Yay Haematologist has agreed that I can stop Warfarin

[Mrsvemb]

I had a telephone consultation tonight with my haematologist. I explained how bad I am feeling on Warfarin . I also had the same problems with all of the NOAC’s, but said that if I have to suffer with nausea, I would rather it not be on Warfarin. He said that I am the only patient he has with so many intolerances and allergies. I even had an allergic reaction to clexane.

I suggested that perhaps I could take Apixaban for 3 months, then change to Dabigatran for 3 months, then back to Apixaban and so on. I can usually tolerate the tablets for a few months before the nausea sets in.

He agreed to my crazy suggestion and said he couldn’t see a problem with that, so he is going to write to my GP to get this started.

For me warfarin has been a complete nightmare. INR has been unstable, problems in getting warfarin, bleeding much more with a small cut than with the NOAC’s, nose bleeds and severe nausea.

I can’t tolerate any anti sickness tablets or PPI’s. In fact in the main I can’t take many tablets at all.

It is such a relief to see light at the end of the tunnel (for now anyway).

[wilsond]

You sound a prime candidate for the Watchman proceedure I'm surprised your specialist hadn't suggested it!I would ask about it.

[Mrsvemb in reply to wilsond]

I have had the discussion with both my cardiologist and haematologist. Both have said that due to risks and lack of information in this clinical setting, it is not advisable.

Obviously, if my new regime fails then I may need to take a few risks.

[belindalore]

You sound like me. I'm sensitive to prescription meds. There's lots of us who are. 😒 At least your dr listened to you about it. Take care. Hoping all works out for you.

[Mrsvemb in reply to belindalore]

My haematologist said yesterday that he hasn’t come across a patient with so many intolerances and allergies. He has never had a patient that cannot tolerate all anticoagulants like me.

I think we are a unique breed🤣 but it does make life difficult doesn’t it?

I have found in some cases that I can take one brand but not another. So it is the fillers, not the active ingredient that I react to.

In the case of warfarin, now I am reacting to all tablets, but originally it was the 1mg tablets which must be due to the ‘R’ numbers.

[belindalore in reply to Mrsvemb]

My ex who I live with has been on Eliquis and then Xarelto. Eliquus for a year. At first it didn't bother him but within a couple months he was having shortness of breath and no energy. His legs turned beet red and ulcerated and his feet turned black. He cut the dose in half himself and it helped some. After a year on Eliquis the Drs switched him to Xarelto and after just 3 doses his prostate swelled up and he couldn't urinate and he ended up in the emergency room and had to be catheritized for several days. The Drs mailed him ( we're in the USA and he goes to the medical clinic for military veterans) pradaxa. He read the side effects before taking it and it was the same as the Xarelto. It can cause urinary problems. So my ex said no way. Drs said well you have bad reactions to these Doacs so take aspirin. No way could he have taken warfarin or anything like that. He's now taking natural supplements and seems to be fine. Just had blood work a couple days ago at his clinic and he was deficient in vitamin D and his sugar was a little high ( he's a sweet aholic😂. me too but I can control myself most of the time 😇😂😂). So he's taking a D supplement. I don't do well on prescription meds at all. I think it may be genetic as no one in my immediate family does well on prescription meds. I asked to get a genetic test but couldn't. Insurance I have doesn't allow it. It's a very good test. It can tell if you are genetically unable to metabolize pharmaceutical meds or it can also tell the Dr what med might work the best for you instead of putting you on one med after the other, after the other to maybe find one you can tolerate. I live in the states and our insurance system is so unfair it puts many patients at disadvantage. Plus the insurance companies here are lord and master over what meds and tests you can get approved for. It's all just a money game here between big pharma and the insurance companies and many Drs. Money over the patient.I think you'd be a good candidate for the genetic testing. It's called pharmacogenomics. It's used here in the states in some places by some Drs where insurance allows it or I suppose if people can pay for it privately. My former Drs office tried to tell me the test was inconclusive. Just their excuse to say they didn't want to go against the insurance company to try to get me the test. Wouldn't do it even when I said I'd get the money to pay for it myself. That's why I said you at least have a Dr who listens. Makes a big difference. I also believe there are many many people who are sensitive to prescription meds. Sometimes they won't speak up. And they suffer silently.

I hope you do well on managing your health. It can be daunting sometimes. But thank goodness for whoever started this forum years ago. It has been so much help for so many. Take care.

Also Dr Gupta in the UK is a great cardiologist. Has all the videos and is so open minded as to different things that might help people. Wish the USA had Drs like him. 😌

[Mrsvemb in reply to belindalore]

Yes I wouldn’t like to be reliant on your insurance system. The costs for a procedure in the US is multiple times the cost of the same procedure over here if done privately. Having said that I will not be reliant on our NHS either.

I have private health care. It is expensive, so in some cases it is more cost effective to self fund rather than lose no claim bonus. I do use NHS for GP services and prescriptions.

I was referred on the NHS for gastric problems in December 2019.I had an endoscopy in March 2020 which gave a diagnosis. They said repeat endoscopy in 8 weeks. Then the pandemic kicked in. I got my 8 week repeat endoscopy in December 2020.

This showed an improvement, but my original symptoms still existed. I was told that I would be sent a routine appointment last December and I am still waiting. Once I get off of the warfarin I intend to go private for my gastric problems. I am sick and tired of eating white fish for dinner every night, so many things that I can’t eat. What I miss the most is a good curry.

I will certainly enquire about pharmacogenomics if my new regime fails. Thanks for that information, I hadn’t heard of it. I googled it. It is available on NHS for limited reasons, but I am sure that I would be able to get it done privately.

I wish you well.

