Blood thinners : Hi everyone, I have lupus and I’m... - LUPUS UK

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Blood thinners

LilyMistri2 profile image
19 Replies

Hi everyone,

I have lupus and I’m going through the menopause. In March I found out I have a pulmonary embolism and a possible heart murmur. I have been on blood thinners for 4 months now. I’m loosing a lot of hair on my head but it’s growing longer on my body, eye brows and eye lashes. Is this the blood thinner or the menopause? Does anyone take a blood thinner that doesn’t have these effects? Please let me know.

Thanks! X

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LilyMistri2
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19 Replies
IChoose profile image
IChoose

I don't know but I have a family member with lupus who may have had a serious reaction to fenofibrate (not sure re spelling). It manages triglycerides. It includes nausea and loss of muscle.

I would get bloodwork and assume anything is possible until you know for sure.

IChoose profile image
IChoose

I will say the hair thing can be consistent with menopause based on my experience, but I don't have your medical issues.

Jumper99 profile image
Jumper99

Could also be Due to lupus, so you have 3 choices. Sorry, no help at all! Did they test you for Antiphospholipid Syndrome when you had your PE?

LilyMistri2 profile image
LilyMistri2 in reply toJumper99

Lipids were fine. And so was my inflammation. Not sure how the pe happened at all.

Jumper99 profile image
Jumper99 in reply toLilyMistri2

Antiphospholipid Syndrome is another autoimmune disease which can occur in patients with lupus. It has specific blood tests, not those for testing lipids, it doesn’t change your lipids but your immune system attacks phospholipids. It causes your blood to clot more easily than it should. So that is why I was asking to check that they have tested you for it, because you have lulus and your blood has clotted to give you a pe.

LilyMistri2 profile image
LilyMistri2 in reply toJumper99

I was told many years ago that I had vascular lupus as opposed to antiphos. But I’m sure new bloods will tell if new things are going on.

baba profile image
baba in reply toLilyMistri2

Only if they order the correct tests

LilyMistri2 profile image
LilyMistri2 in reply tobaba

Very true

Kell12 profile image
Kell12

I have been on warfarin since 2011, I have not lost my hair with them, but have done so when having a flair of lupus, I also know my hormones effect my symptoms, so could be down to the menopause effecting your lupus. x

PMRpro profile image
PMRpro

Being seriously ill can cause hair loss a few months later too - and a PE is serious.

My anticoagulant doesn't result in hair loss or strange growth as far as I can tell, I currently look like the wild woman of Borneo as I haven't summoned up the enthusiam to get it cut (our hairdressers have been open for 2 months so no excuse!). Are you on other medication?

LilyMistri2 profile image
LilyMistri2 in reply toPMRpro

Thanks. Yes I’m on pred, Mycophenolate, carbamazepine and the dalteparin

PMRpro profile image
PMRpro in reply toLilyMistri2

Then you may be able to blame the strange hair growth on the pred, for some people it doesn't help head hair either though I don't have a problem. Carbamazipine has been implicated in cases of hair loss and it is a listed effect of mycophenolate. So the least likely is the anticoag!

Just checking - have you had your thyroid panel run since the hair loss and rest of extra growth? I have lost all my hair several times before - as a kid and after babies. It turned out I had autoimmune hypothyroidism - which can also cause lots of extra body/ facial hair believe. Worth looking into if it hasn’t already been thoroughly tested for antibodies, free T3 and 4 as well as TSH.

LilyMistri2 profile image
LilyMistri2 in reply to

Thanks. I haven’t had any blood tests since the pandemic started in March here in the UK but am due some. I shall ask for the extra tests.

LilyMistri2 profile image
LilyMistri2

What have you been taking to help in the way of vits and minerals ?

Star13 profile image
Star13 in reply toLilyMistri2

I take Vit D spray, magnesium spray, Vit C 1000mg, Zinc 30mg and B12 injections. I think the zinc helps.

LilyMistri2 profile image
LilyMistri2 in reply toStar13

A guy I know who is going through hair loss was told biotin, zinc and selenium. Have your vits been helping? Are you still on dalteparin? I’m worried that at my review I’ll be told to continue or switch to warfarin which also doesn’t have a good track record with hair.

LilyMistri2 profile image
LilyMistri2

Good to know about the warfarin. What is the other thinner you mentioned? I think I’ll do the zinc. It seems to be on the Internet too.

LilyMistri2 profile image
LilyMistri2

I’m hoping that if I have to remain in blood thinners that I can change to another group that will not have these side effects. They may only allow that further down the line though only.

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