Sticky Blood-Hughes Syndrome Support
8,434 members8,590 posts

Hello

Hey everyone

26 Replies
oldestnewest

Hi and welcome.

I've read your profile, sad you have this disease, so brave you have gone through so much and absolutely fantastic you have a great career. Well done you!

I hope you have an APS/Hughes specialist and are getting the right treatment and support?

Again welcome

1 like
Reply

I’ve read your profile and boy oh boy you have and are going through an awful lot. Very proud of you for finishing school and now lecturing. Maybe they will lecture somewhere there about this disease to inform and awaken other people about it being out there.

Curious, does anyone else in your family have an auto immune disease? I see it’s been a very difficult road you have been traveling on.

I hope the worst of it is over, welcome I am glad you are here, Cindy

1 like
Reply

Hey Cindy..thank you for the warm welcome. As you have asked no one in my family had auto immune disease my doctors were really shocked that I've triggerd this condition still things are quite unexplainable in my case..right now the problem that I'm facing is of bleeding gums I've been on warfarin for the past years due to my IVC filter implant n now my doctor has shifted me to Xeralto which is causing unexplained bleeding through my gums I can't sleep whole night just bcz the blood keeps on seeping out. I'm so worried.

Reply

Hey thank you for the warm welcome.I'm getting the right support but still things go quite unexplainable in my case.Due to my new anticoagulant my gums have started seeping blood at night.It's just so hard to sleep because I've to spit in out after every 10 20 seconds.One more thing is that my bilirubin levels are always skyrocketing I don't even eat spicy food.When I got my LFT test there were no signs of any hepatitis bcz all the liver enzymes came out to be normal except the bilirubin levels..My eyes have also started to turn yellow so I make sure ia drink as much water as I can. Life is quite complicated.

Reply

Maybe you need to go back to the warfarin? Or can you try lmwh( low molecular wt heparin, aka lovenox, clexane?) be careful of the filter as they are on recall. Leakeadea (?spelling.) just had hers removed. Good luck , Cindy

1 like
Reply

You may want to go to her profile and check out her post. It was pretty recent. Just sayin. leakeadea , if you tap on that it should bring you to her page that will list her posts, good wishes

2 likes
Reply

Okay sure I'll check Cindy.

Thank you again

Reply

The real problem is that my gums started bleeding while I was on warfarin it never happened before so my doctors said you warfarin is not the problem you may go n get your teeths checked.I went to my dentist got my scaling and one tooth root canal done still I didn't stop.I started taking vitamin C chewables but I didn't work either.

You know what I think..I think my Serum K level has dropped because when I was on warfarin I restricted myself from green vegetables.

Reply

Been there, done that. I understand. I hated the warfarin I’m on lovenox now and am much happier

1 like
Reply

May be should also discuss about lovenox with my doctor.

Thanks for the suggestion Cindy.This community is so active I wasn't expecting such quick responses from everyone.Thank you for listening and supporting all of you. :)

1 like
Reply

Yes have a chat with your doctor regarding your bleeding gums and high bilirubin, your gums shouldn't be that bad!! Yes, go back to the warfarin, if they will let you? Is the high bilirubin new with the xeralto too? Yes, stress and dehydration can effect this.I was on clexane for over 10 years with no problems, so that or heparin may be better for you.

There's always something that stops us in our tracks and causes problems. One step forward, two back!

1 like
Reply

One of the benefits of aps can be bleeding gums. How's your platelets?

1 like
Reply

Yes you are right I should check my platelets.Past month they weren't normal.

Reply

Hi HiraK,

I also want to welcome you to our friendly site where we try to help eachother with our mutual illness!

You have got really good answers already.

I read what you wrote late last night and how impressed I was what you have done so far and also with your new illness.

Hope you stay with us here.

Best wishes from Kerstin in Stockholm

1 like
Reply

Hey

Thank you for the appreciation and support.We all need it because are fighters.

Hira :)

1 like
Reply

I have done well on warfarin, desipite taking it the ‘“wrong way” for many years. When I was diagnosed with essential thrombocytosis (platelet count over 800K) in 1986 the doctor, who had once been a pharma rep, told me to : 1, alternate dosage of warfarin, which for me at that time meant 5mg one day, 7.5 the next — repeat; and 2, eat a lot of green leafy vegetables but refer to web site listings of how much K is in various foods and then try to eat same amount of K per day.

