Lupus can anyone talk to me about it?

[AdelindSchade]

I am currently waiting for further tests to see if I might have lupus. They haven't specifically said lupus to me but it said on a letter ?SLE. Having googled I dont have some of the main things, no skin issues, joints are not swollen. I have longstanding thyroid issues and for the last few months intermittent but extreme chest pain which seems to be being caused by inflammation. They also found small PE on lung which is unrelated to the pain. My perception is that when this flares up it is linked to monthly cycle although I am perimenopausal.

I am wondering what some of the treatments are? If you have it how do you manage it?

I have lupus - and hypothyroidism. Allergy induced Asthma, Addison’s, sjorgens, a pituitary tumour etc (generally once you have one autoimmune condition you can get more!)!

Chest pain is often a symptom of lupus due to muscle inflammation (although chest pain should obviously always be checked out to make sure it’s not heart related). It can also cause blood clotting issues - although this isn’t always the case (I don’t have any issues with this).

My symptoms were / are chest pains, hip pain and fatigue. I have a lot of issues with sjorgens syndrome which often overlaps with lupus - google sjorgens. I had huge issues with recurrent vaginal and oral thrush (caused by dryness).

I was started on hydroxy which is the standard first line treatment for lupus but it made my heart race super fast so I had to come off it. I’ve been on methotrexate injections (like an epi pen I do them myself) for about 3 months now and find them helpful.

I can’t seem to copy the link but there’s a great Facebook group called “Lupus support UK” which is well worth joining.

Meant to add - lupus doesn’t affect everyone the same ways. I don’t have any skin issues at all, although for a lot of people those will be the main thing they’ve got.

Thank you BagelsandBrie I am going to google those things. They haven't spoken to me about treatment obviously as not confirmed but I am interested to know as things seem to be pointing in this direction. I also have allergy induced asthma - didn't know that might be related.

@AdelindSchade

Thank you BagelsandBrie I am going to google those things. They haven't spoken to me about treatment obviously as not confirmed but I am interested to know as things seem to be pointing in this direction. I also have allergy induced asthma - didn't know that might be related.

Lupus is basically an over reactive immune system - so allergies and reactions to insect bites for example can be pretty extreme! (Explains the allergy induced asthma). All treatments are based on the idea of reducing / dampening down the immune system. So immune suppressant drugs, no multi vitamins (unless specific ones related to a particular deficiency you have- I take vitamin D and prescription iron tablets for anaemia but have been told not to take anything else).

Hope you manage to get some help / answers with it all.

Thank you! And thanks for the info.

Gatecrashing this thread as I’m waiting for a differential diagnosis between RA, psoriatic arthritis and lupus. Interesting to hear how wide ranging the symptoms of lupus are, as I don’t have the butterfly rash - I do have horrible joints and tiredness though....

Gatecrash away! How long will you have to wait for results? They said 3 weeks to me.

I have always wondered if i have lupus! Started getting pains in my knee at 27 ( im now in my 40s) this progressed to pains all over, joints and muscular. Ive had skin issues, ibs, brain fog, reoccurring mouth ulcers! The symptoms are always 10x worse when my period is due and for the first couple of days of bleeding! Doctors are adamant that its a combination of osteoarthritis and fibromyalgia 🙄.

@Bagelsandbrie sorry to hijack but how is pituitary tumour linked? I’m asking as I was diagnosed with one a few years ago and then more recently diagnosed with APS among other things x

[quote Littlegoth]@Bagelsandbrie sorry to hijack but how is pituitary tumour linked? I’m asking as I was diagnosed with one a few years ago and then more recently diagnosed with APS among other things x[/quote]
It isn’t specifically linked to lupus but it is an autoimmune condition. If you have one autoimmune condition then you often go on to develop others.

pabloescobarselasticband have they done any blood tests on you?

I don't want to be told I have it but I am also dreading a more vague diagnosis or lack of a diagnosis.

Yes lots of bloods, im anaemic, low on vit d and have a high white blood cell count apparently, also inflammatory markers in my blood ( whatever they may be lol)

Just be aware that having negative bloods doesn’t necessarily completely rule out lupus. You can have sero negative lupus where bloods are normal but you still have all the symptoms of lupus and although it’s rarer they can still give a diagnosis based on symptoms and begin treatment based on symptoms.

More about diagnosis here -

www.lupusuk.org.uk/medical/lupus-diagnosis-treatment/introduction-to-lupus/testing-for-lupus/

Me. Diagnosed whilst pregnant with 2nd dd in 2015. It got quite bad before anything was done as the gp fobbed me off with excuses like "reactive arthritis" and "it's just pregnancy". Then once I got my formal diagnosis it was twice a week visits to the local hospital. Once I was diagnosed it felt like a massive relief.

I think it effects everyone really differently and treatment can look really different. I'm currently stable on azathioprine and hydroxychloriquine. My treatment has changed a lot over the years, as has the illness. I've had six cycles of cyclophosphamide in the past as my kidney involvement was high, it really knocked it into submission which was great. Tried steroids, methotrexate and other drugs at different times.

I think the key to coping it listening to your body, which is rich from me as every time I flare it's because I've been doing too much!! But it's easy to do too much when you're feeling good. Lupus uk is a great resource. I did join a group on Facebook but I couldn't cope with some of the self pity on there, it's not how I deal with it at all. I think if I started the whole pity party thing, or if others did, it would be detrimental to me.

I wish you all the best on your journey, please shout if you have any questions.

This is all really helpful thank you!
Lolbrador yes before this episode I has working really hard and been a bit manic really when I think about it so that makes sense. I am definitely a glass half full type of a person so will try to be positive.

Re the blood tests - the doctor in hospital told me I had been tested for lupus in 2010. I have no memory of this or why but clearly someone must have thought something. So it must have been negative but if I get a diagnosis now then there was clearly something gojng on back then.

I have it. Extreme fatigue and hair loss was what took me to the Gp. Once I started on Hydroxychloroquine the fatigue got so much better.
My main problems are chest pain. I regularly get pleurisy, I actually have it at the moment, and costochondritis.
I had PE two years ago but don't know if its linked, though I susspect it was because I was in the midst of a big flare at the time.
Looking back there were signs from when I wss young, allergic reactions, thrush, miscarriages etc.
Day to day its not too bad, I have maybe 2 or 3 biggish flares a year but unfortunately my rheumatologist is a twat so get no help there.

Ah yes I've had miscarriages too. Hope you feel better soon Cocolapew. Shame it's such a lottery with medical professionals.