My next step in my journey after A&E visit - few questions for people who’s been diagnosed if poss?

[Staceylouise90]

After day 6 of what is looking like to be a flare up, I did end up in A&E.

Just thought I’d share my experience this week and thank you to everyone on this forum who has helped me in the right direction as gave me guidance of what has been the most challenging week for me.

Recap for anyone who’s new reading this:

I have been poorly for many years, with chest pain, leg and arm pains, continuous chest infections since Christmas ( bringing up bloody) thankfully I was referred to a respiratory consultant which showed on an X-ray that there is thickening on one side on my lung, I have a CT scan on Monday evening to confirm more on that.

Started becoming ill on Sunday just gone, now I look back was the beginning of a flare up, I called my GP Monday asking if my sputrum results in as respiratory was confident it was an infection and the damage Bronchiectasis is from continuous infections.

I later that even got a call from my GP to state 2 bloods tests from 6 weeks ago came back positive ANA (raised) and dsDNA positive and mentioned possiable lupus. Monday I had no clue what SLE was how this even got to this point and what’s going on with my body as I was bed ridden all week!

Wednesday I met with my GP who went into detail that she thinks with the results I have is SLE and could be attacking my lung and places me on presidone steriods.

Fast forward yesterday I couldn’t move, I was so poorly and my respiratory consultant called me later afternoon and advised me to go A&E, which I did and really was avoiding this all week!

Thankfully I met with a doctor who looked at my blood work and my symptoms knew exactly what was going on and called the rheumatologist on call, who stated that I sound for sure like this is SLE and is a flare up and again said it could be attacking my lung he said that if a person has a positive ANA and dsDNA Postive and raised mainly links to lupus (especially the dsDNA), I think for the first time hearing a doctor who in so many years hasn’t taken my pains, illness seriously hearing that this is what is really helped me today.

I have been referred to rheumatology as an urgent appointment, alongside the hospital increased the medication I am on and a urgent CT scan for Monday evening.

My questions are to anyone who’s had a diagnosis is:

Your first appointment how was it, did you get diagnosis after many appointments or more tests?

Has anyone experienced any damage to their lungs relating to lupus?

How long was it untill they placed you on suitable medication after you met with the consultant and just an overall outline of what I have to come with the rheumatologist based on my results I have currently and my symptoms which are:

Comes and goes :

Red face

Ulcers in mouth / lesions

Circle patch on stomach, appeared 1 week after a holiday aboard in the summer.

Coughing up blood when I have a chest infection - keep getting these!

When I’m having an episode:

Leg and arm pain - spreads across my entire body.

Breathless / wheezing / pain in left should blade and rib

Headaches

Bad fatigue - day 6 in bed

Brain fog/ do not feel with it.

Tests

Postive ANA raised

Postive dsDNA raises

CLIFF negative

High red blood cells

High ferritin levels

Low album levels

Low folate levels

Low b12

High bloods and said hypercholsterolmia - put on statins 6 months ago.

X-ray shows thickening of left lower lobe on my lung and spirtory shows narrowing of my airways.

Any advice would be useful

And again thank you everyone for your support this week! Xx

[Hidden]

Hi,

Glad you had a positive experience in A&E. With your symptoms I hope they are going to rule out other auto immune diseases such as Vasculitis as well? It can cause lung inflammation, coughing up blood and cross reactivity with ANA etc.

Have they tested your urine for the presence of blood or protein as sometimes it’s shows before blood tests for kidney function become deranged?

I would make sure you see a Rheumatologist with experience in the rarer, Rheumatic diseases, at the very least ask how many patients they have assessed with symptoms like yours.

Good luck and I hope you get answers soon.

[Hidden in reply to Hidden]

The link to the Vasculitis U.K. website, it’s usually ANCA associated Vasculitis such as GPA that has the potential to cause some of your symptoms. Not saying this is what you have but they should rule it out.

vasculitis.org.uk/about-vas...

[Staceylouise90 in reply to Hidden]

Thank you for your reply, I just don’t know what it is, also I was put on statins 6 months ago relating to a blood test that I had and said that was hypercholstermia... is that any help do you think? :/ x

[Hidden in reply to Staceylouise90]

Most people have symptoms that are a combination of red flags and red herrings, it takes an experienced Consultant to sort through them.

