Lupus

[Lesi]

My first lupus test came back positive also ANA positive. My latest lupus test was negative but ANA remains positive. Would the steroids I was on at the time affect my blood readings. Many thanks xxxxxx Also have F M and COPD.

[Purpletop]

Positive ANA is not an indicator of disease activity, so I wouldn't say that the steroids would make a difference in ANA reading necessarily. Steroids would affect the readings for inflammation and infection markers, ESR and CRP, for example.

[Yangon]

Does it mean lesi has no more sign of sle? If so, happy for you! You will be a hero for us.

Is there any chance that the results were wrong or the judgement was wrong?

[Nightjar]

As it is for very many lupies, tests keep changing - they can be positive one time, negative the next. Once, when developing a full flare two days after tests - it turned out nothing had showed in the blood!?!! After 50 years with this condition, I know I have lupus whatever the tests say. Flares, as I know them, hit out of the blue with no particular pattern - seems to be part of the picture when 'living with lupus.' I was told by the specialist who diagnosed me, that if lupus has showed in the blood once - it is still there even if not always showing on tests. However, we live in hope... xxx

[Yangon in reply to Nightjar]

In 50 years of time , did you have many flares ? How often was it? Does the flare worsen times by times ? Because I am very new to it and now feeling ok . My hemoglobin went down to 5.3 and platelets went down to 47 in march . Then diagnosed as lupus , but now ok. I am wondering is there any one with very few flares in life . Thx

[Hidden in reply to Yangon]

Each and every one if us is different. My lupus developed slowly over years, I can go back to my youth - headaches, sudden fatigue, aches that went as quickly as they came, all put down to stress, depression or a virus of some kind. Nothing showed in the standard gp blood tests. It was only when I was pregnant in 2001 that it showed clinically - swollen optic nerves but the neurologist predicted MS. I had no other issues really, just carpel tunnel type symptoms which I thought was due to picking up the baby. Anyway, in 2006 it hit and I was hospitalised and treated for CNS lupus. I've not worked since regardless of meds, I feel like I'm in a constant flare, I've never recovered but my bloods are virtually always normal plus my ANA is only ever mildly positive. My rheumy told me that lupus leaves damage and my consultant at St Thomas' says there isn't a specific lupus test, which is why you have to have 4 out of the 11 conditions to be diagnosed with lupus.

There are no real answers or absolutes and no cure to date. We all play our own lupus game. All the best and I hope you stay on the up.xx

[Yangon in reply to Hidden]

Thank you for explaining me . I am still learning about it and unfortunately in my country we don't have a special octor for lupus. So, I am going o Singapore every month or treatment and the rest time when I back to my country I need to take care myself and do the self learning through Internet . Thank you again.

[Nightjar]

Taking into account that we are all different, flares can differ very much from person to person. In my case, I have had times with no flares at all and other times with one symptom followed by another (..the knee one day and the shoulder the next!). I didn't keep a diary, so don't remember exactly - but I was known to be 'sensitive' ..to infections, various foods, the weather, etc, ever since childhood.

I was well for several years before my first child (at 25) but unwell a lot of the time (miscarried several times and had bad fatigue and lupus-fog) before my second child (at 28).

Lupus is known to be more active in connection with hormonal changes - and that has fitted in with me. I had a number of flares around the menopause, when I had numerous symptoms a lot of the time.

However, as many lupies get diagnosed early nowadays, this may help to keep your symptoms/flares under control - and hopefully you will be ok for most of the time.

Some people say the key to stay well is to pace ourselves, which is easier said than done ..at least for me. Good luck! xxx

[Yangon in reply to Nightjar]

Thank you for the answer . You give me hope for a chance of a good life . Thank you .