Back in January 2022, I saw a rheumatologist and had tonnes of tests done and she discussed lupus. However , the GP says this is not one my list of ailments (just inflammatory arthritis and some others). I saw the rheumatology team today and asked for my diagnoses and the person I saw said a load of waffle about certain factors pointing to lupus and the treatments all being the same. In other words, no formal diagnosis.
Anyone else got/had this?
Thanks
Sarah
Sometimes people are diagnosed with Undifferentiated or Undefined Connective Tissue Disorder UCTD.
Same treatment often
Yes I've been under investigation myself for 3 years now and only found out the other week that they believe I have a connective tissue disease along the lines of lupus but can not diagnose it until it shows up in bloods which can take years. Thankfully I have a good rheumatologist who is treating me as if I have lupus with hydroxychloroquine and steroids but it has taken me 3 years and a lot of scans, nuclear bone scans, liver biopsy, lip biopsy and numerous other things to rule out majority of other causes. I would say just keep on, you know your body and if something isn't right you need to keep letting them know. I really hope you get more answers soon 💕
Thank you. I just felt so confused after the appointment!
I can totally relate, I feel the same as its not a diagnosis as such but I feel happy with the way my rheumatologist has dealt with me and the plan for now. Have they offered a plan of treatment or any options for you currently? If so hopefully this will help your symptoms 🤞🏻 if not perhaps bring it up with them? Especially if you are struggling with symptoms. 💕
I have been on methotrexate since May 2022. And see the team every 4 to 6 months. I was told last time that no matter what the diagnosis, the treatment would be the same so not to worry about the actual diagnosis x
“…I saw the rheumatology team today and asked for my diagnoses and the person I saw said a load of waffle about certain factors pointing to lupus and the treatments all being the same.…”??🧐
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Thanks for posting.
Sorry to hear about your bad/poor experiences with this rheumatology team. They sound an ignorant, bluffing and patronising bunch!
Treatments, tests and biopsies are not the same!
Lupus confounds most doctors.
Lupus has myriad manifestations from grumblings, unpleasant symptoms in any part of your body and moreover can affect any cell, tissue, organ or organ systems…
Hence various medical specialists have to get involved or at least you should be referred to one rather than be stuck with this generalist rheumatology department?
Take myself as a common? example:
Some 10 years ago I had alarming red rashes on my hands which spread all over my back. GP thought it was an allergy connected with hay fever! I repeatedly went to see him and he reluctantly referred me to NHS dermatology nearly a year later.
Dermatology prescribed steroid creams, lotions etc and took a skin punch biopsy (above my hip). Subsequently SCLE (subcutaneous lupus erythematosus) was diagnosed. HCQ tablets were also prescribed. As you can imagine it’s impossible to apply steroid creams on one’s back hence the HCQ helped with the systemic massive inflammation.
Months later I had SLE followed by severe kidney dysfunction: classic signs- frothy urine, constant fatigue etc. GP referred me to a nephrologist who happened to specialise in lupus nephritis (lucky?) who put me on a massive but reducing dose of Prednisolone +MMF 3000mg /day after a thorough kidney biopsy investigation. Helped tremendously!
Around 5 years ago primary hypothyroidism kicked in and I’m now permanently on 100mcg/day replacement thyroxine therapy (Levothyroxine).
IRONICALLY I’ve never been formally under the care of any rheumatologist! Nor would I feel confident in this team looking after you.
Hopefully dermatology, nephrology and endocrinology can still look after me properly but who knows what’s next with lupus?
I’ve slowly learned to accept the numerous (sub) diagnoses that lupus presents plus the sad morphing of skin issues to start with into hugely serious internal lupus manifestations and organ involvement all over.
All the best and good luck!
These illnesses can be very hard to diagnose. It is extremely hard on patients. In your case it sounds like you have some things pointing to lupus and some things maybe pointing to other related conditions. Try not focus too much on the diagnosis. They seem to know you have autoimmune disease and treating appropriately. They will be alert to any new signs that put you in a category. Sometimes it takes time for people to show their true colors. Other times we stay “little bit of this, little bit of that.”
