever, but what happens in the immediate future – i.e. getting me off the dreaded warfarin – now gets decided in May.

What else?  The snippets:

  • There’ll be no thrombaphilia test, he agrees with Dr D that would be a waste of time
  • He became the first to ask about stress at the onset of the issue; it can be ‘associated’, though my blood pressure is perfectly controlled… (I’m secretly quite proud of my blood pressure: it’s been measured a gazillion times and, while I wasn’t paying attention for the first few days, since I’ve been out of hospital its always been on the low side of normal, which is where all the medics seem to think is rather excellent)
  • Don’t get pregnant until I’ve seen him in May… no, I haven’t any immediate plans!… but “I wouldn’t want to see a planned pregnancy until I’ve seen you in May”.  Um… ok!

So basically, it’s not over yet.  Ho hum.  Updates will occur, sporadically.  I’m neither joyful nor upset about any of it, but instead just glad we know where we’re at.  The continuation of the warfarin, however, is a bit of a drag.

But two more lovely things also happened today: another lovely friend commented on how welcome and part of it all they felt at the party which again is testimony to both you and she.  And my flatmate E, well, she decided that scan-day meant presents.  So she got me these:

 

Shoes...

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Failing the drugs test

Some stunningly sensible observations and questions have been raised about the graph in the previous post.  “That chart is very odd. It looks like the positive coupling between Warfarin and INR is very low.” And “is it anything to do with the Cadiss trial?

The graph baffles me too.  I don’t understand how raising a dose can allow for a reduction in the  element it aims to raise (my INR).  It can’t have anything to do with the trial I am on.  The trial compares the effectiveness of aspirin treatment with that of warfarin.  I am on warfarin, which is what I would be on if I wasn’t on the trial. The trial doesn’t dose me, they just take data.  They do provide the packets of warfarin, but they come straight from the pharmacy at Hospital Number 2 (where I was in the HASU).  So it’s not that.

The only pic of a stroke unit I can find without an old person in it: i stole the image, click on it to see its german neuro owner

When you have eliminated the impossible, whatever remains, however improbable, must be the truth,” or so say Sherlock Holmes (Conan Doyle). So I guess it’s me.  One can affect the effectiveness of Warfarin by eating things high in Vitamin K.  I’m not really doing that.  Initially they were relatively relaxed about me not worrying about this: only one  alcoholic drink a day, and vary what you eat every single day, and no cranberry juice, was about the sum of the advice.  But as this has gone on I’ve really been careful about greens and things that are listed as being on in the top 100 or so of being VitK rich.  They do still pass my lips, but in small amounts if they are incidental to other ingredients in a pre-prepped dish; I’m not buying them on their own.  I miss rocket, watercress and spinach a great deal: I reckon they made up at least 15% of my diet, as mixed bags of were my key must-have ingredients before.  But unless I’m eating something that I haven’t clocked is chokka full of the stuff….  Of course, there could be something underlying in my blood make-up.  But while they  will do a thrombophilia (or hypercoagulability) test after I come off the warfarin, both my stroke doctor and my GP think it will be negative.  Stroke doctor:It’s going to be a waste of time, but everyone your age gets one.

I have asked about other drugs.  They say there’s only aspirin and warfarin and warfarin works.  This isn’t true but it appears to be the NHS answer.  There is more information about other drugs, namely Pradaxa, Xarelto, and Rivaroxaban – see here and here.  But I don’t know that they are licenced for use for strokes/anti-coagulation in the UK, and in any case if they don’t know how to use them, I’m probably best off on the warfarin.  And I wouldn’t want to do the two-anti-platelet route– see here for why!

(Note: aspirin, herparin, clexane are all anti-platelet, warfarin is anti-coagulant.  That’s why I can do the Clex and the warfarin at the same time: they are two different ways of preventing blood clots, or preventing those that are there from getting out of hand.)

So… that’s where we are I suppose.  Next INR checks are Monday and Friday next week.

In other news, I’ve got some interesting things coming up – finally!  I’m going into work for a morning on Wednesday to observe a very significant event in our annual calendar that I usually mastermind (otherwise I’m not back until the new year).  My friend who came back from the warzone is coming to stay.  And I’m going to do to my residential MSc moduled from Sunday 6th.  More on those, I am sure, later!  All these things bring their own challenges, but I’m so ready for a good challenge.  I might even sort out my course work and see if there is anything I can start before life life starts happening again, in proper doses, next week!

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Hair brushes and war zones

My hairbrush is suddenly full of hair so I googled, and hair loss is a potential side effect of heparin and warfarin.

Not all of it, but about 20% of it.  I’ve got a lot of hair.  It’s not like anyone else will notice (I’m thinking of you, Wendy) but I don’t like it.

If it keeps happening, particularly if the RNI doesn’t stay stable on these drugs, I might consider switching.  It was a consideration for next year anyway so I might just bring it forward.  But I’m on a drug trial called Cadiss, which I remember I forgot to mention.

Apparently there are two drug routes that can be taken post-vertebral-dissection-stroke.  After the initial blast of IV drugs, you either go the aspirin or warfarin route for 6 months or so.  Noone knows which is more effective in the long term: aspirin is safer but is it as effective, warfarin may or may not be more effective but it has more side effects.

The Cadiss trial (see details here: CADISS) randomizes each person into either the aspirin or warfarin route.  You and your medics know which one you are on, but the trial does not, not until the end of the study.  If I hadn’t done the trial, my postcode (I think its that) meant that I’d go the warfarin route.  I was randomized into the warfarin route, so I’m getting the same thing, but the trial gets the data, which seems to be a good thing to do.  But… there are reasons to switch and I’m not adverse to doing that at some point, and may even ask for it, if it seems like the right thing for me at the time.

I just read the first paragraph again and that reminds me that they don’t seem to tell you about the drugs.  I thought they always went through side effects and stuff but it seems like if you’ve been inside they don’t bother.  So the doctor who didn’t call me back yesterday because its not his normal job says “has anyone talked to you about this, how if x or y or z happens you should come straight in?”…. Um… no….

On a completely different note, one of my best friends leaves the UK today to go back to some farflung warzone.  Stay safe trouble. xx

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