What a to do. : What I would like to know is do... - PMRGCAuk

PMRGCAuk

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What a to do.

polymy profile image
22 Replies

What I would like to know is do steroids thin the blood? I posted this somewhere yesterday but it seemed to disappear. I was given Apixaban anticoagulant because of A/F. Within four weeks I had collapsed and was taken to Resus with a Haemaglobin of 57. I had 4 transfusions and the consensus was that apixaban had caused the massive haemorrhaging. I told my gp and my heart failure nurse that I was having blood from my back passage. Nobody took any notice. Doctors still want me to take the apixaban and I have refused. Normal hg is around120 so you can guess how life threatening it was. I thought if steroids thin your blood then maybe it would be some protection.

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polymy
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PMRpro profile image
PMRproAmbassador

Dear god - let's kill the patient!! I'm assuming your lab quotes Hb in grams per litre, I've never come across that before.

Stick to your guns over apixaban for the present, go back to warfarin like my husband or ask to switch to Pradaxa/dabigatran (my choice) which has the downside of being 2x daily but at least there is an antidote!! Also ask if there is a local lab that can measure the levels of the new anticoags in the blood - important if you are going to take one.

What other medication are you on? I assume with a/f you are on something and some of them interact with the new anticoagulants. I was put on Pradaxa and propafenone - if you take them at the same time it raises the level of the anticoag in the blood by about 50%, just on one dose. That of course means you don't get down to the same low level in 12 hours and over time it makes the peak level higher and higher so care is required.

My husband also had rectal bleeding, due to late effects of radiotherapy for prostate ca. He was admitted to hospital immediately and they measured the apixaban level in his blood: 10 times what it should be. No wonder he bled! The surgeon said it is extremely common - they find it all the time when patients come in for surgery and it has to be delayed until the level has fallen, which may be 4 or 5 days instead of the 2 days they usually allow. When the bleeding started he had stopped taking the apixaban for a couple of days - "Just as well, you would have died otherwise" said the surgeon. He has gone back to warfarin!

I had noticed that I was bruising - suspected why and spread the pills out a bit for a few days which always seemed to work. However, the lab in our hospital is headed by someone whose "thing" is coagulation and he has the equipment to estimate all the new anticoags they use here. So we have been doing an experiment: I had it measured with the 150mg dose with the propafenone taken 2 hours later. Too high. so we switched to the lower 110mg dose. Then we checked it after I had taken both together - the blood level was even higher. Taking the propafenone 2 hours after the 110mg dose gives a perfect level. The next thing we are doing is how much the blood level falls from the peak so testing it just before the next dose is due.

The pred ISN'T enough anticoagulation when you have a/f. It makes you bleed more in terms of easy bruising but that is probably the capillaries are more delicate rather than the clotting ability of the blood is compromised. However,

This drugbank.ca/drugs/DB06605

says

"The serum concentration of Apixaban can be increased when it is combined with Prednisolone."

That's why I asked if you are on anything else besides - the pred could be partially to blame but so could anything else you are taking. And doctors seem to believe the wonder-USP that the NOACs don't have to be monitored. They do, there cannot possibly be a dose that works for everyone whether they are 50kg or 150kg in weight - and other medication is KNOWN to alter blood levels.

If I were you I would make an official complaint about the GP and the nurse - g/i bleeding should be assumed to have a nasty cause until proven otherwise and, as you nearly found out, it can kill. OH's GP sent him straight to A&E which you should have been too. I wouldn't agree to apixaban or any other a/c that doesn't have an antidote or they can measure the blood levels. Good stuff warfarin!

polymy profile image
polymy in reply to PMRpro

Thank you for that very full explanation. I am on a number of meds.

Frusemide

Spironalactone

Hydralazine

Isosorbide mononitrate

Ivabradine

Tramadol

Paracetamol

Prednisolone

Joydeck profile image
Joydeck in reply to PMRpro

"The serum concentration of Apixaban can be increased when it is combined with Prednisolone."

Fascinating! Apixaban is clearly the preferred NOAC. Makes me happy I have resisted—with age my sole AF risk factor—advice to take apixaban. Bleeding risk is so important.

PMRpro profile image
PMRproAmbassador in reply to Joydeck

Do you have AF? You DO need an anticoagulant of some sort to reduce the risk of stroke - the AF episodes can mix up the sludge we all have at the base of the ventricles and send blood clots off on a journey. If you are lucky the lungs catches them and is is "just" a PE, if you aren't it is a heart attack or stroke ...

And unless you name is somewhat misleading, female gender is also a risk factor ...

polymy profile image
polymy in reply to PMRpro

Yes I do and I think something else will be offered when I have fully recovered. I realise it is essential but boy have I had a fright.

PMRpro profile image
PMRproAmbassador in reply to polymy

The reply wasn't to you actually, it was for Joydeck. But the sentiment is the same!!!

As I said - warfarin does have a lot going for it! OH is very happy back on it. I was on a clone of warfarin but suddenly it went mad and we couldn't get to a stable INR. No idea why but it shot from 1.3 to 3.7 in a few days!!