[belindalore in reply to Mrsvemb]

I hear pros and cons of each other's medical systems. Here in the USA it is sad that one is treated according to the type of insurance you can afford. It seems the better insurance one has the better care they can get. It's just gotten crazy. And if you can't get any insurance, well you are most likely to minimal care if any at all. It's good you can afford private insurance. One thing here not too many have had to wait for care here that I've heard about since the pandemic. There have been many though who have not gone to the Drs office or the hospital for fear of catching the virus in those places. It's been devastating for many people. Yes you could probably get the genetic test privately. I'd also love to have a complete nutrient test but that won't happen either. I just wish the insurance companies would "stay out of the Drs office" and allow them to be Drs. Not just pill and procedure pushers. I've read that many people just quit going to the Dr because they are only treated for symptoms when they want to know the cause of their illness. And the patient isn't even allowed to be involved in their care or ask questions to discuss anything. Very hard for someone to be or get well when treated like a lab rat. Exactly how I feel. But I'm seeing a different Dr. in June. One I had years ago who is now accepting my insurance. Hoping he hasn't crossed over to the dark side.

Wishing you the best and take care.

[theuniquelady in reply to Mrsvemb]

Woo, then he hasn't me me! My list of drugs I am allergic to or can't tolerate is rather long. I ended up getting a Gunther Tulip IVC filter. Kept it in for nearly 12 yrs. w/o any problems before it was removed.

[Mrsvemb in reply to theuniquelady]

Yes I have a very long list too.

[24yearsandcounting]

Actually i am glad you offered an alternative meds regime to your haematologist; and glad he had the intelligence to go with it. So many times i have been fobbed off ill-considered remarks from my GPs. I got violent headaches with Prempack, menopause meds, that he suggested stopping taking them; he didn't offer any alternative. it wasn't until i saw an article in a magazine that i realised that patches were available, they worked a treat, and no bad heads. Also i was paying about £50 a box for probiotic meds when i had ME; i asked if it would be available on prescription, and at first he shook his head, but i suggested that we have a go and see what happened: it worked! I think mothers should stop telling children that, 'doctors make you better,' and tell them that they dont know it all, and should be gently guided to reach a solution.Rant over. i have been perfectly happy on warfarin for about 4 years now, no sharp stabbing stomach pain (which i get with some pills, and black pepper); no wild fluctuations in the INR readings, and plain sailing all round.

Best of luck MrsVemb.

su

[belindalore in reply to 24yearsandcounting]

Wish Drs could be gently guided. I nicely asked my cardio Dr to test for deficiencies of nutrients I could have and he became Dr Jekyll and Hyde. I thought for a moment his head would explode. And he pointed his finger at me saying he and the other Drs were doing everything to help me. No. Just pushing pills at me and not listening to my concerns is not doing everything to help me. Even being nice and gentle doesn't work with some Drs. 😵😂😂😂😂 He's no longer my cardio. I switched to another in the same office. I've seen her once and she seems to be a little better. 🙄

[24yearsandcounting in reply to belindalore]

i saw my cardio once for an appointment: he sat there eating biscuits and told me I couldn't possibly have been suffering for 24 years, ,and he told me that they didn't keep medical records back that far (i had been investigated for my wonky heart beat, and they said, 'well we can see it doing it, but there is nothing wrong with you'. I have since been told that they keep records till you are dead - and possibly longer. So he could have looked!!

[belindalore in reply to 24yearsandcounting]

OMG! Sounds to me like that Dr should have been digging ditches somewhere. I wonder how many people he has harmed. He does not abide by the Hippocratic oath. He should at least be reported. Was this recent? He really shouldn't be in practice. I just found out old records are kept by Drs. I'm going back to a Dr I had over 20 years ago and he still has my records. I had been told after a few years if you stop seeing a Dr your records are done away with. So you were right and he was way wrong. I hope you found a another cardio Dr.... He sounds scary. Like the 1st one I saw. Take care and be safe.

[24yearsandcounting in reply to belindalore]

I should have been used to mis-diagnoses; my first was when I was about 17 and had little lumps on the sole of my foot; 'just hard skin, my dear!' A verruca, of course!After that 'well, you don't look pregnant to me'; after missing two periods?!?! what did he expect. My not-really-backache was a virus of some sort (Bornholm's?) and the ensuing ME was, 'I think it's just you.' My wobbly heart-beat was, 'nothing to worry about'. The best illness I ever had was shingles; instant diagnosis; instant medication, and a proper end to it - lovely!

My favourite doctor told me that records are kept till you die, but they are kept off-site and nobody can be bothered to go and fetch them.

I told the biscuit-eater that i would rather suffer the illness than go back to see him: he was a 'plumber' rather than an 'electrician.

Best of luck to us all!! we will need it.

[belindalore in reply to 24yearsandcounting]

Oh my. You could write a book! I don't know if it would be a comedy or a drama. Maybe a little of both? Comedy of horrors? 😂😂 Thank goodness one Dr at least got shingles right! I wasn't expecting a good outcome of that for you either as I was reading along. Glad you told the biscuit eater bye bye. Calling him a plumber though was giving him way too much credit. 😬. Yes we all need some luck with these "Drs" we deal with. Take care.

[theuniquelady]

So sorry but I couldn't tolerate Warfarin either but tolerated heparin w/o any problems. Since I'd had 6 PE's as well as DVT's before I was 30 & didn't tolerate Warfarin I was given heparin and was sticking myself in the belly daily. My best of luck to you.

[Kingsley09]

I have taken apixaban for several years and I seem ok but I have developed aa urine problem and have to go much more and very urgently and am wondering if apixaban is the cause

[belindalore in reply to Kingsley09]

Read my post above. My ex had problems with Eliquis (apixaban) and a couple others..Look up drugs.com to read about ALL the side effects of these meds and comments from people who have taken the different types of anticoagulants.Take care.