Dabigatran and tummy trouble

[Honeymonster]

Hi there!

I have been on Dabigatran for over two years and have just been told, following a colonoscopy and endoscopy that I have stomach ulcers, gastritis and patchy bleeding in the stomach. I also have suffered with worsening diarrhoea now for about a year. The gastro consultant has recommended Omeprazole, but I am convinced the symptoms may improve if I came off the Dabigatran.

I have tried to contact my haematologist for the past few days only to learn she is on holiday until October. I am losing sleep, knowing I am taking a drug that is causing me problems. It really feels like a ticking time bomb.

I would love to hear from anyone who has experienced similar problems.

Love Honey Monster.x

[MaryF Administrator]

Hi, sorry about this stressful situation, can you find out who is covering your Haematologist's work while she is absent, I have seen some papers on line regarding ulcers happening sometimes with this drug. The advice is to take it with food etc. However it is easy to jump to conclusions. It is clear that you need a urgent appraisal in her absence. I hope you can get in touch with somebody quickly, to find out what to do, please try not to worry. Maybe when you ring up get the email address for the PA attached to the consultant covering her work? Then you can write also, to make sure the messages get through. MaryF

[Honeymonster in reply to MaryF]

Thank you so much for your reply.

I have written to the anti coat team again and attached my colonoscopy/endoscopy report.

My gastro is great and is keeping that team well-informed every step of the way. However, they are not responding. I will call again later and ask for a name and hopefully get in touch directly.

Thank you for your care and kindness during this stressful time.

Take care,

Honey Monster.

[HollyHeski Administrator]

Hi, sorry your having all these tummy problems, Omeprazole is often prescribed with gastro symptoms and has little side effects, it works by lining the tummy and protecting.

I have been on it for over 20 years after my 1st stroke and being prescribed aspirin.

Dabigatran needs to be taken after food, as you've had previous clots I worry for you coming off this. You mentioned in previous post switching to another anticoageration? Any reason for changing and why you didnt? Or did I read this wrong?

If your haematologist is away, someone must be covering their clinic, please try again to discuss your concerns. If you do have to wait until October, please try the omeprazole with the Dabigatran until then, it may calm the tummy down. Also make sure your gastro doctor keeps your haematologist in the loop. Have you told him your concerns about Dabigatran?Overall you don't want to get worse with the tummy or risk having blood clots.

[Honeymonster in reply to HollyHeski]

Hi there,

Thank you for your helpful reply.

You are absolutely right - one of the haematologists wanted to change my blood thinner, but another disagreed and said it was safer to stay on the one I was on but lower the dose. That never happened. They just can't agree on the treatment for me. I am single positive for APS and my clots were provoked by thoracic outlet syndrome, for which I had a rib removed. The blood flow is now ok in that vein. When I go for check ups, depending on who I see, one wants me to come off blood thinners altogether, one suggested Rivaroxaban and one said Dabigatran but low dose. And here I am in the middle of the whole saga!

My gastro has agreed to check my kidney function for me, as I have signs the kidneys are struggling, and as 80% of dabigatran is excreted by the kidneys, this could explain why I may not be clearing it adequately. I've asked his secretary to keep the anticoag team informed of everything. I have written another email to them today, forwarding my colonoscopy and endoscopy report and telling them once again of my concern. I will call them later, if I still don't hear anything.

Thank you so much for your care and kindness. It's so reassuring to have such great people to share this with.

Take care,

Honey Monster.

