Lups anticoagulant and the combined pill

[Daisy50]

I found out I am lupus anticoagulant. My Gynaecologist has told ne I need to take the combined pill for another condition. Is thete anybody else out there taking the combibed pill when there are lupus anticoagulant as I am a little worried.

[Yllek]

Hi

Do you see an APS specialist (haematologist/ rheumatologist)?

You need advice from an APS professional to answer this question.

For me personally, I am lupus anticoagulant positive, and I was not allowed the combined pill or any other pill with oestrogen due to the increased clot risk.

I would personally be asking for a referral to a knowledgeable APS Dr for another opinion before starting a medication that’s known to be an increase risk to APS patients.

Kelly

[Daisy50 in reply to Yllek]

We don't have any where I am from. We only have a visisting one from the uk and we dont get on. He said I didn't have a rare condtion and I do I had to go to the uk private and in fact diagnosed me with 2 rare conditions

[Sal0712]

Hi there

I totally agree with Kelly as I’m exactly the same! I wasn’t allowed the combined pill as it was a leading factor when I had clotting on the brain. I now have the marina coil fitted which I’ve had for nearly 9 years now.

Sally 🙂

[Daisy50 in reply to Sal0712]

Sadly the marina coil isn't an option for me as I have really bad ashermans

[debiann]

I was told ombined pill not suitable.... so have the marina coi....my daughter has a progesterone only pilll

[Daisy50 in reply to debiann]

I can't have the marina coil as I have very bad ashermans

[debiann in reply to Daisy50]

ask about the progesterone only pill.....my daughter also has pcos and it helps with symptoms from that too

[Daisy50 in reply to debiann]

Thank you I have spoken to my Gp who has now taken me off of the combined pill and put me on the progesterone only pill

[HollyHeski Administrator]

Does your Gynaecologist know you have APS? I would suggest you talk to them again or find a specialist in APS.

[Daisy50 in reply to HollyHeski]

Yes I have told him over and over again but he doesn't listen.

[Daisy50 in reply to Daisy50]

I am not seeing him for 4 months.

[HollyHeski Administrator in reply to Daisy50]

I would write to him then and state your concerns, requesting an answer to the safety of this drug with APS, and maybe a safer alternative?

Maybe involve the doctor that has diagnosed you with APS too, as they may have suggestions too?

Alternatively seek an appointment with an APS specialist either rheumatologist or haematologist?

You have every right to voice your concerns and in due respect require answers, you need to be reassured by the medical profession that you are going to be ok?

[Jumper99 in reply to HollyHeski]

Hormone treatment is generally not a good idea with APS and I agree with the others that it needs an APS specialist to look into it.

Writing to your gynaecologist is a good idea and I would print off some information about APS and include it in with the letter. Your gynaecologist needs to realise how serious APS can be and that increasing your likelihood to clot by adding in the Pill is not usually acceptable.

Can you get hold of the doctor in the UK who you saw and ask them their opinion or ask them to talk or write to your gynaecologist?

[Daisy50]

I have been to my GP who agrees with ne he should never have put me on the combined pill she has now taken me off it and replaced it with the mini pill instead

Thank you all for you help I am very gratefull. I tried to voice my concerns with the Gynaecologists PA on the phone also about another problem I am having which the GP said I had to inform him and all I got was your seeing him in 4 months. I explained that It was important I find out.