Hi Everyone
Six years ago l had an aortic root and valve replacement surgery as result of a massive aneurysm (8.8cm), I now have a false root and a mechanical valve (St Jude Conduit). Roughly soon(ish) after this, terrible night sweats appeared out of nowhere, I still have them every night, frequently severe.
Over the years I have been tested for everything, hormone imbalances, Bacterial Endocarditis and loads more, I have been taken off certain drugs such as Amlopidine yet the night sweats still continue. I sweat at no other times, nor is it any more warm or colder than my bedding was prior to my surgery (nor do I feel hot or cold but kinda prickly when I wake sweating) and then, I never sweated at night. It simply started out of the blue sometime soonish after my surgery, I'm baffled and frustrated and haven't had a decent nights sleep for years. Waking in the middle of the night with wet bed sheets make it impossible to sleep again.
i do suffer from anxiety but take no medication for this. The only medication I take is Warfarin. I am a 48 year old man, I have read that although uncommon, night sweats have been recorded by some taking the drug, I'm also aware some drugs do different things to different people however uncommon these instances may be. I guess I'm trying to see if I'm barking up the wrong tree or could this be a possibility? Do any others have this problem? Was Warfarin ever identified as the cause?
Over the years I have blamed or believed these night sweats were caused by something, addressed the issue, yet the night sweats continue so I was wrong, am I wrong again? I'm at my wits end trying to work this out. I'm currently thinking of changing to one of the new NOACs such as Apixaban or Rvaroxaban, any advice on this would also be appreciated, I have a GP appt booked for 15 June to discuss moving from Warfarin to see if this may be the cause of these night sweats.
Thanks for any help
Hi Lee,
Thanks for sharing your experiences.
I have heard from a variety of medical personnel (including Consultants), that Warfarin can affect people in a variety of different ways. Warfarin gave me terribly itchy legs!
During a recent emergency admission to hospital, a Registrar told me that, with the introduction of the NOAC's, there was a push switch patients away from Warfarin due to the potential side effects.
I am on lifelong Anticoagulation and moved from Warfarin to Apixaban many months ago, without any side effects at all.
My advice would be to try Apixaban as it is documented to have a much lower risk of internal bleeding that Rivaroxaban and is just as effective.
Good luck with it all!!
Hi Lee, I've been on Warfarin for just over 2 years and will have to take for the rest of my life due to having a couple of nasty DVT's in my leg. I have talked with other warfarin takers at my clinic who have had excessive sweating at night, they reckoned it was due to anxiety.
The one thing I have noticed about taking anticoagulants is that there does seem
to be side effects that only some people get but others don't. Also think carefully about changing to something else coagulant wise as I changed to Rivaroxaban briefly but had to change back because it caused other side effects (bad headaches in my case) and the lack of antidotes for the newer anticoagulants is a bit of a negative too. I hope i've been a bit of help.
Hi,
Whilst the issue of an alleged lack of an antidote for the NOAC' is indeed a consideration, a Consultant Heamatologist (who transferred me to Apixaban), advised that every UK Hospital is aware of the procedure to follow should a patient on any of the NOAC's be admitted with a severe bleed.
In addition, an antidote is currently being developed and hoped to be approved sometime soon.
Yes, such is the power of anticoagulation medication on the human body, the side effects are wide ranging and affect different people in different ways.
I wish that I did not need to take this medication for the rest of my life, the risk of a further DVT and PE is far too great for me to stop taking them!
Thanks Nigel, that's really helpful, the more I read and hear, the more I'm leaning towards Apixaban. Like you, I'm lifelong anti coagulation thanks to my noisy mechanical valve (boy, you can hear it clattering away when laying in bed at night).
Warfarin is definately suspect number 1 in regards to these night sweats. I've been tested for everything and Warfarin is the only drug I take. I don't even drink alcohol since my surgery, I think it's definately worth seeing if they continue when I change, I think I'm going to ask my GP if he backs this, if he does, I'm going to push for Apixaban.
thanks again
Hi Rob, thanks, that's really helpful. People have suggested anxiety but I had this prior to my surgery and never sweated then hence why I've been ticking off other suspects. Your comment regarding Rivaroxaban is very interesting too, I'm now leaning towards Apixaban.
thanks
Hi Lee,
There is a lot of information out there for patients to consider!!!
I have found this forum to be invaluable with regard to the sharing of information.
I wish you the very best of luck!
Do keep us posted!!
Hello Lee . On Warfarin since Nov11 . No known side effects ,able to control and aware of effects of K .