You could ask what blood tests point to lupus and what is leaning against.
A good article written for specialists by two rheumatologists is “undifferentiated connective tissue” by Mitnick and Askenase. It helps to see what rheumatologists use when diagnosing a people who are not fitting neatly into a box. We are twenty-five percent of a rheumatology practice.
You are far from alone. They may have to see how you evolve. You will be reassessed regularly, I know.
Best of luck,
Kay
Think I am in this category, I am convinced I have Lupus. I started getting ill after the birth of my son in 2018, extremely severe fatigue, brain fog, rash on my nose and cheeks after sunbathing, joint pains and swelling to the point it affected my mobility, stomach pains, severe hair loss.
I got diagnosed with an under active thyroid in 2019, my thyroid levels stabilised with Levothyroxine but my symptoms got worse.
Then last year I got diagnosed with Coeliac disease, very high number on the blood antibodies but negative biopsy, gastro still diagnosed as coeliacs due to symptoms and high blood reading.
Then the GP got concerned because my blood results kept showing high readings for liver enzymes even though I don’t drink, they sent me for a liver scan, my livers not showing signs of damage but when they checked my blood for antibodies for autoimmune hepatitis it was positive but the gastro team are not concerned by it cos my liver is showing no signs of damage.
In June my eyes started to become inflamed, GP passed it off originally as hayfever treated with hayfever drops and antibiotics just in case if it was an infection but symptoms didn’t improve, I went to my optician who said it’s severe dry eyes, gave me 3 sets of drops to take but still didn’t improve. 2 weeks ago it got worse, the whites of my eyes were completely red, severe pain and lost my vision in one eye. Thankfully I saw the same gp who originally said hayfever and she got me straight in to see the eye clinic at the hospital, they’ve said it’s my immune system thats attacking my eyes and put me on steroid eye drops and dilation drops.
I saw a dermatologist about my hair loss in December she said I have a small patch of alopecia and signs of hair thinning but put it down to a slow regrowth cycle, I forgot what the name of the diagnosis she used.
I’m currently under the care of the eye clinic, gastroenterology, rheumatology and neurology. I’m having tests with neurology tomorrow because they said I have inflammation around my elbows. I then have an appointment with my rheumatologist in October and gastro in December. The rheumatologist said it’s not lupus cos I tested negative for ANA but I just find it so strange that I have all the symptoms and my immune system is firing off all these different antibodies. Apologies for sounding off, I think I’m just frustrated that the dots aren’t connecting for all these issues I’m having and it’s causing me anxiety worrying about what my immune system is going to do next
Yes, it is scary when our immune systems are going wonky on us. It does sound like the dots are not easy to connect. But try to be patient. This is very common and doctors who treat autoimmune disease know they are unpredictable. They will treat anything that needs treatment whether they can put a neat label on you or not.
Keep records and photos. With all of your autoimmune issues, you will be taken very seriously.
Keep us posted.
K
Thank you for your response, it has definitely put my mind more at ease. Thanks again
Yes-
It allows them to deny you MORE ADVANCED TREATMENTS - since INSURANCE only Covers certain Meds (like Benlysta) if you have a true Diagnosis.
Yes - most treatments are the Same -
But most find that ARTHRITIS MEDICINE does not make a dent in their LUPUS JOINT PAIN.
Only Hydroxychloroquine & other more aggressive treatments actually help with “Lupus Joint pain”, fatigue, mouth sores, etc
Good Article on how to TRACK SYMPTOMS (being PROACTIVE & LEARNING how to recognize SYMPTOMS & what STRESS FACTORS, Sun, Etc) to SHOW more CONCRETE EVIDENCE of when, where, DEGREE of PAIN level, etc helps you & Drs understand your “Lupus” - it’s different for everyone.
mylupusteam.com/resources/h...
Symptoms throughout Body to be aware of with Lupus:
Thank you. I'll start tracking.
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