always feel tired with Antiphospholipid syndrome?

[swirl]

Hello! I'm writting from Spain. APS is not very well known here...I'm trying to share experiences with other people but I can´t find anyone . Any foundation here. One of my questions is: Do you feel always tired? Despite of taking anticoagulants? suffer from migrain or memory loss ?

[MaryF Administrator]

Hi there, yes very bad tiredness, and migraines etc and yes memory loss at times which can sometimes improve with the right level of blood thinning. Is spanish your first language?

Hola, sí, cansancio muy mal, y las migrañas, etc y sí pérdida de memoria en momentos que a veces puede mejorar con el nivel adecuado de adelgazamiento de la sangre. Es el español su lengua materna?

(Prof G Ruiz-Irastorza MD);. St Joseph Hospital

This may be a good place to start:

Esto puede ser un buen lugar para comenzar:

Mary F x

[swirl]

Sí, el español es mi lengua materna.

Últimamente obtengo resultados de un INR de 1.8 o 1.9 en punción venosa, pero el Coagucheck me dice que tengo siempre un INR superior a 2.3.

No sé si eso me está influyendo, pero mi internista me dijo ayer que no tiene explicación para lo que me pasa y me ha derivado al neurólogo porque aún sigo teniendo parte de un trombo cerebral en senos venosos

Yes, Spanish is my native language.

Lately I get results of an INR of 1.8 or 1.9 in venipuncture, but Coagucheck always tells me I have an INR greater than 2.3.

I do not know if that is influencing me, but my internist told me yesterday that no explanation for what happens to me and I was referred to a neurologist because I still have part of a cerebral venous sinus thrombosis

[swirl in reply to swirl]

I don´t know if you can speak spanish too. If it´s easier for you I can try to continue in English.

I´m a Nurse. I was diagnosed one year ago after a very big brain trombosis. My antiphospholipid antibodies are always very high (around 240). Here in Spain we take SINTROM (Acenocumarol despite of warfarin). Recently, I found some information (from Roche too) about discordances between Coaguchek and blood test. My hematologist hadn´t heard about it, but now, She´s starting to believe it. As a nurse, I'm trying to promote a study with the little group of people with APL comparing blood tests and coaguchek.

Lately, my blood tests are showing an I.N.R lower than 2. I am very worried

[MaryF Administrator in reply to swirl]

Absolutely! This is a site in English, Hello again, lots of people on here will talk to you about INR and they will help you. <br style=""> <br style=""> Also as a nurse if you are doing this very useful study with blood tests: You may want to write to Professor Hughes directly at London Bridge Hospital,London.: Or to St Thomas' Hospital, London. Also our charity itself may be able to help with some more information. You are most welcome on here. Let us know what further help you need with your study. <br style=""> <br style=""> Mary F x

[MaryF Administrator in reply to swirl]

ps I do not speak spanish. It was useful to try out to see if communication was good in other languages with google translate.

ps yo no hablo español. Fue útil para probar a ver si la comunicación fue buena en otros idiomas con traductor Google.

[jetjetjet]

HI Swirl and welcome - theses things you mention are very common ,i started in 2009 and they were present for quite awhile. I in the states, in New Hampshire. it took awhile to get started in making contacts but you hit on a gold mine here. dont be shy , you will meet alot of people whom are very knowledgeable , been the route and understand your plight. hope to hear more from you in the future ------------------------ JET.

[swirl]

Thank you very much both of you for your kindness and information. It is true. I found a gold mine here, It was my first thought!!

[MaryF Administrator in reply to swirl]

Glad you are finding this site to be helpful to you, and welcome. Mary F x

[kathyD64]

Hi Swirl welcome i too am a nurse here in the uk and also suffered from cerebral thrombosis - whilst pregnant and again after pregnancy as they stopped my warfarin. Your ACL count is extremly high - after my initial sagittal, sigmoid and other sinus thrombosis's my inr was kept 3.5-4.5.

i was then fine for a good decade but since a flare after flu with other autoimmune condtions being added i struggle for past year to be listened too as the haematologist back in 1990 had retired and now it seemed the focus was on preventing haemorrhage so they tried to say my inr was fine to be at 2 but i did also dip to 1.4 so had major problems - transient fortunately that included several TIA's. so now my inr target is 3.5.- 4.0 it makes a huge difference to how i feel when it falls even to 3.0 my brain gets extremly foggy and temple and other odd head pains with increased fatigue makes me feel quite unwell.

I have venous sampling only but roche did advise me whilst my antibodies are high they could not guarantee coaguchek would be totally accurate so despite wanting the freedom self testing offers, i have put that on hold at present.

Hope the person mary has suggested can help you - mary is a mindful of information and also it seems understands spanish - she's a clever one she is

kathy xxx

[jessielou]

Hi swirl

Welcome and glad you found us!! I quite often feel very tired but usually feel much worse when my inr is too low! I like my inr to be up around 3, i would prefer it to be higher but i am trying to convince my docters of this and this takes time!! Inr of 2 and below is way too low, I'm not surprised you are worried, keep trying with docter to get it higher!!

