lupus diagnosis

[Sarahze]

I was told 4 weeks ago that I possibly have Lupus. Still waiting to see consultant at hospital. Have tried not to google too much. But concerned that it’s taken a while to have a conversation and a definite diagnosis. My main issue is a a long standing pleural effusion. GP has no information and has said wait for a hospital appt. It just seems like a long wait not knowing whether I have it or not.

[Spanielmadlady]

Everything about lupus is long and drawn out the average time it takes for diagnosis is 6 years ...for me it took 5 years.lupus is very complex with many illnesses overlapping so dont expect a "yes youve got lupus take this tablet and you will be fine."there are no quick answers or quick fixes I'm afraid .if you have got lupus and they start you on a treatment plan even that takes along time as it takes 6 months to get the full benefit from meds and if those dont work for you it's back to square one to try another.There is an 11 point criteria for lupus you may find useful and you will need certain bloods to be positive before some rheumatologists will even see you.

It's a very long rocky road...patience is a virtue . X

[Krazykat26]

Hi Sarah 🤗 welcome to the group..u will find out all about lupus n other autoimmune conditions on this fabulous forum!! It's totally normal for long waits to see specialists normally let alone with the current situation with covid.

Who was it who told u u might have lupus? Was it your GP? N if so do u know why he/she suspects lupus? For instance did u have a blood test or any other investigations?

There's no need to Google really..now that you're here u can ask questions n u will get replies from those of us who live with lupus 24/7..n there r loads of us so you're not alone!! 🌈😽😽Xx

[Sarahze in reply to Krazykat26]

Thank you. The pulmonary consultant at the hospital suspects Lupus. Positive ANA test and raised eosinophils. Just started B12 injections. Investigations started after I had a pleural effusion was noticed after having COVID. But have had a long history of a pleural effusion. The fluid sample from the lung also contained glucose.

[Spanielmadlady in reply to Sarahze]

What was ANA result ? Some rheumatologists wont see you without a positive DS-DNA test

[Sarahze in reply to Spanielmadlady]

The dsDNA antibodies are noted as 91 and eosinophilila of 0.6.

[Krazykat26 in reply to Sarahze]

So you've had covid too? Sorry to hear that. We have had a few ladies join us recently who have been diagnosed with lupus after having caught covid. As spaniel mad lady says there is an 11 point criteria which shows the symptoms of lupus..do u have any rashes? Fatigue? Poor concentration? Joint pains? It's important that u are aware of all the symptoms of lupus..although we have it..it differs from patient to patient!!

Many of us (myself included) keep a symptom diary so that we can track our symptoms..usually before a diagnosis there r quite a few unusual symptoms..some come n go n others become bigger problems..some go away!! It's a minefield but keeping track of things helps me to prepare before appts. Also take photos of any skin involvement.

The ANA positive can occur in healthy adults..if lupus is suspected n the ANA is high enough to warrant further investigations the sample will be sent for a ds DNA test..this is a clearer indication of possible lupus. 🌈😽😽Xx

[Sarahze in reply to Krazykat26]

Thanks for all your advice. the dsDNA antibodies were 91 so very high. Just have to wait for an assessment by the rheumatologist. No rashes - except in the sun i get blisters - not painful or itchy. Occasional joint pain - but expect this at 54. Definitely poor concentration adn fatigue - but also put this down to the menopause! Appreciate all the information.

[Krazykat26 in reply to Sarahze]

Ok well stick with us n we'll get u through it..I'm glad u posted! 😁 N menopause oh yeah that's when lupus turned up in my life too 😔Photosensitivity is common so I will just say take extra special precautions in the sun..u get blisters now that aren't much of a problem to u but if u do have lupus sensitivity to UV rays could increase combined with the fact that when u do get treatment done of the meds make us photosensitive.

🌈😽😽Xx

[Sarahze in reply to Krazykat26]

Ok - thanks. I'll keep you updated.

[baba]

Read Lupus UK website, for accurate information. Lots of downloadable information, on all aspects of Lupus.

Best wishes.

lupusuk.org.uk/

[Sarahze in reply to baba]

Thanks

[Hidden]

Hi

Ive recently been diagnosed last month. They did kidney biospys and all other tests within 2 weeks i was diagnosed and put on a treatment plan.

Im on week 5 of it now. Its all new to me too

Were in this together. Always pray they find a cure. All these horrible conditions with no cures yet baffle me.

Everyones really nice on here so dont google i google and see the worst stuff and worst stories and makes me panic . Google is the worst.

Anyway you got this. Be strong (i need to take my own advice lol)

[Sarahze in reply to Hidden]

Please can I ask what started the investigations? Did you have any problems with your kidneys?

[Spanielmadlady in reply to Sarahze]

60% of lupies have kidney involvement without knowing as it doesnt give many symptoms. I have lupus nephritis diagnosed by biopsy in 2018 which is the only way to get a definitive diagnosis of kidney involvement

[Sarahze in reply to Spanielmadlady]

Ok - thanks.

[Spanielmadlady in reply to Sarahze]

Foamy urine, excessive protein and high bp can also be symptoms...there is generally no pain with LN

[Sunflowers_2020 in reply to Spanielmadlady]

Hi Spanielmadlady, can I ask how do they know you have kidney problem? I was diagnosed just before the lockdown last year. Did you have to request a biopsy? What does the biopsy involve?

[Spanielmadlady in reply to Sunflowers_2020]

Hi.you dont know as it gives very few symptoms. Foamy urine, high bp and oedema can be visual signs but that's it.this was how mine became apparent First rheumatology appointmen (aug 18).....routine labstick off the scale for ( non visible) blood and protein

Phonecall from royal preston asking me to go to renal unit asap

Ultrasound showed damage

Another phonecall from royal preston saying I needed biopsy asap (oct18) diagnosis of class v lupus nephritis now under kidney specialist.

You should have your urine tested as a matter of course.

Biopsy involves taking a sample of tissue for the left kidney through your back lying on your stomach.you then have to lie completely still for 6 hrs ..not even allowed up for the loo.no driving,lifting etc for several days afterwards.

It wasnt that bad...I wouldn't stress if I had to have another one.xx

[Hidden in reply to Sarahze]

I had a whole lot of symptoms that made them point towards lupus. My kidneys were involved because i was leaking protien. My urine was like orange but spanielmadlady is right sometimes there may not be any symptoms or maybe swelling.

[Sarahze]

Ok - thanks.

[Spotty-ewe]

Hi Sarah, a warm welcome to the forum. I remember how anxious I was while waiting to hear whether I had Lupus or not, so I really sympathise. But you’ve come to the right place for reassurance, support and advice to help you get through the waiting period. I didn’t know about this forum when I went through the diagnosis period so it was a lonely anxious period for me. I can’t add any more advice than Kat and Spanielmadlady have already given you but you have my support and I know you’ll get answers here to any of your concerns. It is a scary period you are going through but we’ve all come through it and we are all here to help and support you. Keep us posted with how things go. 🤗xx

[CecilyParsley]

Hi Sarahze and welcome to this wonderful forum. The journey for diagnosis is a marathon rather than a sprint. Some people take years to get a definitive diagnosis as others have said here. The fact that you have had Covid too could complicate matters as I only just found out that tests on Covid patients have shown that some produce high levels of ANA and other results found in Lupus patients. I am unsure how extensive the research is however, perhaps others here can be more informative than myself. You are on the right path and although it might take some time, hopefully you will get the care you need to help you. Good luck. Let us know how you get on xx