And, despite the fact that this advice broke all the warfarin “rules,” it worked. (One hematologist, who strongly disapproved of this regimen, called it “voo doo blood chemistry.” )

After a few years, my platelet count dropped to normal, I was taken off warfarin, and that week — as in THAT WEEK! — the migraines started. After years of advancing symptoms MRIs revealed the migraines were actually mini strokes, I was finally diagnosed with APLS by an out-of-state heme in 2001, put back on warfarin and all returned to normal.

And with that return to warfarin in 2001 I was resistent to follow the classic warfarin rules as my first adventure with the med in the ‘80s went just fine. So, for many years I stuck to an alternative dosege regimen. And my INR stayed stable. Doctors were amazed that an alternating doseage worked for me, but when shown a record of my INR numbers, they had to concede that for unknown reasons, this bizarre therapy worked for me. But with time I finally tried going to a steady doseage, and the warfarin still worked! ( My motivation was to ease the strong fear my local heme had regarding my VooDoo approach.)

After a consult with Functional Med at Cleveland Clinic last year ( tummy problems and fear that I would end up following my Mom down the Alz path) I upped my green leafy uptake even more (4-6 servings per day.) My INR did drop a bit with more green leafies, but my new (and very good) hematologist said, “The INR drop is more due to your gut being healed by the CC diet. We’ll just up your warfarin and see how that goes.” My warfarin went from 7.5 mg to 9mg, and my INR remains boringly stable.

So — by eating a lot of green leafies I’m sure my K level is a bit erratic ( voo doo blood chemistry is probably an accurate description.). All testing is still boringly consistent. But that original doctor — the one who put me on an alternating doseage? He believed that the body trys to maintain a “normal” INR Of 1. Some bodies are better at doing this than others. His theory was that this varying body talent at compensating for warfarin is why some people can not keep a consistent INR level. So, he advocated the alternating doseage to outwit the body’s natural plan to keep the INR too low.

I have never, ever, EVER, seen any documentation supporting that original doc’s stance. But still . . . . it seemed to work for me.

Gina in West Virginia

2 likes
Reply

Hi Hirak, so sorry you have been thru so much so young, it's amazing what you have achieved despite so many major health issues tho, you should be so proud of yourself!

Can I ask how long you have had your IVC filter in? As Cindy said, I have just had my filter removed after twelve years but it has caused me so many medical issues and I've been told that I should never have had a permanent one put in because I have sticky blood. Is your filter a permanent one or temporary and do you know which make/type? Sorry for all the questions but I hardly ever come across anyone who has an IVC filter like I did!

I am still fighting for an APS diagnosis but have been diagnosed as having "chronic thromboembolic disease", which basically means that I have sticky blood but they just don't exactly know why? Story of my life with all my health issues unfortunately, I'm described as being a very "complex" patient and was recently called an "enigma" by a local respiratory nurse!

I have a history of multiple pulmonary embolisms, multiple DVTs and multiple TIAs and today I was assessed at home for ambulatory oxygen. They say I don't need it at rest because my sats are between 92-100% however my heart rate was at 137bpm while sitting down and just talking with the respiratory nurse, which clearly is well above a normal resting heart rate. For my age my target exercise heart rate should be 120bpm but my heart can reach over 160bpm when just putting my underwear on!

I have been told this is because my IVC filter had grown scar tissue over about 95% of it, so was blocking the returning blood from my abdomen and legs getting back to my heart and lungs. This meant that my blood wasn't get well oxygenated and so my heart has learned to beat harder and harder in order to compensate for the blockage in my IVC vein. I was expecting to be better once the filter came out but I'm actually worse, which means that I may well have exercise induced pulmonary hypertension. This most likely caused by multiple pulmonary embolisms over the years, reducing the blood perfusion to my lungs.

I'm 50 now but had my first diagnosed PEs when I was 37. I had breathing issues and what I now know to be symptoms of sprays of smaller clots to my lungs going back to my early 20s, possibly younger. My symptoms of breathlessness back then were blamed on my anaemia and for a time I was treated for asthma however I believe I was experiencing small PEs but as this was never suspected back then, the relevant tests were never carried out.

