Hello everyone

[Martha-dorothy]

I was diagnosed with fibromyalgia in 2015 and a probable lupus diagnosis at the same time and was prescribed hydroxychloroquine I've been on this medication since in 2017 I suffered a tia but thankfully fully recovered. My rheumatologist says he can't give me a full sle diagnosis as I don't have all of the symptoms so I am unsure what exactly is wrong with me .

In August 2023 I started with a chest infection I was prescribed antibiotics but developed a severe sore throat and an enlarged lymph node in the right side of my neck i was referred for an ultrasound which came back inconclusive and the sore throat continued after another 5 lots of antibiotics by November my submandiblar glands were also swollen I was sent to ENT they looked on my throat with a camera and the conclusion was swollen lymph nodes in my neck and throat and suggested I see my rheumatologist as they thought I was having a lupus flare, I saw him 3 weeks ago he took bloods and referred me for a contrast mri which I have this Sunday,however I am still suffering with a severe sore throat and my gp says there's nothing she can do I need to wait it out til the flare calms down

Has anyone experienced this and a flare to last for over 6 months??

[Hoofprints]

So sorry you are having a tough time.Did they establish/hypothesise why you had the TIA? Have you been tested for anti-phospholipid syndrome (APS)? It may be worth having this blood test (s) done by your rheumatologist as I believe the syndrome can often run alongside lupus type illness and present with similar symptoms as well as blood clots.

I was diagnosed for years with fibromyalgia until a rheumatologist ran a blood test for anti -C1q antibodies. I was strongly positive. My complement C3 and C4 was also low and alongside the rashes , this led to my diagnosis of urtical vasculitis syndrome. I am treated at present with Hydroxychloroqine.

For years, sore throats and swollen glands were common for me and always assumed to be caused by a persistent viral infection. I have since learned that autoimmune disease like lupus, sjorgrens syndrome and vasculitis also present with these symptoms as part of the picture. It's possible that this could be part of your problem, but maybe you could see an immunologist and/infectious disease specialist to rule out any other underlying infections cause.

You say your rheumatologist can't diagnose you with full SLE because of your bloods, but you don't say what your blood tests did show. I presume some elements were abnormal?

I would press your rheumatologist to test you for APS and sjorgren syndrome. Perhaps your GP could also consider a second opinion from another rheumatologist.

Antibiotics won't help if the cause is autoimmune or viral, so unless there's evidence of a bacterial infection, maybe spare you gut biome the problems taking more antibiotics can potentially cause by imbalancing it.

Sorry I can't be more help but hopefully there will be others along soon who may have useful suggestions that help.

Good luck 🍀

[KayHimm]

Martha-Dorothy -

You are really having a tough time. That’s a long time to be sick.

These autoimmune diseases are described in many different ways in the attempt to be most accurate. We poor patients are usually clueless. I will try to help. Sometimes if someone looks a lot like lupus but they aren’t ready to use the label, they say “probable lupus.” There is also “possible lupus” and “definite lupus.” To us it is crazy, but they talk the same language. I would think anyone with probable lupus is treated as any person with inflammatory disease but with awareness that lupus complications are more likely. As an example, if your TIA was caused by your autoimmune disease, that would be a more lupus symptom. It’s isn’t that it couldn’t happen in other autoimmune diseases but certain neurological things are seen as “lupus-like”.

I think from what the ENT said that he knew you had probable lupus when he saw you. Infections can be more common in patients with lupus. It can also cause glands to swell just like when you have in infection. Infections can also cause a lupus flare. So poor you has been battling some or all of this. The infection hasn’t cleared, ENT is seeing something that makes him think there is lupus activity, and they are trying to figure it all out.

Your GP knows he cannot be of help. The rheumatologist and ENT will draw conclusions after they see all the labs and imaging.

I am sorry you are going through this. These things can get very complicated. But they need to know what is going on with your glands and throat.

Best of luck.

Kay

[BeeManShrop]

Hello MD My wife had similar in 2020. She was very ill and unable to eat anything (even her tablets) without bringing them back, She was 6 weeks in a gastro ward and the consultants (6-7 in all) were completely baffled. After 6 weeks she told me on the phone (no visitors - covid) that they were talking about discharging her. I then wrote to the consultant as she had been fed via a tube for the whole of her 6 weeks stay. I was invited in for a discussion. I was told that they had no idea what the problem was so she was to be discharged with "no diagnosis" in addition I was told that she was too ill to be admitted for intensive care, we must complete a DNR form (Do not resuscitate) and also another form (Respect) to say she was not to be readmitted to hospital. Basically, they had given up and were sending h er home to die. She could eat nothing other than Complan for the next 12 months. Despite this she is now 4 years later, quite well relatively so, but fatigue is still lingering on.

They had found that she had three different infections stomach, pleurisy and also candidiasis in the oesophagus i.e. thrush all the way down the oesophagus. Which is caused by a fungal infection and needed treatment with a special anti-fungal medication Fluconazole. This did cause a very sore throat. She was eventually diagnosed with SLE lupus. We now think that the immunosuppressing drug she was taking for her RA had wiped out her immune system leaving her open to infection and she was having a lupus flare right through the time she was in hospital.

Hoping this helps -- just a little.

[posthinking01]

Hi there Martha- Dorothy what a lovely name - has anyone checked your thyroid levels as I had undiagnosed problems with my thyroid gland that weren't helping the situation at all. A lot of symptoms disappeared when I went on thyroid medication.

[Martha-dorothy]

Hi everyone and thankyou for responding I am currently in hospital I have been diagnosed with copd and I have a small amount of fluid round my heart contrast mri and ct show enlarged lymph nodes in throat neck and lungs ,however consultant says there is nothing that looks sinister tomorrow I am having biopsies so fingers crossed I may have answers very soon Much love to you all ❤️