Newly positive S.L.E. test

[SWinNorfolk]

Hi all, just joined. I’ve had a number of symptoms of lupus over the years, but not the butterfly rash or joint swelling or pain. I recently had the ana test which came back positive and have been referred to a rheumatologist. There aren’t any appointments currently and with waiting lists I may not be seen for months.

While I wait to be diagnosed I wondered if anyone can help by sharing your experience of the stage I’m at, waiting for referral, wait times and what to expect?

Any tips on managing fatigue? I’ve had headaches and migraines which have been worse in recent months, does anyone else experience these?

My other main symptoms are mouth sores (geographical tongue- particularly worse with anything too citric), some travelling pain, muscle pain at times, balance problems, thinking and memory problems, colitis, fever on and off and hair loss.

Any one have anything similar and how did you get diagnosed? Also, I realise that as I haven’t yet been diagnosed it could be something else, but as the referral seems so far off I want to see what I can do in the meantime.

Thanks in advance for any help and sharing xxx

[Haubrey1]

Hi there 👋

You’re in good company here. Lots of people facing uncertainty over diagnosis and very helpful, knowledgable and friendly people.

I might know something of what you’re going through. I had blood tests in January that came back positive for ANA and anti dsDNA after 8 years of being chronically ill. I was referred expecting an appointment in June/July time based on waiting lists at the time but then Covid happened. My symptoms have worsened and are more numerous than they were back then so to cut a long story short, my GP agreed to try to expedite my referral and it must have worked as I received a letter not long after with a telephone appointment with a rheumatologist for a couple of weeks time. I have just had a load more blood tests today before an in-person appointment next Thursday.

It’s definitely worth keeping a symptom diary for the time being. Try to take note of as much as you can. My expedite was granted due to a long document of symptoms with photos that I sent for my GP to attach to the expedite, and it really helps you to keep track of how you’re doing and if any new symptoms are arising and if so, it can also help you to figure out what might be exacerbating some of your symptoms (photosensitivity for example).

Did you test positive for any antibodies? Usually if you test positive for ANA they will run an antibody panel.

A very warm welcome and best wishes,

Haubrey1

[SWinNorfolk in reply to Haubrey1]

Thanks so much for responding to me, helpful to know that there are people in a similar position. I’ve felt like a lot of my symptoms were in my head for so long.

I’m so pleased to hear you’re going to be seen sooner, sounds like you’ve really been through it and lockdown can’t have helped.

I’ve just been in touch with the dr to see if I can go private to be seen sooner, I didn’t feel there was an option to push to be seen sooner here, but I’m willing to pay as I can’t imagine having to wait u til next year to be seen to be diagnosed.

I’ve started a symptoms diary, good advice, trying to log everything.

I’ve struggled to read the test results, I can only see the lines for positive antinuclear antibody test and the dsDNA, they’re all online, I haven’t had any further tests yet as my dr said it wasn’t her specialism, and if need to see a rheumatologist. Maybe that’s what they’ll test for next, should I be pushing for that test do you think?

Thanks so much for your help

Sarah

[Haubrey1 in reply to SWinNorfolk]

Totally understand, Sarah. I had booked a private consultation too before my NHS appointment letter came through. I was able to cancel it at the last minute thankfully. It’s definitely worth considering at the moment given the crazy waiting lists. Lupus UK have a list of doctors who are lupus experts so you could give them a ring and see if there are any in your area who do private consultations. It seems crazy that the waiting list for NHS appointments are backed up into next year yet I was able to get a private consultation with a chosen rheumatology consultant the next week!

Did you get a positive result for the anti-dsDNA if you don’t mind me asking? It is highly specific to lupus and so can be instrumental in getting a diagnosis alongside symptoms and ANA. There are others on here with lupus who have a different mixture of antibodies without being positive for anti-dsDNA ones, so it is definitely possible to have lupus without testing positive for anti-dsDNA, but it is a very helpful and specific marker for lupus.

From what I have experienced, your rheumatologist might request more bloods to be done after initial consultation depending on what they think could be going on after seeing or speaking to you. For example, although lupus was on the radar after my bloods in January, when I spoke to a consultant on the phone they thought it sounded like there could be a number of things going on so they are doing a full MOT of tests relating to autoimmune conditions. Some of these are repeated ones that were included in my prior blood test in Jan and some of them are more specialised ones that I didn’t have last time. I think given my high level of anti-dsDNA antibodies, I will likely have a lupus diagnosis quite soon (especially if it’s still high in this latest round) but there may be other things in the mix that may be picked up by these other tests.

