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Original poster

Blood thinner side effects - has anyone found one type is better than another?

35 replies

VisaWoes · 23/10/2023 08:11

DD is on rivaroxiban for life after PEs. They make her feel ill, stomach pain and tiredness. Sometimes she feels so poorly she tops taking them for a bit and then gets chest pain and starts again.

She's convinced the stomach pain is internal gastro bleeding and her iron levels are very, very low. She doesn't know how low as she is ignoring repeated texts from the GP to make an appointment but they did ring her up and asked if she'd been in accident and had a major blood loss so I'm assuming very low.

She is now taking iron tablets but isn't very compliant with this either. She's managed to take 4 tablets in a week and is meant to be on 3 a day!

I've told her to go and talk to the GP about a different type of blood thinner, but she says they'll all be the same. But google suggests apixaban might have less side effects.

Has anyone here not got on with one and then being better on another?

OP posts:
NeunundneunzigHorseBallonz · 23/10/2023 08:16

No real answer but this absolutely needs investigation and dicking around with anticoagulants like that is bonkers!

Whitegrenache · 23/10/2023 08:25

Gastro bleeding is a side effect of rivaroxiban

This need investigating asap.

Whitegrenache · 23/10/2023 08:27

I used to sell apixaban it has much better bleeding side effect profile

All anti coagulants have bleeding as side effects but apixaban has the best out of them all.

Original poster
VisaWoes · 23/10/2023 08:30

Thanks all. I’ll nag her again to make a doctors appointment. So hard when they’re an adult and I feel I shouldn’t be this involved but am so worried about her and she doesn’t do anything

OP posts:
endofthelinefinally · 23/10/2023 08:31

Of course she needs to go and see the gp. She is taking serious risks with her life.
The gp is trying their best to get hold of her, that should indicate how important this is.
Yes there are alternative choices of anticiagulants.

AltitudeCheck · 23/10/2023 08:35

Blood clots, blood thinners and potential stomach bleeds are all far too important to get wrong! She needs to speak to her GP asap. Tiredness and feeling awful could be due to low iron / anaemia which, especially in someone on blood thinners and with stomach pain, really needs investigation.

Iron tablets are notorious for causing stomach side effects. Latest evidence is that taking an iron table once daily is optimal (less side effects and better absorption than three times a day). Try taking it on an empty stomach and avoiding caffeine to get the best absorption.

endofthelinefinally · 23/10/2023 08:41

Surely not 3 rivaroxaban tablets a day? The maintenance dose is one tablet. How long has she been on it? Do you know whether the PE was caused by anything? She really needs to see the gp urgently.

endofthelinefinally · 23/10/2023 08:41

Oh, sorry, I see you meant iron tablets. Phew.

Missingthegore · 23/10/2023 08:50

She needs to take herself to the GP especially if they are chasing her to attend.
She also needs to be truthful with the GP about the side effects she is experiencing.
The range of DOACs has improved in recent years but she and her GP need to go through her risk profile to chose the best option not randoms online

TheBabylonian · 23/10/2023 08:51

Different anticoagulants have different side effects, she needs to try an alternative.

Original poster
VisaWoes · 23/10/2023 09:38

Missingthegore · 23/10/2023 08:50

She needs to take herself to the GP especially if they are chasing her to attend.
She also needs to be truthful with the GP about the side effects she is experiencing.
The range of DOACs has improved in recent years but she and her GP need to go through her risk profile to chose the best option not randoms online

Absolutely. She did see a doctor about 6 months ago and asked about alternatives but got fobbed off that they’re all the same. Which doesn’t seem right.

OP posts:
spanieleyes · 23/10/2023 09:48

My son is on lifetime blood thinners, he had constant problems with rivaroxiban to such an extent that he was having multiple blood clots whilst on a high dose and is now back on warfarin.

Original poster
VisaWoes · 23/10/2023 14:28

spanieleyes · 23/10/2023 09:48

My son is on lifetime blood thinners, he had constant problems with rivaroxiban to such an extent that he was having multiple blood clots whilst on a high dose and is now back on warfarin.

Blimey. That’s worrying. Has he got a clotting disorder that they know of?

OP posts:
spanieleyes · 23/10/2023 15:15

They don't know! To be honest, they don't really seem that interested in finding out why he develops blood clots, they simply treat him when he does. He has had four, his first when he was 21, he then had a four year gap and then three within a year. His right leg is permanently enlarged and he was on the verge of having to have a pulmonary endarterectomy last year( if you Google that, beware, it's very scary!) But they are now being cautiously optimistic and he has six monthly check ups at The Royal Papworth, monthly check ups at our local hospital and weekly visits to the GP to check his INR levels!

Original poster
VisaWoes · 23/10/2023 16:38

@spanieleyes doesnt sound very good they’re not investigating but then maybe they take the view what difference would it make even if he does have a clotting condition they can put a name to? Chances are the treatment would be the same I guess.

