Do I have lupus?

[Cleg]

Hello,

I'm new to the community and hoping someone can advise me on whether they think my symptoms sound like lupus and if I should book a private consultation with a rheumatologist? My GP is not particularly helpful and I’m at loss of what to do. Any advice given would be gratefully received. Thanks in advance!

I have a range of symptoms, which have snowballed since having my second child (21 months ago).

Here’s what’s going on:

Lungs

Recurrent chest infections and severe worsening of asthma symptoms. I’m currently 3 weeks into a nasty infection that won’t clear. Had to go on a nebulizer as couldn’t breathe. On second course of antibiotics but still wheezing constantly with pain in my chest. A course of prednisolone gave short term relief but fever went back up to 40 degrees once I’d finished the course.

Docs put it down to asthma making the chest infection worse, but inhalers don’t offer any relief.

Eyes

Diagnosed with allergic conjunctivitis, blepharitis and dry eye. These started the month after I gave birth. Been on prednisolone eye drops for past 20 months, which is keeping things under control but I still have flare ups where I feel like needles are plunged into my eyes. Eyes are extremely photosensitive.

Gastro

Changes in bowel habits. Diagnosed with IBS. Tested negative for coeliac. Colonoscopy and gastroscopy clear.

Skin

History of hives and allergic reactions in the sun (wear SPF 50 everyday of the year). Had a new rash appear on chest, scalp and neck about 4 months ago. GP doesn’t know what it is. Rash cleared temporarily with the pred tablets I took for my lungs, but it’s starting to come back now though. Can sometimes be extremely itchy.

Joints

Tingling/pain in ankles, toes and fingers, also occasionally in knees and wrists. Legs have given way 3 times but then ok again 10 minutes later. No swelling.

General

Fatigue

Brain fog

Recurrent infections and sore throats

Headaches that start at base of skull in the neck and radiate upwards

Persistent low grade temperature

Allergic rhinitis

Hair and eyebrow loss

Night sweats

Tooth infection that wouldn’t clear with 3 lots of antibiotics (from a root canal done 8 years ago!)

Blood test results

Raised ESR, CRP and IGA. Not been tested for any of the lupus screening tests (ANA etc).

Do these sound like lupus symptoms? Hope to hear from someone soon. Thank you so much.

[PMRpro]

Are you telling me that "GP doesn’t know what it is" is the best you have got with a catalogue like that? If he doesn't know - then it is up to him to refer you to someone who MIGHT have an idea. It might not be lupus, not qualified to speak to that as I haven't got it, but you have the symptoms of an autoimmune illness of some sort. That needs a specialist opinion, not from a GP who by definition isn't.

It is your right - and if your current GP won't do something then ask for an appointment with another member of the practice. If you can't find one who will listen then speak to the practice manager. Failing all that - change practice and be up front with them about the problem.

But when you go to the doctor I'd suggest you take someone with you who is also aware of the problems you have and how long you have been looking for an answer. Your partner, mum, friend. It is amazing how having a 3rd person in the room can concentrate a GP's mind, especially, I hate to have to say, if it is a male. It shouldn't be so but it often is.

[LUPUSadmin]

Hi Cleg.

Welcome to the community! LUPUS UK aren't medical professionals so we're unable to say whether or not this is lupus, especially as the condition is so variable. One person might have one set of symptoms and another a completely different set. I'm sorry that you've had difficulty with your GP. You are entitled to a second opinion on the NHS so perhaps you could ask to be referred on to a rheumatologist?

If you'd like a free information pack about lupus then you can request or download one from lupusuk.org.uk/contact-us

George

[Cleg in reply to LUPUSadmin]

Thank you

[Cleg]

Thanks for your comments, you have reassured me that I'm not going mad as I also think it's an autoimmune issue. My GP is just looking at everything individually and says they don't think the symptoms are related. But everything went crazy ever since I had my baby, which I've read can quite often trigger autoimmune issues. I will seek a second opinion - and take my husband with me! Thanks again

[morgan244 in reply to Cleg]

Hi Cleg

Just read your post.

I had the same problem 13 years ago !! All your signs and symptoms and Pulmonary Emboli (X2), DVT X3.

He started me on Adpirin and Plaquenil & Pred. Before I saw him 6 weeks later I had another PE and pericarditis! and my consultant in the hospital when he heard about St Thomas's and Dr Hughes syarted me on warfarin !