I hope that helps and doesn’t just sound like a lot of waffle! 🧇

[SWinNorfolk in reply to Haubrey1]

So good to hear that you’re getting somewhere and everything is being investigated.

I did have a positive dsDNA result as well as the ana, I had read somewhere else that it was more likely to point towards Lupus but as I don’t have all symptoms currently I’ve been cautious about asking questions. I guess I don’t want to seem like I’m over reacting when other people se to be suffering more, but really what I want (especially as I have 2 young children) is to find out if I can prevent things from getting worse or changing my lifestyle to prevent things, do you know what I mean?

I’ve just heard back from my drs and they’ve referred me privately now. Hopefully I’ll get somewhere soon.

Thanks so much, it’s really great to talk to someone about it.

[Haubrey1 in reply to SWinNorfolk]

Definitely, I know what you mean and you’re definitely not overreacting 😊 It sounds very sensible indeed, especially as the sooner a correct diagnosis can be made, the better.

Really pleased to hear your GP has sorted the private referral for you. Do keep us in the loop and let us know how you get on x

[Spanielmadlady in reply to SWinNorfolk]

Hi sorry you find yourself here.Many of us have been lead to believe it's all in our heads so you are far from alone. Neither are you overreacting. Please whatever you do dont play anything down youve got to tell them everything even if you dont think its relevent.dont be embarrassed theyve heard it all before as we all have lists of symptoms so long that it could be used as a social distance maker ! Tell them how it impacts on your life and your family.Hopefully you will get an understanding rheumatologist who will look at you as a whole and not just as results from the path lab.you need full bloods as well as ANA ,DS-DNA, compliments and immungloblins.they should also test your urine for signs of kidney involvement.thyroid too maybe.

With regards to fatigue...sleep ,sleep and sleep some more.naps during the day will give you a boost to get you through to bedtime.

There are no quick fixes here so patience is a virtue .drugs take months to work and if it doesnt work for you it's back to square one to try another drug.there is alot to process so try to educate yourself and take time to get your head around it all but dont panic there are plenty of lovely people on here who have been where you are now ( me included) who have lots of advice and support to share.dont compare yourself to anyone else as we are all affected differently.

For the majority of us it has taken years to get diagnosed and a treatment plan in place (5yrs for me) .its a long rollercoaster of a ride but you will get there. Sending best wishes xx

[SWinNorfolk in reply to Spanielmadlady]

Thank you so much for responding. That’s always the fear that it might be all in my head. But the more I read and the support so far here is really helping.

Thanks for the tip on not downplaying symptoms, I got to a point where I felt so rubbish and low from things that I pushed to have autoimmune tests done, and I’m so pleased I did.

Funny I’ve often have protein in my urine when feeling ill with no other symptoms of a water infections, which always confused drs.

Finding it quite mind blowing exploring the new possible way of living but good to be informed. Great to have somewhere to speak to people about this now.

Thanks again and be wishes to you xxx

[Spanielmadlady in reply to SWinNorfolk]

Unfortunately Gps just dont know how to handle us lupies.Something like 60% have kidney involvement which gives no outward signs.i was diagnosed with class 5 lupus nephritis after a routine dipstick at my first rheumatology appointment was off the scale.i had a biopsy and now have a kidney specialist in my multi disciplinary team along with my rheumatologist, my chest specialist and my endocrinologist.

Yes I get migraines...never used too.i suspect mine are caused by the sun so hat,factor 50+ and cover up head to toe are a must.

Dont be surprised if you are told you have other AI illnesses as they often go hand in hand...sjorgens, thyroid problems, fibromyalgia, b12 deficiency anemia to name but a few..

I should of added be kind to yourself, pace yourself and learn to say no.

Google the spoon theory...its brilliant analogy of lupus. Have a peaceful evening xx

[katiebey]

I'm in a similar position found this group today. Was referred down neurology route then had blood test because of rash on arm (purpura). Came back positive ANA. Rheumatologist did not accept referral and sent it to dermatology. What a mess the NHS is in

[SWinNorfolk in reply to katiebey]

Sorry to hear that the rheumatology didn’t accept the referral. I’ve found the past 24 hours chatting in this group so helpful and feel like I understand more, even if I don’t get my diagnosis.

What are your next steps? Hopefully chatting on here will help x

[katiebey in reply to SWinNorfolk]

This group is great. I'm not familiar with all the technical terms yet.

[SWinNorfolk in reply to katiebey]

Me neither, learning so much. Best tip I’ve had is to keep a symptom diary as many things are linked that you might not have thought were before.