Dd did get referred to a haematologist and they tested for something like the most common five clotting disorders and she was negative for all and they just said well you might have a rarer one who knows! Or you might just have been unlucky, or it could be covid related who knows!

OP posts:
Original poster
VisaWoes · 23/10/2023 16:38

Weekly INR checks is hard going though!

OP posts:
spanieleyes · 23/10/2023 16:47

Yes, I think something similar with my son, it wouldn't make much difference knowing what causes the clots if it's only blood thinners that will stop them!
His INR rate is very variable, he is meant to keep it between 2.5 and 3 but it is quite often wrong! After his first clot he was on warfarin for 12 months and we thought that had sorted it, he then got his second, was put on rivaroxoban, had a third and fourth so they moved him back to warfarin and just said he needs to be on it permanently. The clots, apart from damaging his leg, have also affected his heart and lungs, he's a bit of a mess!
Back to Papworth next month for a further check up. Last time , they had a camera through a vein in his neck into his lungs! Still, the rooms there are very nice though!

Vinorosso74 · 24/10/2023 21:48

I take Apixaban, I'm on a 2.5mg dose which is a preventative dose and I don't think any of my side effects are down to the Apixaban. I do bruise slightly easier than I did but the haematologist did say she felt this was the best drug. However, that could be for me and might not be the best for someone else
I had breast cancer and have had a medical menopause and take Letrozole tablets which I think cause all my symptoms!
@spanieleyes has your son had any investigations into antiphospholipid syndrome? FIL has it and it took a long time for him to be diagnosed, that was nearly 30 years ago I think.

endofthelinefinally · 24/10/2023 22:56

spanieleyes · 23/10/2023 15:15

They don't know! To be honest, they don't really seem that interested in finding out why he develops blood clots, they simply treat him when he does. He has had four, his first when he was 21, he then had a four year gap and then three within a year. His right leg is permanently enlarged and he was on the verge of having to have a pulmonary endarterectomy last year( if you Google that, beware, it's very scary!) But they are now being cautiously optimistic and he has six monthly check ups at The Royal Papworth, monthly check ups at our local hospital and weekly visits to the GP to check his INR levels!

Is he under the supervision of a clotting specialist and does he know he is entitled to a small machine and training to check his INR himself? He can email his results weekly to get his dose advice.

spanieleyes · 25/10/2023 07:55

He is also autistic and has anxiety, so for him, going to the GP for tests weekly is preferable to checking himself, he has a strong belief in the power of the professional! He pops in every Friday lunchtime and it's part of his routine.
As far as I'm aware, he hasn't seen a clotting specialist, I shall persuade him to ask!

olympicsrock · 25/10/2023 07:59

Yes apixaban has less mucosal bleeding but if they have iron deficiency anaemia DD is having bleeding usually from the gastrointestinal tract or could be heavy periods?

itto · 25/10/2023 08:04

My husband is supposed to take aspirin everyday as he has a form of blood cancer and very thick blood, but it causes him intense stomach pain. A herbalist recommended a willow bark tincture as it contains salicine and has a similar action to aspirin, but none of the side effects on the Gastroinstestinal tract. He doesn’t take it everyday as he finds the taste disgusting (although it’s just a few drops in water), but maybe an option worth investigating?

looking4pup · 25/10/2023 08:11

spanieleyes · 23/10/2023 09:48

My son is on lifetime blood thinners, he had constant problems with rivaroxiban to such an extent that he was having multiple blood clots whilst on a high dose and is now back on warfarin.

This is scary.

How can you have blood clots on blood thinners?

I've been on
Riveroxiban but I kept forgetting to take it with good. I've been on Apixiban a while and I'm so tired. Sorry no clue how to spell them.

Do you know what caused the clots? They have no idea with me.

endofthelinefinally · 25/10/2023 08:33

itto · 25/10/2023 08:04

My husband is supposed to take aspirin everyday as he has a form of blood cancer and very thick blood, but it causes him intense stomach pain. A herbalist recommended a willow bark tincture as it contains salicine and has a similar action to aspirin, but none of the side effects on the Gastroinstestinal tract. He doesn’t take it everyday as he finds the taste disgusting (although it’s just a few drops in water), but maybe an option worth investigating?

This would be totally inadequate for someone with a history of PE.
She should go and ask about apixaban.
However, like pp's son, some people need to be on warfarin. IMO a review by a haematologist who specialises in clotting problems is the place to start. With the state the nhs is in atm I am not sure that everyone who needs it gets the appropriate specialist referral.
There are standard protocols for most things, but there are some patients who are more complicated.

endofthelinefinally · 25/10/2023 08:37

"How can you have bloodclots in blood thinners?"
-Non compliance (not taking the meds correctly)
-wrong drug prescribed.
-wrong dose prescribed.
These are the most common reasons.