Hi I have been suffering from joint pain and muscle pain since christmas last year, it comes and goes but each time it comes back it gets worse, I have lost over a stone not on purpose and have had unexplained blood clots in leg and lungs in 2012. I have had tests done for Lupus and the result letter says I have elavated double stranded DNA,and should see a rheumatoligist, I can'tget in until Feb and I'm worried and unable to sleep at night, can anyone help?

12 Replies

  • Hi Rocky3,

    I'm sorry to hear that you have been struggling with these symptoms and you are now facing a delay in seeing a rheumatologist. Unfortunately a wait like this is quite common, although I can appreciate the anxiety this causes.

    Have you received an appointment letter yet? You may be able to get an earlier appointment by regularly calling the secretary and checking if there have been any cancellations.

    In the meantime, do you think your GP might be willing to prescribe a short course of steroids to help reduce your inflammation and make your symptoms more manageable until you are seen by the consultant?

    You may also want to ask your GP to test you for Antiphospholipid Syndrome (sticky blood). This often occurs as an overlap condition with lupus and can be a cause of blood clots. If you test positive for this then they may be able to start some treatment and reduce the risk of potential further clots or other symptoms.

    If you require more information about lupus you can request or download our free info pack at lupusuk.org.uk/contact-us/

  • Thanks Paul I have the letter, I will keep asking them for any cancellations and I have a appointment to see the doctor next wednesday so I will ask him for the steriods then, thank you for your help, do you think my symptoms/results are a strong indication of Lupus or could it be something else?

  • I'm not really able to say whether it might be lupus or not as we are not medically trained. What I can say is that the anti-DNA antibody test is highly specific for lupus and they are rarely found in any other condition. You can read more about this in our Factsheet, 'LUPUS: The Symptoms and Diagnosis' which you can download at lupusuk.org.uk/publications/

  • sometimes its a good idea to have a relaxant and sleeping pill on hand with the steroids, don't be afraid to ask your GP for these additions and use them when needed. they help you cope with the steroids easier.

  • well your doctor should be testing for blood clots immediately and attending to those. if not, you can always take an aspirin a day, this isn't bad for lupus inflammation either, not a long term plan, but something in the meanwhile. stop worrying. lupus LOVES people who worry, it seems to THRIVE on it. so don't give it the pleasure. if its inflammation from the lupus, rest, relax, organize your life so you can get rid of some unnecessary stress. when you see the rheumatologist you'll be taking tests and talking about long term drugs. be sure to tell her about the blood clots as im sure you would. you may as well get your life organized for lupus now because it will help in the future. you will have to unload as much stress as you can. lots of people live beyond their stress limits, find those limits and pay attention to them. lots of lupus work is stress, allergy, diet, exercise, and infection management. so while waiting for your rheumatologist, start on those things. they are more than half the battle anyway.

  • Thankyou for your advice everyone, its really good to know these things and it is helping me, I feel much better and more prepared for when I see the doctor and rheumatolgist

  • Just a quick question, yesterday I noticed that my eyes felt a bit gritty and there seems to be tiny black dots, I thought I'd see how they were today but there no better, I work in a office and when I look at the computer it seems a tiny bit blurred, any advice should I be concerned?

  • Get your eyes checked don't risk your eyesight.

  • I too suffer with gritty eyes & black floaty dots. I've been diagnosed with 'dry eyes' which I treat with an eye gel prescribed by my doctor that I use up to 4 times daily. It's worth mentioning your symptoms to your doctor tho & see what they say & recommend.


    I have SLE Lupus

  • It's just another symptom. You can buy dry eye drops from a chemist in advance of your appointment. However, make sure you tell the doctor and they can give you some viscotears gel. Good luckx

  • Okay thank you

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