Newly diagnosed lupus positive

[Shaz002]

Hi everyone. I've been having blood clotting issues for the last year and been under heamotologist. My blood takes longer to clot and I've been having prolonged periods. My GP is adamant it's not a Gynea issue that's it's a blood disorder and I need to be under heamotologist. Anyways after many blood tests my heamotologist said I am one of those people who will always have deranged bloods but she did a lupus blood test on me which came back positive.

I have done a bit of research on this but I am finding it hard to understand. I do have suffer from the common symptoms like tiredness and body aches but I always thought that was because of my job (I'm a full time healthcare assistant).

Is anyone able to explain to me what I'm to expect from lupus so I can have a clear understanding of what this is and how I should be managing it. I have tried reading about it on google but still not understanding the concept of this. Xx

[baba]

"lupus blood test on me which came back positive"

Do you know what test was positive?

Reliable information on Lupus UK website

lupusuk.org.uk

[Shaz002]

Oh I'm not sure now. I cant remember it specifically I'll get it clarified but I remember when I asked her about the test for lupus she said its positive. Will get it clarified.

[Redfox25]

Hi Shaz

Welcome to the group!

Regarding your question about what to expect from lupus, I think the answer would change from one person to the next. For me it is sensitivity to the sun, rashes, joint pain, fatigue, fevers.

There are many types of lupus and it'll affect people slightly differently. I was in denial for a while when I was diagnosed even though I'd pretty much diagnosed myself and requested the bloods. It takes some getting used to.

Have a look at the lupus uk website it has great resources on there. And get a referral to a rheumatologist. And keep talking on here. Theres a really good Facebook group too which is very active.

[Paul_Howard Partner LUPUS UK]

Hi Shaz002 ,

Welcome to the LUPUS UK Community Forum.

As you have a clotting disorder and the referral and test was with a haematologist, is it possible that the positive blood test you had was for 'lupus anticoagulant'? If so, this isn't actually a positive test for lupus. This test has a confusing name, but it is actually for a different condition called antiphospholipid syndrome (APS). You can read more about this at aps-support.org.uk/about-ap...

Has your haematologist advised you what they are planning following this test result? Have they discussed any further referrals of treatment?

If it is lupus, as Redfox25 has said, it is very difficult to provide a prognosis for any individual because the disease varies a lot in presentation. It is worth bearing this in mind when reading about lupus - there are a lot of possible symptoms, but most people won't experience the majority of them. The list of symptoms is long because it reflects the different experiences of many people.

[Shaz002]

I just got a copy of my results but couldn't get through to having a consultation. Yes it says lupus coagulation

My apologies as I was only going the by word my GP said which was "lupus positive" as I stated previously I have no knowledge on this subject.

I wasnt aware of the APS

Sorry if I came across misleading and thankyou everyone for your help and advice

[Redfox25 in reply to Shaz002]

No worries! Best of luck xx

[Chicky12]

Hi, I would get tested for ITP, what you are describing sounds like what I went through when I was 13.