My Lupus Diagnosis and Current Health Struggles

[Abarna]

Hey all!!!!! I was diagnosed with lupus in November 2023 in Sri Lanka after consulting three rheumatology specialists. They confirmed the diagnosis, and I was prescribed medications, including methylprednisolone, methotrexate, and hydroxychloroquine.

Recently, I moved to the UK and started consulting a rheumatologist here. They conducted several blood tests, and the results showed:

ANA: Positive, Titre 1:80 (Speckled pattern)

IgM: 2.81 g/L (High)

RA Factor: Normal

CCP: Negative

IgA & IgG: Normal

Protein in urine: Trace

Vitamin D (25-hydroxyvitamin D): 43 nmol/L

Complement C3: 1.76 g/L

Complement C4: 0.20 g/L

CRP (C-reactive protein): 2 mg/L

Ferritin: 43 µg/L

Folate: >20.0 µg/L (Normal)

ALT (Alanine Aminotransferase): 33 IU/L

Albumin: 49 g/L (Normal range: 35 - 50 g/L)

Cholesterol: 4.3 mmol/L (Normal)

Urate: 336 µmol/L (Normal range: 140-360 µmol/L)

Vitamin B12: 1,264 ng/L (High, Normal range: >178 ng/L)

Blood Viscosity: 1.80 mPa.s (Slightly elevated, Normal range: 1.48 - 1.72 mPa.s)

Joint Assessment:

Tender joints: 50/68

Swollen joints: 0/66

DAS-28 score: X-rays of hands and feet showed no erosion.

Despite my symptoms—severe joint pain, fatigue, butterfly rash, mouth ulcers, stomach pain, chest tenderness, heavy breathing, eye pain, and lower abdominal pain—the doctor here is uncertain about my lupus diagnosis. They suggested that I may or may not have lupus and advised me to stop all medications for four months to monitor my symptoms.

Now, without medication, my pain and fatigue have worsened significantly. I feel completely drained—physically, mentally, and emotionally. Simple daily tasks have become unbearable.

I don’t understand why the doctors here are handling my case this way. If I do have lupus, stopping my treatment could lead to serious complications. But if I don’t, then what exactly is wrong with me? I feel lost and helpless.

I would really appreciate any guidance or advice on what to do next. How can I advocate for myself in this situation? What steps should I take to ensure I get the right diagnosis and treatment?

[lupus-support1 Administrator]

Welcome!

First, I’m not a doctor and can’t give medical advice. It’s important to remember that some rheumatologists have never treated a lupus patient, probably because unless the patient is female, a positive ANA & malar rash, they simply don’t know! A malar rash is not necessarily seen in patients with SLE!

My advice is to find a rheumatologist who is a specialist in SLE. Dr David D’Cruz is at St Thomas Hospital, London and can be seen privately at the London Bridge Hospital’s Lupus Centre.

I don’t know your circumstances or whether you are covered by the NHS or privately. Blood tests aren’t definitive as they can and do change over time. I have seen doctors claim the patient “doesn’t have lupus before the blood tests aren’t definitive “normal!”

I was diagnosed with SLE by one

Of the world’s experts: Dr Graham RV Hughes. Dr D’Cruz was taught by Dr Hughes. Blood tests can and do change.

IMHO, you ought to see a specialist in SLE. Not every rheumatologist is a specialist in SLE.

With good wishes,

Ros

[Abarna in reply to lupus-support1]

Thank you so much for sharing this information and your experience. I truly appreciate your advice. I am currently in Exeter, UK, and I will look into finding a lupus specialist here. If needed, I will also consider specialists in London.

Wishing you good health!

[Poshcards in reply to Abarna]

The RNHRD is based in the RUH in Bath, it is a Centre of Excellence for Lupus. I have been going there for 33 years x