Anticipating to be diagnosed

[sflynn84]

Hello, I am not from the UK but found this site very informative. I am 9 months postpartum and started to feel some tenderness in my knuckles and toes. My doctor ran the ANA which came back at 1:160 speckled. My rheumatologist ran additional tests and my anti dsdna came back at 1:10 which according to the range is just positive. My C4 complements were on the low end as well. What I am having a difficult time grasping is I don't feel sick, my joints don't really hurt. How can I have lupus? I am struggling if I should go on the plaquneil or try to monitor it. Has anyone else had a similar experience? I have been extremely worried over this.

[whisperit]

Hello,

Can you say a bit more about your situation? Has your rheumatologist made a specific diagnosis? Has s/he made any recommendations about treatment?

The whole language of auto-immune disease and immune suppressants etc can be quite alarming, especially at first, but is there anything in particular that you are worrying about? X

[sflynn84 in reply to whisperit]

Hello, I received my lab results before my appointment and having a positive anti dsdna I am presuming it's lupus. I have two small children and I am worried about what will happen to my quality of life.

[Puska in reply to sflynn84]

If you do receive SLE diagnosis then your Drs are on to it very early if you have no significant symptoms as yet. Plaquenil seems to be tolerated well by most and does help many of us. My niece is 30, has lupus, had 2 children after diagnosis and just completed her PhD and works full time. Yes she has issues but she manages them. Her ANA was 1:1280. Don't panic just yet!

[whisperit]

Thanks for the extra info. It seems like it is very early days for you to have already decided that you probably have lupus, let alone the drugs you will be prescribed, any problems you might or might not develop and so on.

Until your rheumatologist gives a considered opinion, make a list of the things you need to ask him/her when the time comes. Try to leave the anxiety on that list and enjoy life with your little ones.

Best wishes x

[sflynn84]

Thank you both for your replies. Honestly Lupus was never on my radar. You worry about your children, cancer.... never Lupus. I think the unknown is what is so frightening. I want to live to see grandchildren.

[nanleighh]

Hi slflynn, I am from the US and have found this to be the best of all the sites for information and support for lupus. Do you have an appointment with the rheumatologist for diagnosis? They diagnosis of lupus is made not just on labs but also on symptoms that you're having. There is criteria that the rheumatologist follow. The best websites to go are the mayo clinic, Johns Hopkins, or the Cleveland clinic, which all have very good information on Lupus diagnosis. Also this site lupus UK also has excellent downloadable brochures that explain different things very well. For me I had symptoms for at least 10 years prior to any positive labs. Every time they tell me that there was no diagnosis other than low vitamin D, I believed them. It was almost a relief when I was finally diagnosed with lupus, because you begin to think you're crazy when you have all the symptoms and they keep telling you nothing is wrong. But it is also very scary, I am a nurse for 35 years, and it still took me quite a while to wrap my head around my lupus diagnosis. I would say keep a list of all the symptoms that you have, take pictures of any rashes that pop up and take them with you to your appointment, because many times by the time we get an appointment our symptoms have changed. I wish you the best of luck in your journey, there are so many treatments out there now. Most people can expect a normal lifespan if they take good care of themselves and keep up with their treatment. The most important advice I could give you is rest when you need to. Don't be afraid to ask for help if you need it. Take care, Nan

[sflynn84]

Hi Nan, I actually have an appointment next week with my rheumatologist and I am very nervous. Unfortunately many of these labs send the results directly to patients so we see them before actually meeting with our doctors. The only symptom I have had is joint tenderness and stiffness that I noticed at night when I got up to feed my baby, which has since gone away. It is so difficult to imagine leading a normal life. I went from being the happiest I have ever been after the birth of my second child to facing a chronic illness.