Confused about lupus

[maddien]

Hiya. can someone advise me please. can i have lupus without ever having a rash. many thanks

[maddien]

Thank you for your reply. i was a little confused as i have been referred to a rheumatologist as i have had most symptoms apart from a rash for two years or more. many people say it is not lupus without a rash

[Author_ink in reply to maddien]

Not true. It took me a couple of yrs to get a bruise

[Author_ink]

Everyone with lupus symptoms are different. Some have rashes some don't. I don't have rashes but I have dark bruises that never go away. Lupus is confusing. Don't let it win or control your life. Live your life like lupus don't exist

[Author_ink]

I never had a butterfly rash. I was always tired. Very high inflammation levels

[Leslie-Waite]

Hi Maddien

Yes you certainly can have Lupus and not have the rash. I have had lupus for many years, badly at times without the rash. I come out with red patches on my arms and body at times even when the sun isn't shining but I've never had the normal lupus rash on my face. Lupus affects everyone differently, so ignore those people and refer them to your doctor!

[quirkytizzy in reply to Leslie-Waite]

This is what happened to me. I had a rash on my arms and chest and neck, even my thighs, but NEVER the classic butterfly rash across the face. It's really up to the whims of lupus where it puts your rash and that could be anywhere.

[Tripitaka]

Hi, I have recently been diagnosed with SLE and I do not have any rash, perhaps a general reddening of the face at times like a hot face, but no distinguishable rash (of which I am grateful). All the very best for your health X

TT

[maddien]

Thank you all for your replies. very grateful. it has made me understand it more. the aches and pains. unexplained mouth ulcers and headaches and fevers. night sweats.extreme fatigue. anaemia. poor kidney function.slight rash on arms and chest from time to time. breathlessness. dry eyes. can one have all these symptoms from one illness. i cnt understand some doctors wanting to put off referring for over two years. i already have synovitis of the spine which only showed on an mri scan. sorry for the rant but i have learnt more in one day from you guys then seeing my gp for upto five years

[maddien]

Also bruise very easily. very dark and take ages to go

[Freckle1000 in reply to maddien]

Hello.

Don't wait for a long term referral. I'm posting from Australia - so I don't know how you'd do this quickly - Go to a hospital ?

But please get yourself to a Nephrologist ASAP. You cant risk the potential of losing some kidney function to possible SLE while waiting for a diagnosis.

Sorry to sound alarmist, but I think given the list of things going wrong you need to get help now & protect your kidneys.

A Better safe than sorry approach.

Nephrologists 'here' are just as good as Rheumatologists at diagnosing and looking after Lupus. (Sometimes better)

Don't muck about.

Get help now.

[maddien in reply to Freckle1000]

One kidney is ok and one is functioning at 52 and should be greater than 90. it has actually dropped from 57 in less than a year. would you think this is cause for concern. many thanks for your reply

Mel

[1sam in reply to maddien]

I totally agree with Freckle1000. You need a nephrologist to correct your kidney function, your problems could be due to lupus or not but organ involvement takes priority.

I was diagnosed with systemic lupus SLE and Lupus Nephritis, both the nephro and rheumatologist decided my treatment because the same medication that helps to reduce joints inflammation helps the kidneys but some others would hurt it.

I hope you find the right treatment soon, you deserve good health

[Freckle1000 in reply to maddien]

Yes !

I think if you're bruising is getting worse right now then a re -visit to your nephrologist is especially worth a try.

Has anybody offered an explanation as to why one kidney isn't doing so well ? You don't want to risk it going any lower than it already is.

With appropriate treatment you could get the eGFR up again on that dodgy kidney.

[Freckle1000 in reply to maddien]

Don't stop actively seeking help until your kidney problems are resolved. If a disease diagnosis is required then get all the Doctors to multiple tests through ASAP.

[Cal66 in reply to maddien]

Hi

I have had SLE for 28 years, diagnosed for 23 years. Before my diagnosis I had all the same symptoms as you, even now when my kidneys start, it usually means that I am going to have a serious flair.

If your GP says you are going to have a long wait to see a consultant, if you can afford it tell him that you will go private in order to be seen quickly, that's what I did., don't worry about paying for the treatment, every time I have had had to pay to see a consultant I was given treatment on the NHS. Don't hang around waiting to get worse, you need to be seen fairly urgent, because with lupus you don't know what part of your body it's going to attack next.

Keep pestering your GP for referrals & good luck.

[milkwoman]

I have lupus (SLE) and Sjogrens and never have had rashes. I had all the other symptoms though (fatigue, muscle weakness, joint pain, dry eyes and mouth, sun sensitivity and I seemed to be sick all the time. It took 2.5 years to get diagnosed as doctors thought it was due to other things. Even when I had a positive ANA and was sent to a rheumatologist, he was certain it wouldn't be lupus. Blood tests showed otherwise and he was astounded. I was diagnosed that day and started on Plaquenil.

[chrisj]

No rashes here to speak of either....bits of itching that I would say was more about side effects from pills, nothing major

Fatigue and sweats and hair loss were some of my main symptoms with mouth ulcers, dryness affecting nose, mouth, voice box...often came down with flu and laryngitis before diagnosis in 2005. Plaquenils been a life saver. Hope you get some relief very soon, wish you well x

[Paul_Howard Partner LUPUS UK]

Hi maddien ,

As many already helpfully said, not everybody has skin involvement with lupus. Skin involvement is common in lupus, with 60-70% of people with lupus reporting some skin problem, but not all people will have this.

If you want more information about lupus and the skin, you can download and read our booklet here - lupusuk.org.uk/wp-content/u...

[beccaboom]

Hey there,

I do not have a classic butterfly rash, but had small unexplained pimple like sores (discoid) that would appear over and over in the same place. This went on for years..then sores on my scalp, in my nose...I went to many doctors and e.r's, and even with a high white count, no one thought to do a lupus test.

It took one good doctor to discover in one test what was wrong. I have started meds for lupus, anxiety and depression and feel somewhat better after two weeks. I mainly have noticed my skin clearing up, which was really distressing me.

All of the other things you listed I experience as well...tired, kidney and gall bladder problems, high white cell count, protein in urine, sweats that are awful, itchy skin, and bruising easily.

Talk to people in your city, and find someone that has lupus, and get a recommendation for a good doctor. My main doctor now is also versed in lupus, as well as the specialist, so that way I do not always have to pay expensive co-pays.

Good luck, hold your head high...

[Puska]

Lupus is a crazy disease that expresses itself differently in everyone. My niece has Lupus as do I. We have some common symptoms and some that are poles apart. I have rashes - discoid and the malar rash but that only comes on after sun exposure. Have had discoid for a very long time. Niece has none of these. I also have APS and she has tested negative. I have sicca symptoms, she doesn't. We both share total fatigue, and joint pain. She gets mouth ulcers and I don't. She has cerebral issues - Bell's palsy. I don't except from the APS stuff. She gets pericarditis. I don't. But we both have the same illness.

[maddien]

Hi everyone. just an update. had my appt today for lots of bloods etc to send with my rheumatology referral. nurse stated i have protein in my urine so has sent it to the lab for further testing. has anyone else hsd this problem with lupus and a low kidney function of 52

Many thanks guys

[pascalelupus]

Yes of course, I' m with SLE but no rash at all. The one with rash is discoid lupus erythematosus.