[chrissybell in reply to Honeymonster]

I agree with Holli, I've been on Dabigatran for about 6 years now (and it suits me perfectly). Had multiple bilateral PE's (Thoracic consultant said I literally had hundreds of clots!). They didn't know how I could breathe, let alone hadn't had a heart attach or stroke! But after the APS diagnosis, (came off warfarin after 6 months (and was very unstable on it!) the clots came back, so then had the 2 x blood tests and high positive both times - and every year since then!) So I would also try omeprazole (daughter is on it daily for aspirin, for low level APS, and ibuprofen for migraines) and it seems to work well for her - no side effects. Until you have clinical advice. (My dad has Atrial Fibrillation, and during the change from Rivaroxaban to Apixaban he had a TIA (baby stroke), so the change can confuse our bodies. Once your kidney function is checked, you'll know whether you should swap or not - they do check mine every year, and all's great for now, but I would take omeprazole until you get confirmed answers. Good luck! x

[Honeymonster in reply to chrissybell]

Thank you so much for your helpful posting. Good advice.

May I ask the dosage of Dabigatran you are on. As one of the haematologists suggested cutting dose from 150mg twice a day to 75mg twice a day.

Thank you,

Honey Monster.

[chrissybell in reply to Honeymonster]

I'm on 150mg twice a day. It still works the same as it tells the receptors in your brain not to clot your blood. I'm fairly heavy so am on the largest dose (they tend to put over 70's or people with kidney issues on smaller doses - I worked in a health centre for years). But suggest you get your kidneys checked asap too! I know last year my consultant said my kidneys were like those of a teenager (I'm 55!) But I don't drink, or smoke I literally only drink water, and have done most of my life. x

[Honeymonster in reply to chrissybell]

Thank you so much. You have been so helpful. Good news about your kidneys! I too only drink water and green tea and have never smoked. I’ll hopefully get my kidneys checked this week. Is it just a blood test or do they test a urine sample too?

Thanks again,

Honey Monster.

[chrissybell in reply to Honeymonster]

Usually a blood test, but urinalysis can show other things - so they 'might' want to check that too! Once you have your results your health consultants will have better information as to whether Dabigatran is affecting your kidneys or not - but I'd still take omeprazole until then to protect your stomach (personally). X

[Honeymonster in reply to chrissybell]

I will. I’m just waiting for the prescription to come through.x

[Honeymonster in reply to chrissybell]

Hello there,

I thought I'd just write a little update.

Today I went for blood tests requested by the gastro that carried out my colonoscopy. The nurse told me he's doing a lot of checks, not just on the kidneys. The biopsy results are not available as yet.

I finally spoke to one of the haematologists at UCLH this morning. He is not at all convinced my symptoms are caused by Dabigatran. I explained that out of desperation I had cut my dose down to 150mg once a day (as symptoms were so bad and no prescription has arrived for Omeprazole). He is going to come back to me on this.

However, a scary thing happened on the way to have my blood tests today. Luckily my husband was driving, but I noticed that my vision was impaired. I could see squiggly rainbow coloured lines, which prevented me from seeing clearly. These lasted for around 20 minutes and left me with a fuzzy head. I have emailed the haematologist to let him know.

I now have the Omeprazole tablets and the dose is 200mg twice a day. Should I now return to my twice daily dose of Dabigatran, as I can take the Omeprazole before each one?

Would love to hear your views.

Thanks,

Honey Monster.

[chrissybell in reply to Honeymonster]

Hiya, I would, as they're dosed for your body weight! That's really scary! Hope you get it all sorted. (Did they check your BP? - as high BP can affect eyes?) As can lots of other things unfortunately! Currently I have a macular hole in one eye, so it's like someone's thrown a brick through my windscreen - all electronic stuff in my centre vision looks like it's melting and normal central vision is blurred and sort of 'melty' - This is the second eye, Left first (bigger hole) - operation done 1st June and second op (as necessary even through covid is due in 2 weeks! (new lens and gas injected into eye - lasts 8-12 weeks - and viewing recovers over that 8-12 weeks!) So hope yours is Ok (Specsavers were amazing in diagnosing mine!) Glad they took blood for all. x

[Honeymonster in reply to chrissybell]

Thank you so much for all your help. I have found your support incredibly useful.

They didn’t check my blood pressure today. It was checked a week ago before colonoscopy and was ok.

So sorry to hear about your problems with your eyes. Thank goodness for Spec Savers.

Take care and thank you.

Honey Monster.x