Clexane heparine: I have been change... - Hughes Syndrome A...

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Clexane heparine

salva76 profile image
9 Replies

I have been change from xarelto to clexane 15000ul a day, they say i will improve with my neurology problems ( migrains, headache, lost memory, spams,,some times i feel my face slept) my gps say the heparine is the most strong anticoagulsnt and i can improve my symptoms with heparine. But i am afraid about secundary effects like osteoporosis, low level of plaquetes. ..is someone with problems who has been taken heparine for long time???? I am having 150mg or 15000ul a day, my weight is 94kilos. Is it to much dosis? I am scared .thry put me for 6 months without any monotorize control...

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salva76
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Manofmendip profile image
Manofmendip

Hello salva

I was on Warfarin (Coumadin) but am now on Fragmin (LMWH - low molecular weight heparin) and have been for over two years. I am told that LMWH heparins do not cause osteoporosis and I have had several blood tests and i do not have low platelets either.

We are not doctors on this site and we cannot give medical advice, so you must discuss dosing with the doctor managing your APS. Heparin dosing is usually by body weight.

From my experience I would not go back on Warfarin, Fragmin makes me feel much better.

Best wishes.

Dave

SueLovett profile image
SueLovett

I have been on heparin for 5 years with no obvious side-effects, I hope this will put your mind at rest.

Take care

MaryF profile image
MaryFAdministrator

Hi, I hope you will feel much better on your new drug, and take the time to get used to it, where are you located and who is managing your Hughes Syndrome/APS? MaryF

salva76 profile image
salva76 in reply toMaryF

I am so glad your quick answer..you make me feel better...you are so kind...

Some doctors say to me it is a trial maximum 6 months because it produces osteoporosy, I argued with him ...

I hope my neurology problems will dissapear soon.the worst it is when i feel my face slept. It usually happens when there is a big change of temperature.

My gps is now in alicante it looks know the huges syndrome..anyway we just create a foundation here me and 3 members more. We are waiting papers.

Besides we got a doctor in madrid who wants to do a clinical study with apheresys for aps...but we are working very hard because we need to do a lot of papers and get private money for the studies...i let you know how is working...

Thank so much....

For your hep...

Your are the best

MaryF profile image
MaryFAdministrator in reply tosalva76

Ok you will get an answer some time from 'InSpain' who can help you as she lives there! In Spain. MaryF

Salty profile image
Salty

I have been on LMW heparin for 3 1/2 years, also no problem. In combination with plavix, I have no neurological symptoms, but they were severe before. The older heparins cause osteoporosis and a much higher incidence of thrombocytopenia which are much less common with the newer LMW heparins like fragmin. Hopefully, your symptoms will improve with LMW heparin.

InSpain profile image
InSpain

Hello Salva.

Don't worry. I have taken clexane for three months at a time without any problems. My weight is similar to yours and I was injecting 60mg in the morning and another in the afternoon - 120mg in total daily. They know how much you should take by your weight. In fact I felt much better when I took it and many of my problems such as brain fog, migraines and pain in my joints got much better. It was the only time that my platelet levels were good too! If you are worried about the risk of osteoporosis ask your GP to send you for a bone density scan. He can then use this as a point of reference in the future. You could also ask if you need to take a calcium supplement. I asked for both and feel like I don't need to worry as much now.

If you want to know anything else send me a message on this forum or via facebook.

Best wishes from here InSpain

Hola Salva.

No te preocupes rey. He tomado Clexane por tres meses a la vez sin ningún problema. Mi peso es similar a la tuya y yo estaba inyectando 60 mg por la mañana y otra por la tarde - 120 mg en total diario. Saben cuánto debes tomar por tu peso. De hecho, me sentí mucho mejor cuando lo tomé y muchos de mis problemas, como la niebla lupica, las migrañas y el dolor en mis articulaciones conseguí mucho mejor. Fue la única vez que mis niveles de plaquetas también eran buenas!

Si estás preocupado por el riesgo de osteoporosis preguntarle al médico de cabecera que te envías para una densitometria. Entonces puede utilizar esto como un punto de referencia en el futuro. También puedes preguntar si es necesario tomar un suplemento de calcio. Le pregunté por ambas y siento que no tengo que preocuparme mucho ahora.

Si quieres saber algo más envíeme una mensaje en este foro o través de Facebook. Ánimo rey.

Un beso y un fuerte abrazo de mi parte.

salva76 profile image
salva76

Thank you so much.where are you from?? Which doctor is watching you? Do you know we have created a foundation?are you in facebook sindrome antifisfolipido?

Thank you for your answer

InSpain profile image
InSpain in reply tosalva76

Hombre soy Mari hemos hablado por teléfono, recuerdas? Si, tengo amistad por facebook con Sindrome Antifosfolipdo. Te mando un mensaje por facebook

I'm Mari we talked on the phone, remember? Yes, I have facebook friendship with Antiphospholipid Syndrome in Spain. I've sent you a message via facebook.

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