All my health issues are still nothing compared to what you have been thru while still so young and if any of my experiences (particularly re my IVC filter) can prevent you from having further medical issues in the future, I would be very happy to share them with you in more detail.

Claire😀

2 likes
Reply

Hey Claire

I have almost same stats as yours my heart also beats really fast n sometimes the beat reaches to 200bpm.you asked me about the IVC filter, my IVC filter is permanent I have it implanted in 2009..but due to continuous blood clotting I've developed venous ulcers in my legs my feet has turned black and it's so embarrassing sometimes so I wear stocking everytime I go out.temperature in Pakistan reaches upto 50degree Celsius in summer still I have to wear something to hide those scars because sometimes people and my own students get scared of them.

It's just how I've made my lifestyle with APS just to hide things when I'm out because here in my country taking oxygen through a concentrator out in market or anywhere is considered like a taboo and people literally turn their heads around just to give me a sympathetic and pity look which I really don't appreciate at all.

I want to tell everyone out there that We APS patients are fighters fighting battles that no one knows..each day we wake up we defeat our disease each day we get out of bed we have succeeded one more day.We all deserve appreciation for hanging in there..because only we know what we go through each day with it.

Love to all.

2 likes
Reply

Well said!

2 likes
Reply

Hirak,

On my goodness, I'm so sorry for what you have been thru and what you must deal with every day as well, you are so incredibly brave and an inspiration to anyone with an invisible but oh so life changing and altering medical condition!!! My 💞 goes out to you.

Hasn't anyone talked to you about removing your filter? Thanks to my blocked filter and in part to my Ehlers Danlos Syndrome (a connective tissue disorder, so I have very weak collagen and body tissues), I now have incompetent veins in my legs, where the valves don't work and so the blood flows backwards but I've only had very sore lower legs with hardened skin, which can itch terribly and I've scratched till they bleed sometimes but what's happened to your legs is so much worse, I'm so sorry😞.

The surgeon who oversaw my filter removal is one of the top vascular surgeons not just in the U.K. but in Europe too and I know I'm very lucky to have got mine out because the interventional radiologist said it was the worst case of filter erosion, embedding, clotting and scarring he had ever seen. The one positive thing at the moment to having it out, is that my leg and ankle swelling has gone down.

I wonder if you could have your filter taken out would it then prevent any further damage to your legs?

With regards to your high heart rates, does it still go that high when using your oxygen? I think that my heart rates would go higher if it wasnt for the fact that I've been house bound. I'm so happy that I'm finally being given oxygen, I will be able to get out of the house and have a walk, something I havent been able to do for over a year and a half!

Kerstin,

My two positive APTT results are being ignored by the APS specialist I've recently seen, in fact I was spoken down to and belittled by her in front of other doctors and told that I have to take Apixaban because I don't have micro clots! My head MRI states I had "micro clots" but she chose to ignore that too. The CQC (The Quality Care Commission, who inspect and rate hospitals and care homes etc in the UK), are following my complaint because they are so appalled by how I've been treated.

Thank you for asking after me tho.

Cindy,

Thanks so much for alerting me to Hiraks post, it is so good to have contact with someone else with an IVC filter but its so terrible what she has had to go through tho😮

1 like
Reply

Hi leakeadea,

You are saying you are still fighting for an APS-diagnose. You have told us that you have had two Lupus Anticoagulant-tests positive and then you should have a diagnose of APS.

Some of us have negative antibodies from time to time but a Specialist of autoimmun illnesses who has had patients like us before should know that.

Do you today have a Specialist who especially knows APS among other autoimmun illnesses? Hope so. What about your anticoagulation? Warfarin?

Best wishes from Kerstin in Stockholm

1 like
Reply

Welcome Hira.

It takes a very special person to deal with the devastating medical problems as you.

You are an inspiration to many other people, especially young people.

I hope we can offer something helpful to you.

With good wishes,

Ros

2 likes
Reply

Thank you very much.

It's a privilege to be a part of this community.I'm so happy.

Regards

Hira

2 likes
Reply

I just wrote this and it disappeared so trying again. I know you are excited and are getting a lot of information. It is wonderful to not feel so alone....Please be sure to rest.

2 likes
Reply

You’re getting a lot of info I hope you are also resting. I know you must be excited. It’s so wonderful not to be alone with this, Condy

2 likes
Reply

HiraK how are you?

Reply

You may also like...