Does this sound like a lupus flare?

[skylark15]

Hello, Community.

I recognise that my question may seem absurd, on this forum but my diagnosis of lupus, made in 2011 or so, was on the basis of blood tests and a persistent hip joint inflammation. I was prescribed Hydroxychloroqine and Losartan (for my life-long Raynaud's) and carried on with my life. Erythromelalgia has been a much greater trial.

However, I have spent the last several days in bed, feeling more ill than ever in my life to date, so this is something of a "poor me". The symptoms include:

Utter exhaustion, so I struggle to stay awake and have dozed on and off throughout the 24 hours, waking with my heart racing., which I can hear inside my ears. The nights feel interminably long.

Total loss of appetite and managing only sips of water. Nausea and retching (yuck).

Inability to concentrate and what I think must be "brain fog". Even familiar names and places have vanished from my memory.

My skin feels very sensitive and sometimes my legs or my feet tingle or I feel painful 'electric shocks'.

When I stand up, I feel lightheaded and my pulse starts racing again.

I have no energy.

If I could think more clearly, I'm sure that I could remember other symptoms but I expect you get the gist.

We feared Covid despite both of us having had both vaccinations but PCRs came back yesterday, both negative.

Before these things started, I had a urine tract infection; something that happens every so often, a legacy of injury sustained during the birth of my daughters. I completed a course of antibiotics but the UTI persisted, which has never happened to me before., so my GP prescribed a different antibiotics, which worked but oh dear, what an effort, to swallow those.

My question, to all you experienced Lupies, is can an infection trigger a lupus flare? Thank you.

And if one has to spend a few days in bed, what better view could there be from my bedroom window?

[MrsMarigold]

Hello skylark 15. Yes it sounds like your symptoms are lupus related. But it sounds like 2 other things to me. One is, you do not wholly believe you have lupus. And two, Given that and your symptoms a doctor appointment is what you really need. Best

Regards, Titters

[skylark15 in reply to MrsMarigold]

Hi, Titters. Thanks for your prompt response to my question. I wrote a reply but it must have got lost in the ether (or I forgot to press Send), sorry. Anyway you're right, my symptoms did turn out to have been a lupus flare, undoubtedly triggered by an unresponsive UTI.xx

[Tanitani]

You need to be evaluated by a doctor there are too many things goin on. In a case it is a lupus flare ylu need to know what to do in flares that doctor could prescribe. I do not have neurological symptoms like you, so thats pretty concerning.

[skylark15 in reply to Tanitani]

Hi, TanitaniThanks for responding. Re neuro symptoms, do you mean wobbly legs etc? To add to the general 🦓ness, I have muscular dystrophy, which does complicate things 😌. I'm kind of used to general wobbliness. However, I will certainly see if I can contact my rheumy and discuss whether I need additional or increased lupus meds. This episode was a bit of a wake up for me.

Xx

[Tanitani in reply to skylark15]

I meant the tingling and painful electrical shocks you described.

[skylark15 in reply to Tanitani]

Hi, Tanitani. Right, I understand. I think the lupus flare just made all my "usual" symptoms much worse. The EM and the damage it has caused to small, medium & large nerve fibres and tiny blood vessels in my extremities means that I am fairly used to a degree of tingling, painful, shooting stabs of pain; they're just part of my life now. This was massively exacerbated and was almost too much to bear; I was really frightened. I felt as if I was going to die. I know, I know-melodrama from someone who should know better 😧.

But hey, I lived to tell the tale and even though I'm as weak as a kitten, I'm well enough now to be up most of the day.

Answering your questions and those from others has really helped me to put this all together. Thank you. Xx

[Hamptons]

Yes, however there also seem to be concerning symptoms that may need examining. They may be the cause of the flare or exacerbated by it or just the flare as they can be all encompassing.

Lupus does cause kidney issues so the UTI not responding to antibiotics may need further investigation, also the racing heart whilst a familiar friend of Lupus could be something more serious, especially if it is worse when you stand up.

Exhaustion, tiredness, brain fog are all flare symptoms but you do seem to have a few bonus extras so I would talk to your medical team.

[skylark15 in reply to Hamptons]

Hello, Hamptons.Thank you for responding to my question. I'm learning a lot here. I didn't ever mention the sporadic racing heart to anyone, nor did I look it up-d'oh! It has sometimes woken me at night. It all adds up to a meaningful discussion with my rheumy.

Xx

[Hidden]

Read up on Interstitial Cystitis?

[skylark15 in reply to Hidden]

Hmmm, that's an interesting suggestion. Xx

[EOLHPC]

Am V Much agreeing with the replies you’ve got already & am very glad you’ve posted. Will just add that my feeling is possibly your lupus is under-medicated, cause what you’ve described is v like how I felt during the years when I was only on daily hydroxy with my AIDs inadequately medicated ....ie that was:

- before daily long term myco & pred were added several years after my lupus was finally diagnosed

- & also back during the years when my Raynaud’s was only given daily losartan - before I was recently switched to long term daily high dose sildenafil

- & also back before urology & immunology diagnosed me with chronic urinary tract disease (due to many years of complex persistence pattern urinary tract infections having given pockets of bacteria-driven sepsis to establish so firmly that no strength or number of antibiotic courses could clear them out. Once immunology put me on daily long term coamoxiclav several years ago, the urinary tract & pyelonephritis symptoms all damped down hugely). The science related to urinary tract infections in women has recently become MUCH MORE sophisticated...am wondering: could your case need to be taken more seriously inc receiving more enlightened, advanced care 💞💞💞💞

& YES DEFINITELY: every infection I’ve ever had has triggered a lupus flare!

