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)
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?
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Abarna
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What a ghastly situation you’re in. However, it is one that is familiar. With a new patient doctors will often remove all previous medications and ignore any previous diagnosis in order to make up their own minds as to what is wrong.
If you haven’t already, make contact with your Rheumatology department and tell them how quickly these symptoms started, how strongly, and the effect they’re having on your daily life. They may hopefully shorten that four month period.
Is your GP on board with all this? Sometimes they will advocate on your behalf. Try and get a face-to-face appointment so that he/she can see exactly the effect this is having you.
PS hope you’re managing the climate better, spring here bringing warmer days
This actually sounds very irresponsible of doctors, particularly when symptoms are severe. Don't actually believe what you saying as there are such risks to patients., particularly if their condition is severe.
A more pragmatic and safer approach would be to slightly reduce dosages. Which probably a good rheumatologist might do if someone was not still flaring.
To completely take a patient off all meds, as standard practice is like using them as guinea pigs in an experiment
Symptoms can be aweful and irreversible organ damage can result.
You mention trying to negotiate something different with the department - so often though from what people here report of NHS rheumatology provision, there is often little room for dialogue and any sort of attempt to get shared decision would be stressful for the patient. For many the condition is made worse by stress so why would a consultant, in their right mind, do this.
Do we all need to worry about this happening each time a doctor leaves a department or retires, or if we move or if the hospital team changes. Surely not all CTD rheumatologusts are like this?
I just don't believe this is standard practice.
Dr Donald Thomas says it is important to get copies of previous test results and diagnoses
Are you suggesting this gets ignored? Do you work in rheumatology yourself?
How did you come by proof of this?
Maybe the condition you relate to is less severe than the symptoms I suffer. Then removing meds might not be so catastrophic .
Also more and more GPs are limiting things they take responsibility for. My new GP yesterday indicated he could not get involved in anything CTD related as he had not the expertise.
Probably our patterns of NHS health provision are different. I had to really battle to get any help at all in the first place. Every excuse under the sun, probably aimed at decreasing caseload, without a care in the world for patient.
Now I have a great rheumy and I hope they will help me with a smooth transfer, if one is ever needed. I probably would rely on them to recommend who would be best to see, if so.
Like you, “I don’t believe removing all medications is standard practice” but it does happen as Abarna can testify to.
It is familiar to me because it happened to a family member (though not lupus-related) with the doctor reasoning that they wanted to review the diagnosis by monitoring symptoms then prescribing accordingly. Like you, I find this an irresponsible way of going about things. These won’t be two isolated cases.
Getting GP support worked for me, hence my suggestion. The GP doesn’t need to have a rheumatology qualification to see that their patient is in dire need of help, and request she be seen soonest.
No, I have no written evidence or any medical qualifications only sympathy and hopefully reasonable suggestions.
Thanks for explaining. Your reply helped. After local NHS Rheumatology failed me, my then GP knowing I was in dire need said he would refer me anywhere in the UK . He could see I needed help so badly.So relate to this.
Then this totally brilliant GP retired. Now have new GP and get the feeling they don't understand or are in a position where they need to play pass the parcel if work can be shifted off them. They only work two days a week. One day as duty doctor, so can't see patients easily as triaging. I did an eSubmissuon on the day they were not duty doctor. Result = Email back which did not address anything, in relation to future NHS care when I get older and just stressed their position - different to previous GP. Never saw this coming, now need to find a way of getting bloods done, and finding where to go when need help locally.
Going to do post on 111 because heard its way of working locally here has changed and they are organising face to face GP appts at other surgeries.
I had lots of symptoms, but only ANA was positive.I went private after local NHS said I did not have Lupus as I walked in the room. They only had my blood results at this point. They were not interested basically.
I contacted the London Lupus Centre and asked for names of consultants who might see me. I found them great. (I never took out health insurance though, as here assumped NHS would always be there. Too late now as could not get cover) Over last three years symptoms have been controlled with hydroxychloroquine, mepacrine and short course of steroid twice. My diagnosis is written as 'UCTD positive ANA, negative ds-DNA'
I think the change is due to the new 2019 EULAR/ ACR SLE Criteria being adopted by some to diagnose - it was only intended for research.
Maybe in SriLanka they don't use this European / American system..
It is hard though. When we tell people we have an Undifferentiated Connective Tissue Disorder they just switch off as it means nothing to the layman.
Treatment is the same though. I think it is a matter of finding the right hospital and right doctor.
Given my diagnosis is UCTD I have searched rheumatology department websites to see if conditions treated include UCTD.
Still trying to find a NHS hospital locally that might take over my care when I get older and can't travel, and where they might cover lupus like UCTD in A&E if I went there.
My ESR does not gets raised much so again this means timely help is often denied by GP and local NHS.
Thank you. I can relate to your experience. My diagnosis journey was also challenging, and getting proper care hasn’t been easy. In Sri Lanka, lupus was diagnosed based on symptoms and positive ANA, but navigating the NHS has been tough. Like you said, UCTD and lupus overlap, yet many don’t understand UCTD. Finding the right doctor is key. I’m also looking for an NHS hospital for long-term care—have you found any good options?
That makes sense. I’m in Exeter, so I’m still trying to find a hospital that understands lupus-like UCTD and offers good long-term care. Any recommendations?
Your GP can refer you to RUH Bath which is a lupus centre of excellence and is NHS . But .. they also took me off of 1 of my meds when I was seen and I flared really quickly .. It can be hit or miss who you see as lots of consultants there but I am seen every 6 months whereas I haven’t been seen in my local hospital down the road for 2 years as so short staffed.
I am so sorry you feel so awful and I do hope you get some help 😞 xx
Ps my previous GP was absolutely dreadful so I changed . He was happy to refer but he admitted he knew nothing about connective tissue disease
Thank you for the advice! I’ll definitely look into RUH Bath as a potential option. It’s good to know about the nurse helpline, though I’m sorry to hear about your experience with medications there. It can be frustrating when hospitals are short-staffed—I'm in a similar situation with long wait times. I appreciate your support, and I’m doing my best to manage. Thanks again for sharing your experience!
No problem at all . I did go privately to consultant in Exeter and he prescribed medication but Gp wouldn’t honour it as needed regular blood tests . Please be careful of going privately unless you are insured as the tests cost thousands and often you don’t even end up on medication xx
Sorry to bombard you but forgot to say it could well be the drs here in UK are thinking something else is going on . I know that’s not helpful when you feel so terribly ill . They never say what they think might be wrong in case it’s nothing x
Hello and sorry that you are in this situation. I have heard time and time again “ It’s not my area of expertise” from my consultant colleagues or (former )nurse peers. Like Tiggwoos said it really depends where you are in relation to a good centre in UK.
Thank you for your understanding. It’s frustrating when people don’t have the right expertise or are unable to provide the support needed. I agree, being close to a good centre really makes a difference. I’ll keep looking into options.
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