Odd reactions to various medications. - British Heart Fou...

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Odd reactions to various medications.

scentedgardener profile image
16 Replies

As the title says I have a history of reacting strangely to a variety of medications. My GP has remarked that it's probably genetic.

Having been diagnosed with paroxysmal atrial fibrillation I was given Rivaroxaban to try to avoid clots. Prior to taking them I had been told I was "a bit of a bleeder " in as much I bled excessively with dental extractions, small cuts, needed a drain after operations that didn't normally require one, and various things like that. Nothing earth shattering or dangerous, just inconvenient.

However, since taking Rivaroxaban I don't bleed. Not with a dental extraction or a cut on my finger. In the past I've had tiny cuts on my finger that would take 45 minutes to stop with pressure and elevation.

My concern is that I'm taking pills to avoid blood clots and they seem to have the opposite effect. I have spoken to various doctors who just dismiss it as they've never heard of it before and I have contacted the manufacturer but their concern is that the medication is not faulty (not likely as I've been taking them for a year).

I have managed to persuade GPs to do a clotting test which will be next week but expect to be told it's all within normal ranges.

Any thoughts or advice anyone?

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16 Replies
RufusScamp profile image
RufusScamp

There are different reactions. With non heart-related meds, my husband and I were on the same drug. He, with less than my body mass, needed 6 times my dose. Hoomans iz odd.

scentedgardener profile image
scentedgardener in reply to RufusScamp

Thanks for your reply, and I quite understand what you're saying but with PAF blood thinners are vital to avoid blood clots. I haven't come across anyone who has the same reaction as me. I'm on the maximum dose, as anyone with PAF would be.

richard_jw profile image
richard_jw

After my heart attack 2 years ago, amongst other drugs I was pit on to 2.5mg Rivaroxaban twice a day. I did bleed a lot when cut.

Now 2 years later, I am on 2.5mg ov Rivaroxaban once a day. Indeed I hardly bleed at all when cut. Much less than pre heart attack. They have changed tha anti platelet from clopidogrel to aspirin, Could be that, but as you say, if I am not bleeding after a cut, is the rivaroxaban doing any good?

scentedgardener profile image
scentedgardener in reply to richard_jw

I was initially put on Clopidogrel but when I was diagnosed with PAF they changed it to Rivaroxaban. I'm on 20mg per day, and I'm careful to take it with food to make sure it has the best chance of working.

As you say, is it working? There is no blood test to check that, only to test the levels in your blood.

Captain_Birdseye profile image
Captain_Birdseye

That's an interesting one... have you spoken to your pharmacist about reporting this through the yellow card scheme?

scentedgardener profile image
scentedgardener in reply to Captain_Birdseye

I've spoken to the clinical pharmacist at the surgery, 2 or 3 of the doctors and the manufacturer. I've also spoken to someone at Bloodwise as I also have M-GUS, and didn't know if it was a peculiarity of that, and then spoke to a cardiac nurse at the BHF. She suggested I request a clotting test, which will be this week, and I asked about reporting to the Yellow Card Scheme, I was unsure because I think it's linked to my odd reactions rather than an issue with the drug. She has advised that I do report it, so I will.

Qualipop profile image
Qualipop

I thought I was going to say I'm the same until I read further down your post. I have never had tablets do the exact opposite of what they should do. I do react very badly to a lot of medications as my GP can confirm but mine are more like side effects from different brands. I have to have oxynorm branded version of oxycodone and the generic ones make me feel really odd; this week I had to chase round several chemists to find one of the only two brands of statin I can take. One brand can be fine but one from another maker totally different. I had every one of the tablets after my HA changed because of bad side effects. MY GP greets me with "Hello trouble". I can't even now have an MRI scan because my whole body starts to get really hot. No idea why but it's a real nuisance.

scentedgardener profile image
scentedgardener in reply to Qualipop

You have been through the mill. I had no heart issues until I was given Vit D supplements. It wasn't coincidence, I'd had a CT angiogram a few months earlier because they got into a flap about chest pain I'd had 6 YEARS earlier, and I'd had it thoroughly checked at the time. The angiogram proved there was nothing wrong.

My GP thinks my odd reactions are genetic. It does make me apprehensive about taking new medications, and I hate the way the pharmacies give you whatever brand they have in stock, I would much prefer to have one brand and stick to it. My mother used to react to different brands so hers had to be kept the same.

I'll just have to see what the clotting test says.

Qualipop profile image
Qualipop in reply to scentedgardener

That really is strange. Have you seen an endocrinologist about the way you react? I'm guessing that may be the right person to see. It may be worth asking.

scentedgardener profile image
scentedgardener in reply to Qualipop

No, I haven't seen an endocrinologist. The ones in our area are about as effective as a chocolate teapot. If I do have to see one, and I have a few endocrine issues, I will have to go out of area.

My GP sought "advice and guidance" from them re: my reaction to Vit D and was told I was probably reacting to a filler. I had tried 2 different kinds, the prescribed ones were the cellulose shell, sunflower oil and vit d. Both times I took one I was taken to hospital by ambulance, the second time with every symptom of a HA. Troponin level was more than twice the point at which they'd worry, but they forgot to do the second one. The endos bright idea was to inject the vit d. I refused.

Please forgive me if I sound bitter, that's probably because I am. I will just have to depend on what I can find out, and act accordingly.

Qualipop profile image
Qualipop in reply to scentedgardener

It was just a thought. The only endo within reach of us is equally as useless. At least your GP tried. I wish you luck. So frustrating

scentedgardener profile image
scentedgardener in reply to Qualipop

Thanks. I'm sure I'll get there in the end.

Engineer46 profile image
Engineer46

My GP explained that the anticoagulants (Apixaban, Rivaroxaban, etc) reduce clotting inside the body and that the clotting mechanism outside is not the same since it is affected by the presence of air and lower temperature and pressure.

I take Apixaban and have not noticed any difference in the clotting of surface skin cuts.

Paul

scentedgardener profile image
scentedgardener in reply to Engineer46

Hi Paul, that explanation makes a kind of sense, but it's difficult to relate to my situation as no blood gets outside of my body at all. I don't bruise any more either.

Fish4Info profile image
Fish4Info

This drug was accidentally dispensed to me a few years ago (as Xarelto tradename). It was in the next bay to Rosuvastatin in the pharmacy (not any more!). Huge mistake by a young pharmacist (and me for not noticing - but it was at the time Crestor could be dispensed as a generic). I quickly (few days) started to bleed a lot rectally. Years ago I was taken off clopidogrel because of my propensity to bleed. Aspirin is my 'drug of choice' for antiplatelet therapy. Seems to work OK for me ... and no excessive bleeding if I do get cuts etc.

scentedgardener profile image
scentedgardener in reply to Fish4Info

That was indeed a big mistake. A bit scary when you consider that one person dispenses and another person checks it.

I can't take aspirin, and was taken off Clopidogrel to take Rivaroxaban. I think they work in different ways. I did bleed a lot with Clopidogrel.

It's interesting to hear of the different experiences people have.

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