I think you need to concentrate on symptoms that are affecting your major organs, such as your lungs as they are the most concerning.

Beware that the prednisolone may blunt some of your symptoms and blood tests etc as it’s a powerful anti inflammatory. Has anyone checked your inflammatory markers such as ESR and CRP? You really need a full auto immune blood check including ANCA, complements etc. ANA and anti DsNA can be raised in other auto immune diseases, it doesn’t always point to Lupus.

Where in the UK do you stay?

[RachelD1972]

Hi, I’m pleased a&e was a positive experience. It can be daunting! I don’t have SLE but Rheumatoid arthritis and discoid lupus (which just affects the skin). Your Rheumy might repeat some tests but this is useful to set a marker on how you are moving forward. I had joint xrays but they are now there to form a comparison for joint damage as my RA progresses. He/she will probably start you off on a med straight away. The potential side effects can seem terrifying so I’d just say steer clear of google and use the reputable sites ie lupus UK for advice and info. Hope you start to feel better soon x

[AnyHill89]

Hi, sorry to hear you are suffering so terribly & I hope you get some respite too. Nearly 20yrs of ill health & even being retired on medical grounds from a career she loved, was my Mothers experience & looks like I am on same path. My Mum only got diagnosis of sjogrens/lupus when the illness caused degeneration of her lung. Now monitored by specialist hospital re lung conditions. She is prone to pleurisy & pneumonia & every time we think we are going to ‘lose her’. So I am crossing my fingers you get treatment & monitored for your condition asap. It is awful hearing how much & how long people suffer. Sending kindest regards & big hugs 🤗

[Kt43]

Hi Stacey, sorry just read this post after posting my last one! Basically to answer your other questions, I was diagnosed at my first rheumatology appointment. I don’t know if my cliff was positive or negative, I was just told that my blood tests meant it was 90% accurate for lupus. The appointment was about 45 minutes so fairly in depth and I got prednisolone that day. Hope this helps xxx

[Staceylouise90 in reply to Kt43]

Hello KT thank you, I’ve just read your response on the other post, I have seen 2 GPS, plus ended up at the emergency room Thursday evening and was placed on presidone, all doctors I’ve seen have said it’s sle, judging my blood work just I know ELISA and CLIFF one is more sentive than the other and I don’t want them to go oh it’s a false positive. I have a lot of symptoms and issues relating to SLE, or something similar, I’m just frustrated now as it’s been going on so many years and last 10 months has been bad. My GP Is referring to the rheumatologist plus I’m already under respiratory before these bloods came back with the current infections, thickening of my left lung and bringing up blood and breathless before these came to light this week ( blood work) they changed my CT to Monday, so by the time I see rheumatology I’ve know more on my long and also all my other tests and symptoms, just praying I get some answers. Thank you very much for explaining your station and I’m so glad you got a diagnosis. Xx

[Maureenpearl]

I was diagnosed in 2006 with lupus and 2007 after having lots of chest pains along with breathlessness was told the lupus has now damaged my lungs (Pulmonary Fibrosis).

I have been using oxygen since 2013. I had to ask to be tested for the oxygen, the nurses in the hospital when I was hospitalised saw how breathless I was getting and did not call the doctor.

The consultant should give you a definite diagnosis based on your blood results on your first visit.

Hope it all goes well for you.

God bless

Maureenpearl

[Staceylouise90 in reply to Maureenpearl]

Thank you Maureen for your comment, I’ve had an X-ray on my lungs, which showed thickening on the bottom lower lobe, she called that Bronchiectasis this was before the bloods had came to light and has now moved my CT to Monday evening. Can lupus cause thickening? How are you coping now with the diagnosis and your breathing etc? X

[Maureenpearl in reply to Staceylouise90]

Hi Staceylouise90,

Hi was told the lupus or MCTD has damaged the base of my lungs.

I cope very well, I don’t let it bother me as I put my faith in Jesus and hoping He will give wisdom to the doctors in knowing the best way to treat me (unless He decides to heal me supernaturally).

I use oxygen otherwise I would find it difficult to breathe and now the weather is damp I have to make sure my chest is covered when I go outside.

