I posted a while back about most of my back story and that I was being referred to a rheumatologist, so I won't go into all that again. Anyway, finally got seen by the rheumy, this is what she wrote to my DR :
The repeated lupus anticoagulant test was still positive. The auto antibodies screen has shown the presence of SMR RMP and chromatin antibodies which are seen in lupus. The double standard DNA and complement levels were normal which would suggest there is no serologically active lupus. The APTT was high, in keeping with the lupus anticoagulant test. As Stacey isn't experiencing any clinical features of lupus I do not think that these antibody tests require any further management at the current time. I will forward Stacey a leaflet about lupus so that she is aware she will have to contact her GP immediatley should she experience any symptoms of clinically active lupus lupus.
I wasn't told much more really, just given a leaflet about APS syndrome and also fibromyalgia and sent on my way. But, in the past eight weeks, I have developed redness on my cheek bones, sometimes it's only very light, other times it's very bright and obvious. Secondly, I've been getting weird rashes on my arms. Well, they're more like bumps. On my legs, it's almost like a pimple with a red ring around it. They just keep randomly appearing. I wondered if anyone could tell me if these rashes or bumps may be a sign that Lupus has become active? I was told my Dr that the rheumy says I have antibodies that are found in luous but because I was haing no symptoms it's classed as 'inactive'.
Thanks for taking the time to read! Any help would be much appreciated. I've posted some pictures below of my rash on my face, my arm, and the strange pimples ones on my legs. Thanks!
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stacieann1989
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With autoimmune disease it often takes awhile for it to "show itself." (For instance, I've had what ever I have for almost 40 years, and they are calling it lupus-like undifferentiated connective tissue disease.) It also depends on the rheumatologist. Some will treat you earlier on than others. If you are feeling badly, as a patient, I think you should be asking about plaquenil which treats both lupus and APS. You seem to be more "positive" for APS at the moment. (You should check the Hughes forum here to learn more about that.)
Your best bet with those rashes may be to see a dermatologist, who can take biopsies of your rashes. That can sometimes "prove" lupus, when bloods and symptoms don't.
Unfortunately, you will probably need to keeping pushing for treatment and for a diagnosis, but many of us here are very familiar with that.
I hope you get to the right doctors and on a treatment that helps you. Also, if you are feeling totally miserable you can ask your GP about prednisone for awhile. You have enough markers so that a GP might be comfortable giving you a course of prednisone, which is likely to make you feel much better, but is something you want to stay away from as much as you can since it can mess you up long term. But short term or in low doses, it is pretty safe.
Good luck to you. The immune system is complex, and different doctors have different ideas. To me the diagnosis isn't as important as finding the treatment that helps, but that also takes patience.
Hi anny,you seems like had lupus for along time.i need your opinion.my daughter 9years old doagnosis anti ds dna and ana test positive.lupus anticoagulant.anti ro positive too.but my daughter just have nose bleeding symptom because her platelet low.now.the rheumatology give her presnisolone 10mg and plaquenil 200mg everyday.i want to ask is the medicine need to take for her life time forever?may i know how long you have been lupus?and the medicine you take untill now?thankyou
In most cases hydroxychloroquine (plaquenil) is often prescribed for life because it is effective in combatting many symptoms of lupus and is also generally well tolerated with few side-effects. Prednisolone is often used to help bring flares under control and tends to be tapered off whenever possible because it can have a lot of side-effects, especially when taken in high doses over a long time.
If you need more information about lupus, we have a free pack which you can request or download at lupusuk.org.uk/contact-us/
I got sick when I was in my mid-twenties. It took me 7 years to find a rheumy to put me on plaquenil. At the time, the rheumatologist was OK with my trying to stop the drug. After two or three years, after I was feeling very much better, I stopped for a few months, but went back to having problems. The rheumy suggested I go back on it. After another 7 years or so, I stopped it again and I stayed about the same as I had been. In other words, I was in a pretty close to remission. It wasn't until 2012 that I got very ill again. So I am back on plaquenil. Lupus treatment has changed a lot since I was first put on plaquenil.
They probably won't keep your daughter on steroids for very long, but it takes time for plaquenil to work. And even when it seems like it is working, your daughter may still keep feeling better for months later till it reaches its full effect. But I don't know if they take children off plaquenil these days or not. It may depend on how severe her symptoms were or are.
I'm really sorry that your daughter has this. It always breaks my heart to think of kids suffering from illness.
This site is great; I am awaiting the results of blood tests for lupus, while I also undergo investigations and specific treatment for a number of other illnesses, including, gynaecological disorders, oesophageal reflux disease-related hernia/gall bladder issues and I am al over the place with the management of my "unprovoked" bilateral pulmonary embolism, last August. It is nice to know that moving forward in the investigations for lupus, there are places that one can turn to, for more information and support.
Thanks to all posters/administrators for this great information.
It may be worth going to your GP and showing them the rashes that you have been experiencing. They may feel that this is sufficient evidence of lupus activity and wish to treat you.
If you need more information about lupus we have a free pack that you can request or download at lupusuk.org.uk/contact-us/
Sorry, Stacieann - I posted the reply to vijj, but it was meant to you, as follows:
Hi vijij,
I wish you the best of luck, going forward.
This site is great; I am awaiting the results of blood tests for lupus, while I also undergo investigations and specific treatment for a number of other illnesses, including, gynaecological disorders, oesophageal reflux disease-related hernia/gall bladder issues and I am al over the place with the management of my "unprovoked" bilateral pulmonary embolism, last August. It is nice to know that moving forward in the investigations for lupus, there are places that one can turn to, for more information and support.
Thanks to all posters/administrators for this great information.
The GP has referred me back to my rheumatologist based on my symptoms. The rashes on my arm are so strange, they almost look like mosquito bites, but they're not itchy, and the seem to just appear in random spots, then they 'calm down' until they're flat. I've been unwell today, completely energy zapped, lots of muscle aches, and I noticed that the 'rashes' have flared up again. And my glands seem to swell at the same time. Hopefully I'll get some answers off the rheumatologist soon.
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I'm at the GP this Thursday so I will mention the rashes then and see what they have to say. 
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