Will do Nigel, thanks for your valued input
Thanks for that, I'm glad all is going well for you. In regards to actual hitting my INR, I do well. I'm kinda different as I manage myself, I have a coagucheck xs machine and my gp prescribes my test strips on prescription therefore, I test myself at home by jabbing myself in the finger with a lancet, drip blood onto test strip and my machine logs all my test results. I simply relay my INR results to my GP once a month and he adds them to my records. I never have to go to hospital for warfarin blood checks (yippee). It cost me £500 quid as I'm a lifelong dependent (£700 otherwise) but it was worth every penny
Lee . Got mine for £ 250.00 ( lifelong user ) in 2014 . Also stable INR
When (or if) I switch to Apixaban I will no longer need it thankfully, no monitoring needed. Got mine in 2010 straight after my surgery, it's certainly done its job, getting test strips on prescription definately helped but I'm definately drawn to switching,
Hope everything continues to go well for you
I had open heart for mitral valve and 4x bypass. They told me I couldn't have any other thinner because warfarin tests show thinning or clotting , both of which are serious as we all know. I get terrible sweats and itchy legs and also restless legs . I can't distinguish which of my (12 ) tablets is causing my problem though . I asked again about ask an and have been told no twice. I have dilated cardiomyopathy. My hubby has cancer and had a PE in October and he has Axiban and no side effects at all. I hope you get sorted Lee.
If you have a mechanical valve you cannot take NOACs.
There is a similar drug to Warfarin called ACENOCOUMAROL (Nicoumalone) that might just suit you better. It is precribed in Eurpean countries but seldom in Britain
I had a problem with joint pain and Warfarin. Research pointed me to the E123 (banned in America evidently) and Amaranth use to colour the 1mg tablets. After stopping the 1mg tablets the joint pain went.
Yes. My husband suffered awful side effects with warfarin. The sweats lasted about 18 months.
He had a lot of other issues with warfarin as well and has now been changed to Apixaban.
Hi Lee
Could be the Warfarin. There are a lot of side effects with blood thinners that Drs will say dont exist...however they wrong.
I was on 0one of the new NOAC Xarelto but terrible side effects. I'm trying Eliquis at the moment but would love not to be on them at all. I experienced a PE while taking Xarelto which my Drs said just couldn't happen??? I was in hospital for 10 days while they tried to find another cause for my PE. Ended up saying it was a spontanious clot.I'm positive the xarelto caused it.
Dont be mislead these are dangerous drugs...a Consultant Heamatologist may say they know just what to do if you have a bleed, but that doesn't mean they know how to stop it. There are no antidotes currently for this drug and many people have died because of this.There are a number of Class actions in the USA because of the number of deaths from the NOAC's. You just have to weigh up what you feel is right for you and go with it.
Hello Everyone!
I thought i'd just give you a brief update on how things are. Yes, I'm still sweating like a pig (do pigs really sweat?) and it's awful however, I have now had another appointment and this is how it stands. I cannot take any of the new NOAC's as I have a mechanical valve therefore, I am being sent for imaging of my sympathetic ganglia in my thoracic region to assess whether the night sweats could be a result of my aortic root and valve replacement surgery? hmm.
Whilst I am waiting for this i'm being switched from Warfarin to Simothrone for a trial basis to see if my night sweats are indeed a side effect of Warfarin. All my tests for TB, Sarocoid, HIV and Bacterial Endocarditis have all been negative.
Thyroid tests, testosterone levels and urine metanephrine levels have also come back normal.
Let's see what the Simthrone does and how my scan of my sympathetic ganglia come back. Hopefully, we're making some progress now.
Thanks for all your kind comments and input, much appreciated.
Lee
Lee , have been on Warfarin for almost five years and never have night sweats but it is quite a commom side effect for patients prescribed on some of the latest NOACs. Good luck with a cure .
Hi, Thanks for that. A colleague at work's wife, is a senior cardiac nurse and I also spoke to her. When I finished what I was saying, she said to me, 'did nobody warn you about night sweat's to which I said no, nobody has since my op in 2010. She sent me a leaflet about it so it seems it's not as uncommon as everyone (including me) seems to think. She said I should have been advised about this.
You learn something new every day! I think it's much like every other drug, any drug can do different things to different people as we are all different. However, I don't want to go round thinking this is it, it's all over, let's see how things go on Simthrone and if the night sweats continue.
Who knows, something may be identified when I have my 'sympathetic ganglia' scanned and I may be barking up the wrong tree altogether?
I suppose we're getting closer to identifying it or maybe it'll still continue after changing drugs and it my be my ganglia. We seem to be narrowing things down but haven't identified the actual culprit as yet.
I'll keep you posted and thanks once again for your helpful comments and input.
Lee
Good luck with Simothrone. I've asked about it several time and most UK consultants look blank as they don't know it. It seem to be prescribed a lot on the continent. I asked the sister at the AF clinic and she said we don't prescribe it as we don't know much about it but we know all about Warfarin.
I have a tissue aortic valve and NOACs are also contra indicated. I asked about Simothrone as I was getting painful weight bearing joints with Warfrin. I eventually put that down to the E number and the amaranth used in colouring the 1mg tablets. Now if I need to make up a dosage with a 1mg I use two 0.5mg instead and am no longer getting joint pains.