lung pain with blood clots

[daisiemaiskye]

Hi everyone,

I’m wondering if anyone else has had a similar experience to me or has an thoughts ….. last November I went to my doctor as I had a bruised feeling in the top of my lung - I only mentioned it in passing and 24hrs later I was in hospital and told I had multiple blood clots on both lungs - after a lot of hassle and hospital visits they put me on warfarin. In the January a second scan showed no clots! In July this year I started getting pains in my chest I was admitted and told I had angina, then the following week as nothing helped back in and told it was gastrointestinal camera down my throat no it’s not that! A third time the same doctor who told me I had angina said it was just my fibromyalgia and I needed to exercise more! A couple of weeks later a different doctor was checking out my heart to see if I had angina (I don’t) and on the ct scan they spotted multiple blood clots on both lungs again…. This whole time I’m in pain, I’m on morphine, it feels bruised and hurts when pressed there are three definite areas that are bad and I’m now using pain patches. I want to know if anyone else has struggled with repeated blood clots, what caused it? What cured it? Could I have pleurisy as it hurts when I take a deep breath and there’s sharp pains that come and go especially if I do too much - talking or walking or even just housework! I have a shallow raspy cough too…. I would love to hear from you if you’ve had similar any advice or thoughts please … thank you x

[sassy59]

Good morning to you, your lung issues need a second opinion l feel as being on warfarin should have prevented blood clots. I’m not medically qualified but I would definitely advise further investigation.

Wishing you better health. Take care and do keep in touch. Xxx❤️

[powderpuff]

Hiya,

I notice in your bio you’ve listed Antiphospholipid Syndrome APS as a health interest, have you been tested for this? Testing consists of 3 blood tests repeated after 12 weeks and is important to determine apparently unexplained clotting. The fact you’re still clotting even though prescribed Warfarin is a red flag for me - how is your INR? Although Warfarin is the gold standard in treating APS it doesn’t always prevent clotting.

[daisiemaiskye in reply to powderpuff]

Thanks for your reply I have had the lupus test for APS which came back negative they told me they can’t test me for the other one as I’m on warfarin and I’m high risk so they won’t take me off it to test! I’ve had migraines and I’m diagnosed with fibromyalgia and chronic fatigue which all link back to it. I’ve also had a miscarriage and other clots on my legs and lungs. But I don’t know whether I can get a diagnosis based on symptoms alone?

[powderpuff in reply to daisiemaiskye]

A negative Lupus Anticoagulant is ruling out the Triple + variant of APS. You need all 3 tests; Anticardiolipin antibodies (aCL), Lupus Anticoagulant (LA) and Anti-Beta2-glycoprotein-1 ( anti-B2GP1). It’s negligent to rely on one test which can swing from positive to negative especially with your history of miscarriage/clots.

Diagnostic criteria has recently been updated in so far that if people haven’t had an ‘event’ ie miscarriage, stroke or clot then they’re deemed as having APS antibodies - you have recorded events which strongly indicates active APS and a diagnosis. You need all 3 of those blood tests to get that though so push for those. All of the tests can be carried out while you’re taking Warfarin if you’re temporarily bridged onto something like Heparin.

Whose care are you under? It’s usually either a Haematologist or Rheumatologist - not all are equal! I can send you helpful links by PM if that’s OK with you?

[daisiemaiskye in reply to powderpuff]

Yes please I’m under a haematologist

[knitter]

Uk residents can contact the ALUK helpline open during the working week , they can advise on the next step .

Are you still on warfarin ?

Take care

[Millyboo710]

It’s the clots which are causing the pain and cough. I’ve had multiple clots on three occasions. I am now on blood thinners (Rivaroxaban) permanently. I would suggest you return to your GP and ask them why you are getting multiple clots and how to prevent them happening again.

[daisiemaiskye in reply to Millyboo710]

They don’t seem to want me on a DOAC. As It didn’t work with the first lot of clots so they’ve put me on warfarin so they can keep an eye on it but it’s taking over my life! When did you last have this? Did they scan to confirm? Have you been ok since the rivoraroxaban?

[Millyboo710 in reply to daisiemaiskye]

DOAC are better for patients as there is no need to have regular tests. Yes, I’ve had CT and Nuclear scans. The last lot of clots were in September 2021.

[peege]

Hi, very worrying. If you're in the uk do call the helpline for professional advice and guidance, it's 0300 222 5800 (I think), uk office hours. There is a section to the right on my tablet 'Related Posts ' (perhaps its a scroll down on a phone) there's one 3 yr old post about lung clots that may be useful re finding a Pulmonary Vascular specialist. Then there were only six centres in uk.

It needs sorting out, I'm thinking you shouldn't be still having lung clots - or any clots - but I'm afraid I know little about it. Very best wishes in getting to the bottom of this. P

[watergazer]

Gosh. Sorry can’t advise but wish you well in your quest to get better. Maybe a second opinion ? X

[Ern007]

Hi - I have to take Riveroxiban to make sure I don't get blood clots, It's the modern way to treat and or get rid of clots.

Angina should have been easy enough with an ECG - Simple ST changes can mean Angina, I have it and it was simply diagnosed.

You are under a Haematologist - he has a MDT behind him/her - I am not qualified but I think you need further investigations. Are you still on warfarin.?

[daisiemaiskye in reply to Ern007]

I met with the haematologist today who is now saying he’s not convinced they are blood clots but he’s not convinced they are not. He wants me to stop warfarin despite telling me I needed to be on it for life and to go on rivoraxabin and then he’ll test for APS as they can’t test if I’m on warfarin. I’m concerned about rivoraxabin as there’s no antidote. He mentioned the mdt and said he would not be able to retest me for blood clots due to radiation exposure! I don’t know if I’m coming or going and would like to see my private doctor but I can’t afford it at the moment!

[Ern007 in reply to daisiemaiskye]

Hi, I am on "Rivaroxaban it's a modern blood thinner and in lots of ways safer than Warfarin, although Warfarin can be stopped with Vit K - I am on the maximum dose and I have had no problems at all, also you don't have to have the endless blood test that Warfarin requires. More to the point Rivaroxaban is a modern blood thinner than mostly is preferred to Warfarin.

There is no antidote as such, but there is a lot they can do if you get a bleed. I am on 20mg, what are you on?

There is a kind of antidote "Andexanet alfa" There are other measures also. better than having clots that can block an artery

Try not to worry,

[daisiemaiskye in reply to Ern007]

That’s interesting the haematologist told me it’s only licensed for when people get an upper gastrointestinal bleed!!!

[Ern007 in reply to daisiemaiskye]

Well according to NICE bnf.nice.org.uk/drugs/andex...