Being treated but not properly diagnosed?

[ButterflyEffect96]

I’m being treated for SLE, Rheumatologists told me they’re 95% sure it’s lupus so started treating me with 10mg of prednisolone during my recent stay in hospital. Also told me that they were happy with me saying I have lupus (as regards to work etc). However, in my discharge it states “suspicions of Lupus” and an “ongoing diagnoses” and my GP said it isn’t still a proper diagnoses. I don’t know if anyone else has been through this but makes me feel really confused being told different things and being on treatment for something that isn’t 100%.

[whisperit]

Hello ButterflyEffect96

It's a confusing state of affairs, isn't it? But I suspect most people on this forum have had a similar experience. Although I don't know your individual situation, my guess would be that your rheumys have determined that you definitely have some sort of lupus-like systemic auto-immune disorder, but there are some features that don't quite fit neatly into that 'official' diagnostic category. They might also want to see how your markers and symptoms change over time to confirm which label best fits. So you might end up with the label "Lupus/SLE", or "Mixed Connective Tissue Disease" or whatever. It's also possible that you won't ever fit neatly into a single diagnostic "box" (on my GP's database, my own diagnosis is "Connective Tissue Disorder [Not Otherwise Specified]"!)

The good news is that these labels make very little difference to what the most effective treatment will be; steroids and various DMARDs are the standard treatment for them all. Hope that helps x

[ButterflyEffect96 in reply to whisperit]

It really is. Yeah they did mention that other diseases can come under these symptoms and findings also. I will have to look into MCTD more. I guess I just have to wait it out and be patient 😅. They also mentioned anti-malarial which I think they may be treating me with next. Did you at any point have enlarged very solid lymph nodes? And if so has treatment gotten rid of them?

Thank you for your response x

[eekt]

Hi BE! whisperit has nailed it, and you'll see from very many posts that diagnosis fluctuates with time.

If your employer becomes sticky, you only have come-back in law if you have a distinct diagnosis, from the time of diagnosis.

SO, if you think it might become an issue, explain to your medics that you work (some are stuck in the Victorian era and don't grasp the concept that women work) and you need something definitive on paper.

There is a guideline that all doctors should use for assessing, diagnosing and treating SLE:

academic.oup.com/rheumatolo...

and there are three grades of disease activity that decide what treatment (Tables 4 to 7), so you could print them off and go back to your GP? xxx

[ButterflyEffect96 in reply to eekt]

Yeah I seem to have issues with HR, my team manager did say that i don’t need to provide evidence for it however I believe otherwise from just the attitude. The doctors suspected lymphoma prior to this which I informed work of, there was miscommunication with the ENT specialist where I was made to believe I had been diagnosed when after several biopsies there was no malignancy in my lymph nodes hence I’m apprehensive with this diagnosis. Due to lupus being unpredictable would that not be enough to back up?

I’m due a follow up again with Rheumatology to see my response to treatment. My blood tests are positive of ANA, anti-smith, SmRNP etc. My lymph node biopsy also showed signs of reactive lymph nodes and the histology represents that of patients with SLE.

Thank you for you’re reply, makes me feel a lot better, I’ll discuss this further with my GP and rheumatologist 😊xx

[KayHimm]

The most significant thing in what you said, as I hear it, is that you were put on steroids. Doctors do not like to use steroids — even in confirmed lupus cases — unless there are serious symptoms. They are also considering Plaquneil, which is used to dampen the immune system and prevent organ damage. Constitutional symptoms, fever and rashes are treated with NSAIDs and topical cortisone. Your doctors seem quite certain you have lupus, but are waiting before making a firm diagnosis. They can easily tell you their reasoning. As an example, the rheumatologist may say, “Your ANA is high but you do not have anti-dna antibodies. You do have inflammation in your lungs and your rash is consistent with lupus.” Your doctors clearly know what they are doing. These systemic autoimmune diseases take time to declare themselves. If the rheumatologist is saying to use the word lupus at work, he feels he can back that up. I bet he would be happy to write a brief summary that would say he is treating you for systemic autoimmune disease, likely lupus. Your employer will likely be concerned and, I hope, help you in any way. I wish you luck. And try to focus on getting better, not the specific label of your illness.

[Dm02]

I can totally relate! My rheumatologist initially said Lupus & began treating me for that, then UCTD, then just suspected CTD.

It is so frustrating given we are struggling with such serious symptoms.

Hope you get more firm answers soon 💛