Lupus

[steph18toto]

Can you have lupus without a rash on your face

[chihiro]

Not an expert on the subject but from what I have read you can have lupus without a rash.

lupus.org.uk/what-is-lupus/...

On this page it says: As with all 'classical' features of the disease, this rash by no means occurs in all patients, in fact probably the minority of lupus patients develop butterfly rashes.

I'm sure that someone with more knowledge than me will come and along and confirm this (or not).

[Lupylass]

Absolutely you can have lupus without the rash.

Normally for diagnosis you meet the criteria of the American College of Rheumatology (4 of their criteria). But it's not cut and dried and needs the expert opinion of a rheumatologist.

It's important to note all your symptoms, past and present, any relevant family history too.

[sandwiches]

i have had lupus since 1999, but i never had a rash anywhere on my body. My doctor kept saying are you sure you haven't got a rash, i kept saying no. a rash isn't always necessary to have lupus.

[bam1993]

Most definitely!! The facial rash is called Discoid Lupus - and then there is Systemic Lupus (SLE) that affects the whole body!!

[sharon53]

I have had Lupus for about 12 years but have never had a rash on my face

[plummer36]

The butterfly rash is just one of the many symptoms of SLE, I do get rashes on other parts of my body sometimes and I,ve only ever had the facial rash once, and that's in about 8 years of being diagnosed. Hope this helps.

[EOLHPC]

I get various types of rash here & there all over my bod, inc my face. Some reactive due to sun or heat, others due to chemical, plant or insect toxins. Whatever. I'm 60 and until my diagnosis 2.5 yrs go, GP's & dermies told me these were all "normal" due to allergies and or dermatitis. Now rheumatology tells me they're mainly lupus related. Most of my rashes respond to treatment with topical steroids or strong topical antiboitics.

Having followed posts here about rashes for several years now, and done some research, my impression is that you're best to avoid generalising much about rashes & lupus patients because there is so much variation....loads of us don't get any rashes at all!

[ebril]

I have Lupus and have never had the rash on my face

[sezzie]

Yes you can. Everyone has different symptoms. I personally get the butterfly rash when I'm flaring, stressed, run down or if I get caught in the sun.

[kimc in reply to sezzie]

sezzie, I went across and see you have symptoms close to mine which lupus hits me for a year now during stressful time and menopause. the rash is on my face, back of my hands, arms, neck and scalft. I'm taking hydroxychloroquine 400mg per day. I'm just wondering how are you doing these days...are you get any better? as someone says if we're taking care good it can go to remission.

[sezzie in reply to kimc]

Hi kimc,

I'm not too bad at the moment, in fact I've just had the best 3 weeks "health wise" I've had in 2yrs which was greatly needed. I too take 400mg of hydroxy and daily prednisolone. I've heard about "remission" but yet to hear from anyone who has experienced it. Unfortunately due to the warm weather I've started to feel like poop again and getting rashes on my face and chest and awful dry skin but hey after 3 fairly good weeks who can complain. How are you feeling? X

[kimc in reply to sezzie]

HI sezzie,

Good to hear you're feeling better lately. Last week was very bad for me, I had been took only 200 mg hydroxy until last Friday, my rash gotten pretty bad and I guess Summer is here and flares are more present. I was very much stay inside on weekend rest and hope to get better. I feel better today, thanks for asking, but my stomach isn't feeling well when I take 400 mg, my chest and face seems getting better but back hands aren't so much, but the itch wasn't so bad. It seems I need to slow down on mental and physical, more relax it would help.

Now, why do you take prednisolone? when I first went to clinic for the rash, they gave me prednisone, are they the same things. Likes take high dose and slow down (I maybe spelled wrong). Heat also gives me a bad rash and hives too.

