Recurrent DVT's whilst on Clexane

[Mollypops1]

Hi, I have no idea if I am in the right place, but if I run my problem past your eyes you may be able to redirect me. My daughter has a chromosome defect and I wondered if this had anything to do with her recurrent dvts even whilst on heparine. She has had a stent fitted in her groin and the last dvt, although inconclusive, appeared to become a pe. We are seeing the haematologist next week and prior to seeing her, I wondered if anyone else had chromosome disorders? I would like her to have another chromosome test prior to changing her twice daily clexane injections to tablet form. Last time Rivoroxaban made her hair fall out. Sorry in advance if this is not the right lace to ask the questions. thank yo in advance for any help.

[MaryF Administrator]

Hi this forum is specifically for those with Hughes Syndrome/APS. Having said that is not unusual to have several conditions. If you wanted to get her tested these are the three tests your Haematologist needs to do.

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

Some people also have a history of various autoimmune diseases in the family, (past and present members), this can include thyroid issues. Some also have a blotchy rash called Livedo Reticularis.

Mary F

[lupus-support1 Administrator]

I am very sorry to read about your daughter. My advice would be to make an appointment with her doctor and specifically ask whether her chromosome defect is related to her DVT. If the GP is unable to answer, the GP will be able to direct you to someone who can answer this important question.

It may be they are unrelated, but your question is an important one. If you know the name of the chromosome defect, you might be able to research this yourself. However, please be careful using the internet because websites are not regulated.

Apart from the physical worry of your daughter's condition, this must also have a psychological strain as well, for your daughter and you. (You don't say the age of your daughter, whether she is a minor.) Therefore, seeing your GP is important for you as well.

Even if there is no connection with APS/Hughes, if you need to talk, you can PM me here.

With good wishes to you and your daughter.

Ros

[Mollypops1 in reply to lupus-support1]

thank you for responding as I appreciate I'm potentially in the wrong place. I appreciate your comments and will request this from the haematologist on Monday as i have already asked her gp. My daughter is 38 with moderate learning difficulties, hence I am power of attorney. Her dvts have caused horrendous side effects and worry. Thank you again, I feel the chromosome defect is worth exploring. I am very nervous about her taking a tablet that could interfere with her platelets and potentially become life threatening in other ways. much appreciated. Jen