APS and bloody nose and blood clots into throat

[dar58]

I am on Warfarin For APS. Just recently, past 4 or 5 days, I have been getting many nose bleeds..Not bad but annoying. When I sleep I have been awakened by me choking on small blood clots. This is really strange and has never happened to me before. I even had to show my hubby, and this is because I always feel like I have to prove everything all the time to people. I hear, "You can't be that sick, or have so many medical problems because you look healthy." I really want to say to these people to take a day and walk in my shoes, feel the pain, live like I have to.!! In my younger years, I enjoyed life, dancing..swimming, walking trails, water ski-ing. Now a days it takes everything I have in me just to get up and do a little bit of house work. Sorry for the rant. Any ideas about these clots or nose bleeds?

[MaryF Administrator]

You need to go and get this checked out as soon as possible in a medical facility. Any changes on Warfarin need to be monitored with regard to your iNR and condition in general. MaryF

[Lure2]

I agree totally with MaryF!

I am on warfarin and selftest and know how important it is to be in range with the INR. What is your therapeutic range set by your APS-specialist?

Best wishes from Kerstin in Stockholm

[Dadog]

Even in INR range, these sort of small bleeds can happen, dar58. I get them every night from some of my teeth. If you are worried, check out with your GP - but ignore all this 'you can't be ill - you look so well' nonsense! A lot of us suffer from a lack of understanding, even from our loved ones. They want us to be well and almost go into denial over what is going on. All you can do is to stay positive and live within whatever boundaries are comfortable for you. Trying to be bright and breezy all the time, when sometimes you are really struggling, is counter productive and will not help your mental or physical state.

Hope you get sorted on the nose bleed probs. Stay well and concentrate on YOU!

David

[GinaD]

I have mentioned this book before on this site: "In the Kingdom of the Sick" does a wonderful job of breaking down and explaining the gap between the chronically ill and the healthy. The book certainly helped me do a better job relating to those who just don't " get it."

[Hidden]

I get that a lot too about looking healthy. I literally feel like an 80 year old man most days since my blood clots. Seriously. I feel so tore up on the inside. I look fine when I'm walking around in public, but I'm gritting my teeth most of the time. I live with a lot of pain in my DVT leg. The pain never went away after my clots cleared out. I also have limited mobility. If I walk more than a half a mile in a day, I will be limping and in sever pain the next day, and sometimes the day after that. But to look at me, you might think I'm perfectly normal. Sometimes you just have to ignore people, or you can just snap and let loose on them. I hope you get your bleeding issue straightened out. I also have bleeding in my gums sometimes. It really doesn't bother me. I'd take bleeding over clotting up again any day of the week.

[loretta1106]

I agree that you should go see an MD as soon as possible. Where do they treat your APS? I know its hard with APS as I was dx exactly 11 months ago and my doctors at that time totally didn't know how to treat my condition or monitor my INR. It's was terrifying and I felt I had to really take charge and find the right doctors. I live in the USA and self monitoring is not something our insurance pays for but I've found that I now have an internist in a university based hospital, a rheumatologist, neurologist at the same hospital. I'm starting to get my mamos there next month and will make an appt with a cardiologist, etc. as time allows. I have my blood tested regularly and my doctor calls me with the results and monitors my INR levels and Warfarin doses. Take care of yourself and I hope you find the right doctors who know how to take care of you.

[dar58]

Thank you everyone for your replies. My GP likes my INR at 3. I am snow bound today and my GP's office is closed due to this storm that we are still getting, but I will go tomorrow to find out whats going on. I really am a little concerned as I was recently hospitalized in Intensive Care for Flu, it kicked the heck out of my lungs, one of which had been damaged due to a clot. While in the hospital, my INR went crazy due to other meds I was on. So they started with heparin, then Lovenox shots and my warfain. When I was discharged my INR was stable so they left me on a stardard dose of warfarin. I went to the dr's for a follow up and my INR was still stable, that was over a week ago. I too am in the USA and self testing equipment just us not readily available which is a shame.

[Chef_Spartacus]

Hello,

I'm sorry to hear abt the unbelievers but it is understandable you just need to be tolerant, you don't need to explain yrslf to anyone! Rise above it!

I would speak to your doctor I had similar issues, bleeding teeth, gums but it will fade away and possibly not return for ages (months/years)!

Always go to yr doc and never feel like yr asking too much, just remember yr worth every penny ask yr daughter!

Good luck and take care

Best wishes

Paul

[mountainlady]

Hi I'm diane from usa. I have been streaming on healthnetwork today.Friday Dec 13.2015 I believe I diag nosed myself. I believe it's EPI. ENDOCRINE PANCREATIC INSUFFICIENCY. VERY VERY VERY MUCH LIKE ALL THE SYMptONS i HAVE. TO THE TEE. Sick since early adulthod. 60 yrs old now.

CONGESTION. BOWEL PROBLEMS.IE IN ABILITY TO DIGEST FOOD. BLOATING . MANY Awful SYMPTOMs. I can go on &on. Salty skin. That's what I said salty. It's the autoimmune disease of sweat glands . Congestion due to autoimmune disease of the mucus glands. Diabetes is also a consequence of the muscous plugging of the pancrease. Both parents of nothern european descent contribute a gene to make this living hell happen. Lol.

Can get more info online "EPI" Endocrine pancreatic insufficiency. Of course lupus sjogrens raynards I have.also sacro iliac arthritis possibly leading to alkylizng spondilothiasis or bamboo spine. We will hopefully not go there if I live long enough.so much info I have found online. Will stop now. Later