I'm new here, thanks for the site and you to share lupus experiences X

[sezzie in reply to kimc]

Hi kimc,

I'm sorry to hear that you've been struggling lately and I totally understand and sympathize with you. Sounds like you don't tolerate high doses of plaquenil, do you take a tummy protector something like omeprazole? This might help with stomach problems. When were you diagnosed? I was only diagnosed a year and a half ago and I'm still adjusting. With regards to the prednisolone most lupus sufferers are on a maintenance level and with me I was on a very high dose and every time I tried tapering off them I would flare so my rheumy decided to keep me on 2.5. You're right about suffering more in the summer months. Last summer I had a 4 month flare and was hospitalised which was awful as I have a family to care for. Do you have a local lupus support group near you? If not Paul the administrator might be able to help you with that. Also I see a councillor every 1-2wks purely to let off steam and vent my frustrations which has been a godsend. I hope you continue to feel a bit better and feel free to message me anytime.

sending you hugs, Sarah. X

[kimc in reply to sezzie]

Hi Sarah, how was your day? to answer your original question. Sun, artificial lights, heat, stress can give rash, itching on my hands and tired. When my hands feel like needles pinching on my hands then I need to slow down to rest and breathing. I think my body responds to the sun more than when I first diagnosis. I think I have to be careful, don't want sun cooks my organs and my nerve.

Good luck Sarah

[sezzie in reply to kimc]

Hi kimc,

sorry I've only just seen your post, my internets playing up. My day was ok, how about you? I agree with you and I too have become more sun sensitive as my lupus progresses. We need to let our bodies dictate what we can and can't do and abide by it, easier said than done though! Take care. X

[Karmin in reply to kimc]

I was diagnosed 2 yrs ago but have never had any kind of rash..how are you doing on Hydroxycloroquine ?? I was taking 400 mg a day also but had to stop it last week I was told it was demaging my retina on right eye..got prescribed Methosdraxate have to start on it this weekend..a little concerned about side effects.. but other than hair loss which is traumatic to me and being tired I really don't have many other symptoms. I been not feeling too good this week but for what I have read here must be because I stopped the med quickly..iam not sure now taking folic acid all week to start on Mtx.

Good luck to all of you.

[angela28]

Hi

Iv had Lupus for 4 years now and don't get a rash, lots of other things but no rash xx

[JanBad]

Same here, I have been diagnosed for 13 years and never had the facial rash, plenty of rashes on other parts of my body though. Luckily unless I am already in a flare I do not react to sun light, which is handy as my mother in law lives in the south of France and I have an open invitation to stay with her.

[tashi]

I was diagnosed with discoid lupus first, losing patches of hair on my head which will never grow back. Within months they found I had full systemic lupus but have never had a rash on face or elsewhere. Lupus is a pick and mix condition, we'll all get a different collection of symptoms and problems - which is why it can take a while to diagnose!

[adrian_holland]

I only get the rash when I am very stressed. I do however develop a rash on my arms, neck and legs the very second that the sun peeps over the horizon, this rash quickly develops into little conjoined blisters that eventually burst and unless I have anti-bacterial wipes to hand the liquid that oozes out seems to react with my skin which dries and cracks leaving me with the complexion of an alligator.

I also these past 15 years or so seem to have developed what can only be described as a strawberry (birth mark?) on one of my upper cheeks, close to my temple, this used to fade away in winter, unfortunately no longer, it just gets even more prominent in the summer, god knows what this is.

[kimc]

Hi Steph, I don't know for sure. When I got rash and itch, I went to doctor and found out I got lupus. But they say people may get lupus way before dianotis and don't even know because lupus is so mystery. I wish I know early so my system would not get so bad.

Good luck to you my dear

[steph18toto in reply to kimc]

Thankyou all I get very hot and sore feel like I'm sunburned

[Hidden]

hi I have been asking about my symptoms on the fibro site for a few weeks now but I think I will query Lupus with my doctor when i see her on Tuesday, i have had intermittent rashes on lower arms forehead and legs also have had very itchy legs but no rash visible, i do have RLS, bowel problems, headaches, loss of limb control, diverticulitis, a hiatus hernia causes bad heartburn, hot fever flashes, joint stiffness especially in the morning or after resting,Swelling/fluid around several joints wrist, hand, fingers, ankles, memory lapses, and cannot sleep due to pain even though i am completely shattered