Tests

[Larny]

Hi,

Last year I started feeling poorly, red rash, joint pain and feeling extremely tired. At first I thought it was just a reaction to something until I started to feel very poorly, Like having the flu. I went to see several doctors who were not sure what was wrong so they sent me to a rheumatologist, who then started testing for Lupus.

Its been over a year of tests, constant pain which can sometimes last 2-3 weeks. There has been strange things like my lips going numb, hair falling out and my nails peeling. But no diagnosis as to what is wrong with me. I have had several positive ANA results but weak according to the rheumy. And after this last blood test they have given me now yearly checkups.

I was wondering is anyone knows anything more I can do ? Ibuprofen can only do so much (pretty much nothing). I am at University and I work which is something I have struggled with over the year. Work doesn't seem to understand how much pain I am in some days and uses the phrase " You are young" all the time.

Sorry if this seems to be a bit of a rant , just not sure what else I can do.

Thanks

[Paul_Howard Partner LUPUS UK]

Hi Larny ,

So you are seeing a rheumatologist and you have had several (weakly) positive ANA results? Do you know if they have done any other autoimmune blood tests like anti-dsDNA antibody or ENA tests?

Is there a reason that you consultant is reluctant to make a diagnosis and perhaps start you on some treatment to help alleviate your symptoms?

[Larny in reply to Paul_Howard]

I had my last appointment a few weeks ago and just received a letter stating it will now be yearly checkups. Each blood test I have has positive ANA but weak. Not sure on other test, they never explain fully. On last test C3 was normal, but C4 was raised. (not sure what these are?)

They have not given me any indication of treating my symptoms.

[Paul_Howard Partner LUPUS UK in reply to Larny]

C3 and C4 are complements. This is a term used for a group of proteins in the blood which are involved in the immune process. In active lupus the levels of complement (C3 and C4) are low and these often provide a clue to the degree of disease activity.

If you would like more information about the tests involved in diagnosing and monitoring lupus, have a look at our factsheet here - lupusuk.org.uk/wp-content/u...

If you are unsatisfied with your current diagnosis and treatment plan, it may be best to go back to your GP and request a referral to a different consultant for a second opinion.

[Larny]

thank you