Do You Need to be Flaring For Diagnosis?

[Harpee]

Hello

I have a newbie’s question about diagnosis, please.

Do you need to be experiencing symptoms such as visible butterfly rash and red/swollen joints at the time you see the rheumatologist for a diagnosis?

Or can/will they go from photos and history?

I’ve had symptoms that could be SLE for several years and just had a positive ANA (first time my ANA has been tested). GP has referred me to rheumatology and I’m now on the long waiting list for an appointment.

I know from experience that I have 2-6 months of symptoms and then a few months of ‘remission’ when I’m ok. My concern is that I’ll wait all that time only to get an appointment on a day when I’m fine - and I’ll be sent away and that will be that again.

Thank you.

[Potatoheat]

Hopefully they will go by your blood test and past history. Make sure you have a list of all your various symptoms over time. It's hard to recall things when you are face to face, mind goes blank , then after I think oh dam* it I should have mentioned such and such. If they are good at their job they will get it and hopefully progress from there. I was so lucky 30 years ago to have a wonderful gp who referred me on to a consultant who blinded me with science, but at least I was in the system and put on to hydroxychloroquin and physio. Also Voltarol ( oral) !! Who even gets that these days, it was awful , no warnings about stomach problems . In my case it eventually got worse during menopause although no one apart from me mentioned that might be a trigger, now on immunesuppressants and steroids but Lupus is under control it's just the side effects of the drugs ie. Irritable bowel .

Anyway , hoping they cotton on to your needs, keep asking questions, I find rheumys arnt always necessarily up to date with Lupus , my last one was at a Centre of Excellence but since I've moved they don't seem have much interest or even specialist nurses. I know I could go back but it's a 3+ hour trip so while I'm OK ish will make do with local.

Fingers crossed they give you some answers. Do you have a local Lupus group through Lupus UK ? Best of luck ❤️

[Harpee in reply to Potatoheat]

Thank you so much for taking the time to answer my question. That’s really helpful! I will definitely take a list of symptoms with me. Will probably wait until a diagnosis before approaching a local lupus group. This has been going on for some years (18 actually) and there’s been quite a few false trails. But if I get anywhere, I’ll join a lupus group for sure. Thank you again.

[CSLO]

Morning Harpee

Go to your appointment well armed with detail and evidence of symptoms. It's Sod's law that you'll turn up on the day and look the picture of health!

Bloods don't always present an obvious picture; whilst my ANA is persistently positive, jigging between 1:80 to 1:640, nothing else is positive. My joints can be really grim with obvious inflammation and yet my inflammation markers are unchanged. I have very obvious Dermatomyositis/SLE rashes but bloods are negative.

My rashes come and go, sometimes by the hour; there is always something going on somewhere but I was told to photograph everything, to keep a record of visible evidence.

I'd recommend taking in some notes in bullet point form with details of symptoms, and print photos if you can. When preparing, think outside the box. You mentioned rashes and swollen joints but do you have mouth or nasal ulcers, headaches or migraine, dry eyes or mouth, unusual fatigue, thinning hair, are your joint problems symmetrical: try to present a really accurate list of anything you're experiencing even if it only comes in waves. It may be unrelated but it may not.

Our docs can only see what's in front of them but with symptoms that come and go that's tricky. We have to present 'the package' to them with as much evidence as is possible.

Good luck with your appointment, it can be nerve racking in the beginning and that's why it's better to be well prepared, you then won't forget to mention something.

All good wishes to you.

[Harpee in reply to CSLO]

Thank you so much for replying to my question. I do have photos of rashes, swollen joints etc so I can print those and take with me. It was really helpful to know what you said about things changing by the hour. This was one of the reasons the GP didn’t take any notice of my rash back in 2006 as he said it would have lasted longer if it were a lupus rash. So it’s good to know how quickly things can fluctuate. I have mouth ulcers, dry eyes, symmetrical joint involvement and bad fatigue. I’ve also been diagnosed with oracular migraine. I will be prepared for this one! Thank you again.

[smeackles]

I can only say from my daughters experience that they did take photos (date stamped from her phone) as evidence to review - although this was more to show progression of rash over days/weeks & she was particularly bad when seen.

I would hope you don't have such a long wait to see a rheumatologist to be able to go down the diagnosis path. In our case it started in April and was mis diagnosed as various skin conditions before a GP flagged Lupus as a possibility and with all symptoms combined and so many tests diagnosis was given in June. She hasn't had flare ups as it has never settled - still waiting on meds to achieve that. But getting the diagnosis is key to start meds that could bring it under control so you don't repeat the pattern you have been.

Hope you get somewhere with evidence of your symptoms.

[Harpee in reply to smeackles]

Thank you very much for taking the time to reply and for your supportive comments. I hope I won’t have to wait too much longer too. I hope your daughter’s meds get sorted out soon and she starts to feel much better. Best wishes to you.

[tiredmum]

keep a log of all your symptoms and how they affect you. Take as many photos as possible of rashes, swollen joints, ulcers etc and print them off to give to consultant.

I can almost guarantee you will be feeling a bit better when you have your appointment.

I have sero negative lupus and if it wasn’t for physical evidence I doubt I would’ve been diagnosed.

Good luck xx

[Harpee in reply to tiredmum]

Thank you very much for taking the time to reply. I will get those photos printed off for sure and a symptom log. It’s really helpful to know that they went on physical evidence in your case for a diagnosis. Gives me hope that I will be taken seriously even if I look great on the day Thank you again.

[StriatedCaracara]

I drew a gingerbread man diagram and annotated it with all the symptoms.Sometimes symptoms were occurring together, also some some symptoms appeared before others.

I used a key so could indicate early symptoms, and then additional symptoms I got.

I found having a diagram helped and on it I could summarise everything. So less likely to forget at the appointment.

Emailed in photo of picture, prior to appointment, and took two printed off copies of picture to the appointment.

[Harpee in reply to StriatedCaracara]

Thank you very much for your reply. I really like your idea of the gingerbread man. I was wondering whether to go by appearance date order or group my symptoms. Having read your suggestions, I think I will do both and then it’s up to them! Thank you again.