Pretty sure I recall others on the forum from Spain, so maybe they'll be in touch.

I don't self test my inr, but my gp's practice use the Roche coagucheck finger prick testing. Will be interesting to see what your study shows. Professor Hughes, would be interested too, as Mary suggests.

I hope you're feeling ok at the moment. We here to help if we can!!

take care, gentle hugs, love Sheena xxxxxx

[katherineR]

Hola Swirl

Yo soy the Colombia tambien tengo el sindrome y encontrar pacientes aqui con esta enfermedad no es para nada comun, Te cuento que antes de enterarme que tenia el sindrome tuve algunas perdidas de memoria, tal vez dos veces, pero luego de tres perdidas de embarazo, tuve presiones arteriales muy altas y ademas, luego dela ultima perdida hace 3 meses me habia inciado unas migrañas terribles y mucho cansancio pero bueno tomo prednisolona, cloroquina y aspirina, pero ademas he iniciado una terapia de extracto de jugosde verduras y frutas (de 8 a 12 vasos diariaos) y en la primera semana las migrañas y el cansansio exesivo desaparecio.

I am Colombian and I suffer APS too, he is not easy to find patients with this syndrome, Before I knew I suffer APS I sometimes had memory losses, s two times happen, them tree miscarriage, I had blood pressure very high levels and after the last miscarriage around 3 months ago, i started to feel migraine and tiredness, My rehumatologist prescrip Prednisolona and Cloroquina,but actually I start to make a juice therapy with vegetables and fruits extracts (around 8 and 12 glass per day) after first week migraine and tiredness disappeared.

take care

Espero comentarios

Katherinex

[ltespain]

Hi Swirl - where in Spain are you?

I am with an excellent consultant in Princesa but we can reference very fast a lot of other specialists who think and follow the path of St Thomas' by asking Dr Khamashta there for recommendations as he studied here in Spain and comes here frequently for conferences.

Got to keep this brief for now but wanted to put hand up as one of those based in Spain [been diagnosed over 14 years and been here for 11 of those as well as visiting St Thomas]. INR has been a major fight and I finally got switched off Sintrom last year for Warfarina after 2 specialists at Princesa demanded it (though Haemotologist refused) - INR now totally stable. I also have Coagucheck XS and my results are always within a fraction of my blood draws BUT the machines used at GP Clinic is usually at least 1 point off both results.

You can email me directly or I'll try to keep an eye on this thread to see if can help more.....

All the best

Louise

[swirl in reply to ltespain]

I'm on Málaga!! are you in Madrid?

[ltespain]

PS I do indeed speak Spanish but you seem able to cope perfectly in English

[jessielou]

Hi Louise

Thank you hon, brain fog means I forget, but I knew somewhere in my memory there were others in Spain. I hope there will be more around the world, so awareness and support spreads.

I wish I had studied languages more intently now as so many need support, and sadly it's just not there. YET!! We are getting there slowly but surely.

Now then how to convince the dinosaurs in the medical profession around the world that diseases like ours need correct treatment!!! hope you feeling well.Take care, gentle hugs love Sheena xxxxxx

[swirl]

Thank youu very much to all of you. I found a light in my way when I found you. Now I feel I´m not alone, and I'm not becoming crazy with the brain fog and all that stuffs.

I'm translating some of your words to collect evidences for my Doctor.

Do anybody have a scientiffic article or a good source where mentions that cognitive impairment or tiredness??

and what about differences between Coaguchek and venous blood tests?? do anybody have something?

[MaryF Administrator]

Hi there

bioportfolio.com/resources/...

sst.dk/publ/Publ2009/MTV/bl...

Also look at the papers on Hughes Syndrome Foundation website

Hope this helps, other will help further as I am so far only on aspirin!

Best wishes

Mary F

[WayneL]

Hi, Swirl.

As my daughter recently commented "because so much of this disease is invisible to others, it's no wonder they look at you as if you're some kind of alien!"

I guess I have to agree with her on this, as we have been struggling over here to get her some form of care.

At the moment it looks as if we've finally started down the right path.

hope you are well, and welcome to the community.

Wayne L

[WayneL]

Hi, Again.

Sorry, but in answer to your questions, the answer is yes to both.

My daughter has very frequent migraines and is very fatigued at even the smallest physical exertion. Some days, even going to the kitchen from her room, will put her back in bed for a few hours.

Wayne L

[white1432012]

Hi I also have APS yes I suffer from constant fatigue sometimes it is overwhelming! Also I get terrible headaches and very dizzy spells which cause me to wobble and fall. Im on therapeutic dose of tinzaparin (highest dose) although still get all these awfull symptoms, ive learnt to live with it although it still comes at the most awkward moments when you've arranged to go somewhere or do something (typical)

Hope you get sorted out with your tiredness im yet to get some effective pills too.

Take care

Caroline x