Feeling nervous!

[Janny27]

I had unprovoked multiple clots in both lungs almost six months ago. I am nearing the end of the course of Apixaban (5mg twice daily) and to be honest I am fearful about stopping the medication! I am considering seeing gp to see if I can stay on it. Has anyone else felt like this and if so what was the outcome.

[Hidden]

The person to talk to is your haematology consultant - I don't know about where you are, but it seems that here (I'm under Guy's hospital) they really are the nicest people, telling you to ring any time if you are worried. So it's worthwhile making an appointment to discuss the pros and cons of stopping - but if they think you can stop, that's marvellous, as it means you don't have any more clots!

[Janny27 in reply to Hidden]

The haematologist I saw could barely give me the time of day. He just said it had been life threatening here is you prescription for Apixaban. I'm glad you have a good team unfortunately they are not everywhere. Thank you for messaging.

[AlisonClark in reply to Janny27]

I had a similar experience to you (I take warfarin). Was basically told that "years ago once we put you on it they stayed on it, and because you are overweight then just stay on it!". He was not interested in discussing it further

[Janny27 in reply to AlisonClark]

Thank you for sharing your experience. Honestly I sometimes wonder why a few of these medics ever entered the proffesion! The same Dr stood not 5 feet from my bed with his back to me telling someone "of course we see so many pulmonary embolisms in post mortems" !!! I left hospital with no information at all of what I should do or expect, in fact I have left the dentist after treatment with more information! Care/advice /treatment seems to vary so much.

[AlisonClark in reply to Janny27]

Exactly the same for me. I've just read a lot online to find out for myself.

[sue_b in reply to Janny27]

Yes, pretty much how it went for me except that they wanted to rule out cancer as a cause of the clot so I had to have scans. No cancer found but also, no reason for the clot ( I hadn't been flying). I had 6 months of Rivaroxiban which was then stopped abruptly, as is the norm.

13 months after the first clot I developed a 'massive' PE, so now I am on life long apixaban/rivaroxiban. My GP says they have not found a cause but I have no idea what they tested for. He also said that my situation was not uncommon. I am 57 , 'morbidly obese' and have histroy of varicose vein issues.

In another reply, someone else has talked about some of the Syndromes that can cause blood clots but in the absence of any of these, as far as I know, I am pursuing a different line of enquiry.

Last time it was tested ( 6 months before my first clot) I had out of range, high serum and saliva Cortisol. It hasn't been tested again since but my new GP is about to test, to see if it is still high. High cortisol is linked with worse than normal atherosclerosis. The big A leads to plaque on walls of arteries which can encourage clot formation. Apparently we all get it but some worse than others and lots of genetic and lifestyle factors to it all.

I may be barking up the wrong tree and I am not medically trained

Below are some links I have just looked at that are talking about Cushings Syndrome, which is the cause of seriously high Cortisol. I may have been the victim of a GP who lost interest but I believe that the medical profession only have 2 go to positions, either your cortisol is normal or you have Cushings. I asked my new GP the question, could high cortisol had been behind my clot and she said she didn't believe so.

The research below clearly supports my train of thought. Also, check out Dr Malcolm Kendrick.

tandfonline.com/doi/abs/10....

This one is about CIMT testing, as mentioned in the previous link:

coastalcimt.com/cimt.html

This is from the NHS about atherosclerosis:

nhs.uk/conditions/atheroscl...

I don't suppose any of this has made you less nervous but I know how it feels to be in your shoes and information is power. If I knew then what I know now, is there anything I would have done?

Well, I would have bought a machine for monitoring my INR. The machines aren't cheap but it seems that it is no more complicated than testing blood sugar. I could have avoided a second, life threatening PE and lung/heart valve damage. You may be able to persuade your GP to run the test after a little while off the drug?

This may have also applied in the past when the drug used was Warfarin but it seems callous in the extreme to treat someone for 6 months and then send them away with the knowledge that it is possible they may clot again, may die as a result of another clot! They know a certain percentage of patients will but it is not standard policy to monitor the INR after a first blood clot.

I hope that something here is of help.

Best wishes

sue_b

[Janny27 in reply to sue_b]

Thank you for sharing your experience and the links, I will check them out. It's only when you have been in this position can you fully appreciate the issues. I'm going to see my GP this week and have a chat, to be fair She is good and will listen.

Wishing you the very best.

X

[daisyd]

Hi did you have blood tests to see why you had blood clots. I am thinking about sticky blood, Hughes syndrome, Antiphospholipid syndrome all the same, but would probably mean anticoagulants for life but check with a doctor, wishing you well

[Janny27 in reply to daisyd]

After examining my history the doctors deemed it unprovoked. Thank you for your message.

[moo196]

Hi,

Mine was (is?) Blood clot on the brain.

Was anti coagulated for 2 years but needed to come off warfarin for some of the blood tests to be taken.

All results came back negative so no reason why I had the clot in the first place.

I had to be off the warfarin for six weeks before testing...so distracted myself with a little trip to India.

If there was no reason for your blood clot you are probably better off without the drugs really ....but do discuss with yr medical team.

Good luck

[Janny27 in reply to moo196]

Thank you.

[daisyd]

If I were you I would check with your GP that you were tested for sticky blood the test is taken 2 weeks apart

[Janny27]

Thank you for your advice, I'll do that and to be fair my GP is really good.

[Hidden]

Hi, Did you have any side effects from this medication. I am thinking of switching from rivaroxaban to this medication. My case also unprovoke but doc seems to want me to continue. Now in the 3rd month.

[Kravco]

I also had unprovoked blood clots in my lungs-pulmonary embolism. It came from a dvt in my leg. The doc did not know which leg. I have been on Eliquis 5mg 2x a day. Both my internist and my cardiologist recommended taking Eliquis for life. I had the embolism in October2016. I still do not feel good most of the time. Feeling weak,tired,pains in legs,shortness of breath occasionally,insomnia,etc. Don't know if side effects of Eliquis. Has anyone had similar experience?

[Janny27 in reply to Kravco]

I too still have periods of breathlessness and for no apparent reason, I could sitting down and will still experience it often along with palpitations. Like you not sure if it's the medication or my body! Thank you for you reply.

[sue_b in reply to Kravco]

Hi Kravco

I was on Rivaroxiban after my fist clot. Apart from a skin reaction that went away after a while and a gastric problem that I controlled by taking with food, I had no major side effects.

After the second clot I was on Apixaban but developed dreadful pain in the veins in my legs ( history of varicose veins). I had had pain in my veins in the past but nothing like as intense and frequent as I did on Apixaban. I asked my GP to change to Rivaroxiban and the pain did diminish but it has not gone and comes on night or day. I am convinced that the increased pain is due to the action of the drugs. Whether this is good or bad, who knows. My GP doesn't think this reaction should be Notified but that is sucking up to the drug companies, in my eyes; bad for patients in the long term.

I also have most of the other things you mention but they are mostly pre-existing issues related to on-going thyroid/adrenal issues and general lack of fitness. Some of the tiredness/ breathlessness is, I believe, due to the lungs still recovering from damage caused by the clot. I am not medically qualified but a Dr. I saw, said a PE is like having a heart attack in terms of being able to cause damage to tissue. The lungs can heal themselves over time.

best wishes

sue_b

[Kravco]

Thanks for the reply. Why did you get another blood clot if you were on a blood thinner? Was yours a pulmonary embolism. I have to take Eliquis for life. Why did your dr. give you two different blood thinners? Did you get a chest x-ray to check your lungs?