Thanks for posting your beautiful bedroom view of this glorious prairie planting - that’s a VVVVVV HAPPY HEALTHY rudbeckia! ❤️🍀❤️🍀❤️🍀

[EOLHPC in reply to EOLHPC]

& Am V Much Relating to how much your view helps: after weeks of flaring trouble, my GP sent me to A& E recently...to my surprise, was admitted for 6 days of my 🦓ness perplexing the surgical team 🙄...

....this Genista tree outside our surgical ward window HUGELY helped me to cope💞

[skylark15 in reply to EOLHPC]

Hi, Coco. Good, as ever, to have your input. Thanks.

I'm pretty sure that my recurrent UTIs are a direct (and predictable) consequence of my bowel problems (another unfortunate legacy of long ago childbirth) but it's certainly something else to discuss, this time with my lovely (😁) urogynaecologist and my colorectal surgeon. However, from now on, I'll certainly take more notice if a UTI doesn't respond within a day or two to antibiotics. This flare has really shaken me.

And the new garden here is a huge joy. I can understand how that beautiful Genista tree would have helped you during your hospital stay.

Xx

[EOLHPC in reply to skylark15]

Am relieved you’ve got this good gang of medics helping with your ‘mix down there’ 👏👏👏👏 Am very much relating cause several years ago I had to start working with a gang of multidiscipline medics re my abdo/pelvic/lower spine issues.

This is interesting! 👍 legacy of childbirth makes sense! our stuff is always down to a ‘pie chart’ of underlying causes...eg:

1 of the slices in my pie chart relates to anatomical issues: although I’m infertile (due to diethylstilbestrol exposure in utero) my urinary tract infections thrive cause hEDS globally stretchy tissues inside & out make it easier for bacteria to burrow into folds, creases & crannies pretty everywhere....the older I am, the worse that gets (like wrinkles😉)

Also of course, our AIDs predispose us to infections cause they exhaust our immune system, so that’s another pie slice

Yet another pie slice in my case is early onset Primary Immunodeficiency Disease

& there are pie slices relating to various meds that increase vulnerability to infections - especially any AID immunosuppression meds

Thanks again for this discussion! Understanding these dynamics helps me a lot...eg to reconcile myself to being on long term daily antibiotics + weekly DIY immunomodulation dose subcutaneous immunoglobulin G replacement therapy...cause no way do I ever want to go back to those nightmare decades of active urinary tract infections

Hope things feel at least a bit better this morning 🤞

💞💞💞💞💞💞

[skylark15 in reply to EOLHPC]

Hi, Coco. Thank you for good wishes and I am feeling somewhat better: I could probably fight my way out of a paper bag today 😌. Txx

[EOLHPC in reply to skylark15]

😅❣️👏👏👏👏💞💞💞💞🍀🤞🍀🤞

[Treetop33]

UTIs trigger a flare for me, but nothing as extreme as you are experiencing. As people have said, approach your doctor. You may have another infection of course, viral or otherwise. We all think Covid, and rightly so, but there are other one's floating about now people are circulating more. Under medication as Barnclown suggests might be something to explore. Take care x

[skylark15 in reply to Treetop33]

Thanks Treetop33 for your reply. Sad, isn't it, that we've all had to think first of Covid?

I've got lots to think about and doctors to contact in connection with this episode-later this week, when I feel stronger.

Xx

[TGSHJ71]

Hi Skylark , as you know flare ups can come anytime , anywhere , and its finding the trigger that is the constant battle , I recognise some of your symptoms , its bad enough having just one of them , but when they all come at once its very depressing and debilitating.For me personally "antibiotics" are a nightmare for me and my GP , I am a sensitive soul , and depending which part of my body needs treating , means a search through her well worn medical journal.

I found for my water infection at long last one that worked and was easy to take , so perhaps this might suit you,

Its ...... FOSFOMYCIN GRANULES 3G , you dissolve it in water and it tastes ok as medicines go.

Maybe something to think about next time you are poorly with another infection .

Hope this helps

[skylark15 in reply to TGSHJ71]

Hi, TGSHJ71. Fosfomycin sounds well worth suggesting. Thank you and if another UTI pounces on me (as a similarly afflicted friend said), I've made a note of it.

I worry about antibiotics knocking out my good gut bacteria...so I'm going to try kimchi. Not sure if it'll help restore the poor little bugs but worth a try, when I get my appetite back. I might post another question on here asking about people's experience of taking 'probiotics' or similar.

Xx