I had to go to my GP who was kind but clueless and suggest Lupus; and asked to get a referall to St Thomas - Graham Hughes, had to go privately the first time, but within 15 minutes he had diagnosed me with Sjogrens, APL and Lupus and I had an appointment at St Thomas;s.

It took me 3 + years to get a diagnosis ! But this is the usual time I have heard to get a diagnosis.

I had seen 2 rheumatologists at home (Dr Hughes had heard of them and understood how useless they had been).

Get a referall to a good Lupus expert (not all rheumatologists are).

Good l;uck and do not give up!!

[ebaylady]

Completely agree with PMPpro, your GP should have referred you long ago! Ask for an urgent Rheumatology referral AND to your local eye clinic. I have had several bouts of scleritis which sound very similar and is classed as an emergency. Pain and photophobia should not be ignored, especially if recurring. It is shocking you have been left this long (but sadly not that unusual)

[Cleg in reply to ebaylady]

Thanks for the support, it's appreciated, I am going back to the doctors tomorrow as my chest infection isn't clearing after a second course of antibiotics and steroids. Going to push for a referral and hopefully a chest x ray as losing quite a bit of weight. Wish me luck!

[steven69]

I live in NZ yet once I had a brain before Lupus deprived me of it...smiles. I have somewhere a list of what is most likely to predict whether you have S.L.E. or not. Please do bare with me, it is informative....at least I found it so as I ticked many boxes.

Barbara

[Cleg in reply to steven69]

Thanks Barbara, that would be much appreciated.

p.s. I love that you've still got your sense of humour, always so important

[Bacardibabe76]

Hi Cleg.

Sorry to hear of all the problems you are going through and that your GP doesn't seem to know what to do.

I would definitely ask him for an ANA test at the very least if he refuses to refer you on. If not then ask for a second opinion, Which you are entitled to.

I was lucky with my GP who said enough is enough, I think there is something going on here and ordered the tests. I am ever so grateful to him for it as all my previous GPs just passed me to each other and only treated the one symptom at a time. That's why I'm glad my new surgery likes you to see your own doc each time.

They also believe my SLE flared up during IVF with my 4 year old and medically it's been a rough 5 years.

Keep pushing and I hope you get an answer soon. Be strong! 😀 And take care xxx

[Cleg in reply to Bacardibabe76]

Hi Barcardibabe76,

Thanks for sharing your experiences. They sound very similar. I've also been passed around lots of docs who all treat one symptom at a time. Unfortunately the symptoms seem to be unfolding like dominos so each time I go back, it's for something new and the doctors are so over-stretched they don't have time to read through my case history. I have had tests for coeliac and IBDs as I was having a lot of bowel problems but these came back negative. And my symptoms have moved on since then.

Got a good feeling about a new doctor I saw last week and hoping I get something sorted at an appointment tomorrow.

Hope you are doing ok. Stay strong and take care too.

Cxxx

[Bacardibabe76 in reply to Cleg]

Thank you

I hope your new doc is as good as you feel. Try writing stuff down in bullet points (as I've been told lots here) it does help.

Please keep us updated xxx

[Cleg]

Wanted to let you know that I saw my new doc today and she was amazing!

I am booked to have ANA and other antibody blood tests tomorrow. On Friday I'm having a chest x-ray, and she says the next step will be a rheumatologist.

Thank goodness. Can't tell you how relieved I am that something is being done.

Would recommend anyone in the same situation to keep persevering and change doctors if yours isn't helping. A good and interested GP makes a world of difference. I'm sticking with this one!

Thank you so much for all your support. I know I said it before, but it really helped to hear that I wasn't going mad and that my symptoms did suggest that something else might be going on.

Best wishes to you all.

xxx

ps. Barcardibabe, I took a bulleted list, thanks for the tip! x

[tracyxx]

I started mine after having children until I got the rash from going holiday only stayed in the uk everything came back normal even when had a ct scan and mri have a blackout after second child after bad flu for few months at least cant remember how long was ill for put it down to sleep less nights at first. wouldn't stop crying all though happy 7 year old now after all that.. keep trying wear spf 50.

[Pam-EDS]

I think you may well have Sjögren's with IgA and the ESR and CRP raised too. I think IgA is the marker for oral mucosa and certainly with both infammitory markers up you need an ANA test to find out what is really going on.