Joydeck profile image
Joydeck in reply to PMRpro

I am male and I do have asymptomatic AF.

I adhere to the American (USA) practice of not prescribing anticoagulants until age 75, where no other risk factors are present. Besides, my metabolic factors (HDL, LDL, TG, BP and glucose), diet and lifestyle are optimal. And PMR has had little impact so far.

Besides, I tend to distrust Pharma sponsored research on NOACs.

PMRpro profile image
PMRproAmbassador in reply to Joydeck

So do I. Which is why we've been doing our own little study on my dose and monitoring requirements!

Joydeck profile image
Joydeck in reply to PMRpro

Have you seen these?

- "New study finds antithrombotic therapy has no benefit for low-risk atrial fibrillation patients"

- "Benefit of Anticoagulation Unlikely in Patients With Atrial Fibrillation and a CHA2DS2-VASc Score of 1"

PMRpro profile image
PMRproAmbassador in reply to Joydeck

Have you never had hypertension associated with your a/f?

The questions doesn't arise for me as my CHA2DS2-VASc Score at a/f diagnosis was 2 and is now 3 as I am over 65 (that scores 1, over 75 is 2).

Joydeck profile image
Joydeck in reply to PMRpro

I am hopefully five years away from an age-driven CHA2DS2-VASc Score of 2. I do take low-dose aspirin, every second day, but latest research scarcely supports this.

Now 35 years on a low salt, wholefood, mainly plant-based diet, my blood pressure has long been stable around 110/70, my LDL around 1.6 mmol/L and my TG around 0.6 mmol/L. My enduring hero is Nathan Pritikin, RIP.

And it's not good genes. Both my parents had hypertension and heart disease. Father had macular degeneration, arthritis and dementia, and poor mother had PMR, diabetes and vascular peripheral disease, losing both legs above the knees.

What's more, I adore the food I eat and the exercise: so much variety.

PMRpro profile image
PMRproAmbassador in reply to Joydeck

My mother and her sister had heart disease - but my a/f has no link to that at all. It is autoimmune in origin. My father's side all lived to ripe old ages except him - and he had a cerebral haemorrhage due to an aneurysm at 49.

Joydeck profile image
Joydeck in reply to PMRpro

Mother had AF and TIAs, and stroke definitely runs in her family tree. Father's dementia was likely vascular. Mother lived to 87; father to 90.

polymy profile image
polymy

Thank you PMRpro. I made t quite clear in hospital that I would not be taking it ever again. I almost died as a result.

PMRpro profile image
PMRproAmbassador in reply to polymy

But that fact seems to have escaped them ...

polymy profile image
polymy in reply to PMRpro

Not only that, my neighbour rang for a gp visit for me as she could see how poorly I was. Gp came and did some obs and went on her way. Missed completely that I had acute anaemia. Disgusting.

HeronNS profile image
HeronNS in reply to polymy

I am very glad you are okay now. What a horrible and frightening experience. As a young woman I had an episode of gastric bleeding, at least we all assumed later this was what it was. I was fainting all over the place. Hubby phoned doctor, guy on duty remarked over the phone there was "a lot of that going around". Eventually I collapsed and another doctor (this is at student health) whisked me off to hospital where I ended up with four units of blood being given, many horrid tests (all clear) inflicted, there for days. And at the same time my father, unbeknownst to me, was in hospital thousands of miles away with a bleeding ulcer.

polymy profile image
polymy in reply to HeronNS

Dear Heron. How awful that must have been. The loss of so much blood rendered me useless. I was crawling upstairs at night knowing there was no energy left to wash and clean my teeth. I am growing stronger by the day now and give thanks that Im still here.

PMRpro profile image
PMRproAmbassador in reply to polymy

Are you on your own at home? The amount of blood units you needed suggests you were very much on a borderline. Had you collapsed alone at home, it doesn't bear thinking what might have happened.

polymy profile image
polymy in reply to PMRpro

Yes I live on my own. The consultant told me on leaving hospital that I was very fortunate to be alive. Also that I had now been safety netted and at the first sign of bleeding to ring999 and I would be fast tracked for treatment. I was undoubtedly very poorly. Found myself wishing I could pass in my sleep.

HeronNS profile image
HeronNS in reply to polymy

I know exactly what that is like. Several years ago something happened to me, which my doctor said was most likely a burst blood vessel in my stomach, (and I guess I'm lucky to be alive). I was getting ready to go out, and suddenly could not stand up. I literally crawled to my bed, phoned my son to get him to get his dad to come upstairs to me and help me into bed, and I was very thirsty so I asked for a glass of water. And at the time I remembered what had happened so many years before, and wondered if my time was up. However I recovered all by myself, and only casually mentioned it to the doc at a later visit for something else. It must have been at least ten years ago. I remember that ragdoll feeling, awful.

Thelmarina profile image
Thelmarina in reply to PMRpro

Constant reminder of how vigilant we have to be. We can’t rely on the experts who are as fallible as we are in spite of their training! This Forum with its sharing of factory floor experience and input from you and similarly knowledgeable people is absolutely invaluable.

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