Please ask your consultant any medical questions so you have the correct answer.

Praying for a good report for your CT scan on Monday.

Take care.

God bless

Maureen 🙏🏽

[Flowersbush]

I have been sick since July just go appointment with my lupus doctor.Had rashes red hot flashes

[Staceylouise90 in reply to Flowersbush]

Sorry to hear you’ve been sick for so long, that’s such a longtime and waiting list! xx

[Flowersbush]

Had ulcers in my mouth too

[Lupusrelative]

Hi, so sorry to hear of your illnesses. With your bronchiextasis ask them to put you on a compressor nebulizer and antibiotics that you can use with the nebulizer. This was the only way my sister got relief. The nebulizer will help push those antibiotics deep into your lungs and clear it up. Oral antibiotics did nothing for her. Once you are feeling better use a saline solution with nebulizer to keep your lungs clear. Also ask them if scleroderma could be causing the thickening.

I do hope you feel better soon and that they sort everything out for you

[Staceylouise90 in reply to Lupusrelative]

Thank you, I will speak to my consultant once she’s seen my CT scan ( which is this evening) and discuss what options are and what they can give me etc. Did your sister have lung issues through lupus? What is scleroderma? I will ask her that tomorrow morning xx

[Lupusrelative in reply to Staceylouise90]

Yes she did unfortunately. Scleroderma is thickening of the tissues etc

[Chris21]

Hope your scan gives the answers you’re looking for, it can be a bit scary when you’re suddenly given all these names and not a clue what it all means. The lupus uk website has information books that help you understand a little about how lupus affects the body.

When you have your appointments it can be helpful to have another person with you as sometimes we don’t always take it in ( I blame brain fog 😉)

Lupus can attack any of the organs. I’m lucky in that so far I’ve only got mild fibrosis and only get short of breath which an inhaler helps. Biggest one for me is PBC (liver failure) but it was caught quickly and it’s under control.

Good luck for tonight it sounds like your finally on the right road. X

[kyliexc]

Oh my!! What a headache it is trying to have these types of illnesses diagnosed!

My flare up started January of 2017 (22 years old), took 3 months to officially diagnose. Repeated tests while I was feverish, had slight rashes, anemia, extreme joint pain and fatigue. First time I went to the doctor I remember she said it might possibly be lupus, but they needed blood work done to confirm. Running back and forth, they finally put me on Naproxen for the pain. Following that, pain went away for a tick, then came back again just as bad as before. I couldn't even bend down or put on a top without hurting.

Finally she referred me to a private rheumy. He confirmed the diagnosis in mid March and put me on my first dose of lupus meds (200 mg plaquenil daily, 20mg methotrexate, prednisolone) folic acid and somac. All the symptoms basically vanished... but then slowly started coming back. Got my blood work done again before getting an urgent call to go in to visit this rheumy or go to the emergency department (not what you want to hear). Was there for a week, but have been feeling 'normal' since then. I was slowly tapered off the steroids, so now take 2 x 20mg tablets of Plaquenil a day and 2 x 10mg methotrexate a week for the past 2 years. I have my bloods done and see a rheumy every 3 months and tried to taper off the methotrexate a bit, but my blood work started looking unstable.

It's a bloody rollercoaster, but I do hope you find the right treatment for yourself soon! I was feeling so poorly in 2017, but once they figured it out I've been able to live a relatively normal life (working, travelling, getting back into sports)! Xx

[Staceylouise90]

Thanks Kylie for your message. This is now day 8 and I’m still struggling than I did a week ago, I’m glad your living a normal life as much as possible that’s positive to hear. I think the journey to getting that diagnosis and correct medication is a long road, which I now seem to be on the right track, nevertheless feel like I’m stuck also, I just want to feel better I guess without these pains. It’s just the feeling unwell I am struggling with this past week. Thank you for your message I really appreciate it. I am on presidone which’s as started last week from my GP it’s ease some pain, but not in my back and stomach and chest. Xx

[KayHimm in reply to Staceylouise90]

You are on moderate dose prednisone. Once your doctors have all the information they need, they can go a lot higher and will if they need to in order to get you in remission. Like Kylie, they can add medications as they wean you off.

Hope you get your CT scan results soon.

XK