1. Community
  2. Bones, joints and muscles
  3. Lupus

I'm still convinced I have Lupus

Posted , 6 users are following.

Jan999
Jan999

I have been on this forum before because I was convinced I had lupus. I had a lot of symptoms such as lethargy, joint pain, hair loss, rash etc but this was disproved by different consultants. I do have osteoarthritis in some joints so I thought perhaps I was wrong. I had a blood test that showed I had a raised anti phospholipid antibody then the next one was within normal limits. However I now have this terrible feeling of overheating. I wake up soaking wet and I have to dry myself down, shower and change the bedclothes every day. The only way to explain it is that I feel as though I'm overheating from inside my body. Not only do I overheat at night but during the day as well sometimes every hour. Is this a symptom of Lupus? I'm now so confused by what I've read and what consultants have told me 

0 likes, 43 replies

43 Replies

Prev
  • jujubeee
    jujubeee Jan999

    Posted

    In US the criteria used to diagnose lupus by the ACR is to have 4/11 of these symptoms:

    Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly

    Discoid rash – a rash that appears as red, raised, disk-shaped patches

    Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse

    Oral ulcers – sores appearing in the mouth

    Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed

    Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)

    Kidney disorder – persistent protein or cellular casts in the urine

    Neurological disorder – seizures or psychosis

    Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)

    Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies

    Abnormal antinuclear antibody (ANA)

     

    • Jan999
      Jan999 jujubeee

      Posted

      Thanks for that jujubeee. I don't have 4/11. I have arthritis and did have a rash on both hands which a dermatologist told me was dermatitis, gave me treatment and as long as I use it the rash doesn't come back. I occasionally get mouth ulcers but they clear with mouthwash. So I have 1/11
    • pam_87693
      pam_87693 jujubeee

      Posted

      Yes quite correct the same as the UK but the off label product you suggested is not used in the UK. There is a reason and actually I found it in a USA site that with Small fibre neuropathy and brain type problems both very similar in SS and MS which is why I took myself off to London to our top neurological hospital to prove this. I still await bloods from Oxford but I am pretty certain as is my Consultant Neurologist that they will not show anything. The difference is if you take the MS drugs mentioned and available for EDS and POTS and Sjögren's and Lupus that product you probably suggested if it started with L and isn't Leflunomide it will,make your Sjögren's and SLE worse! Believe me it's true. 
    • amber_6594
      amber_6594 pam_87693

      Posted

      I would say if you get the rash n effected more by the sun then use high factor sun block as my dermatologist adviced me too and it works my rash has completly gone also im on azerthyerprine at 200 mg and that helps my other symtems including hydroxocloroquine and a small dose of steroids are you on any of these meds
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.