I'm terrified

[Lorraine08]

I've just been to my haematologist 3 months after my initial blood test and scans.

She said there were a few abnormalities in my results so they would like to repeate them. I was unaware I was being tested for lupus and this is the bloods they would like to repeat additionally to diagnose APS.

She also wants me to see a gastroenterologist following ibs symptoms and a history of leg ulcers. I also need an ultrasound for excessive fluid found on the pelvis on my ct scan.

I'm 22 with a history of 1 x dvt and 2 x pe's.

Prior to this I've never been on medication and as I've been reading up on lupus I'm nervous and the amount of medication. Do you have to take medication? I've gone from no tablets at all to a possibility of loads. And I have to wait 3 months for my next appointment and results.

[Paul_Howard Partner LUPUS UK]

Hi Lorraine08 ,

Welcome to the LUPUS UK Community Forum. I'm glad you've found us and I hope that we can help to reassure you.

You've mentioned that your haematologist was testing you for lupus, but I wonder if this was actually the 'lupus anticoagulant' blood test? If this is the case, it is not strictly a test for lupus and is actually used for the diagnosis of APS. Unfortunately it has a very misleading name; it is called the 'lupus' anticoagulant because it was first discovered in lupus patients. Around 30-50% of people with lupus test positive for this antibody, but it also occurs in people without lupus. It would be worth checking to see if this is what the investigation was for. If they were testing for lupus, the blood tests they would normally do include antinuclear antibodies (ANA), anti-DNA antibodies, inflammation markers (ESR and CRP) and complement levels (C3 and C4).

Most people with a diagnosis of lupus are on some form of medication. In many cases this is just the antimalarial drug, hydroxychloroquine. This is taken once or twice a day and is generally very well tolerated with few or no side effects. People who are prescribed this have a full eye examination before starting it and then every year after being on it for five years to prevent the risk of any retinal damage which is a potential rare side effect. Many people with lupus manage well with just this medication and do not need any others. It just depends upon the symptoms and severity of disease.

If you need any more information about lupus or LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info.... However, I would probably recommend not getting ahead of yourself and waiting to hear the results from your tests and investigations.

[Krazykat26]

Hi Lorraine08 and welcome!!

Paul has given u plenty of info n I haven't really got anything more to add except that your being well looked after by the sounds of it!! Your haematologist is spot on by the sounds of it.

Please try not to get too stressed out because stress causes all kinds of problems in our physical health. U r very young n this must be a very worrying time for u..u r clearly ill n part of the problem is not knowing what is happening but fortunately we have the internet n u can talk about any fears n worries with us on this forum...u are not alone 💐xx