Lupus

[Viv45]

Hi

I am being tested for lupus .

Posted last week about an extremely itch rash on my cheek .

Three visits to a GP ( different) in same practice.

First GP dismissed it , second said just a patch of eczema ( I have some hand eczema) and will clear up . I had initially thought I had taken a reaction to gel nails . GP dismissed this but to be safe I removed the nails , rash persistent though some days worse than others . She mentioned lupus but didn’t think the rash was wide enough .

Third GP ( as no amount of antihistamines helped ) or cream agreed he would arrange bloods to look for lupus as he thinks the rash is light sensitive ( I know do too)

No other symptoms but I have fibromyalgia so I have muscular pains rather than joint . Have been tired but put that down to post menopause.

Dr just said my skin was exceptionally dry so could be something else .

I have never known itch so bad .

I am stressed as I love the sun and going away on a very special holiday in June , I love to get my hair done , my eyebrows etc . I just like to be nice .

I don’t go out much I am a home person but work hard for my holidays etc .

I am reading treatment may mean losing hair , no more sun and I can’t think of anything more cruel as both bring me so much mental health benefits.

I do think I have it and terrified of the outcome. Bloods taken today .

I am 55 and considered late onset if I have it .

Anyone ?

I was diagnosed with Lupus five years ago and I'm not on any medication as it isn't "that" bad atm (but I reacted badly to the first two types of lupus medication, so not bad enough for the third tier). I do have the odd flare up but my Fibro is my main, dominant, problem. I can tell if it's a lupus flare instead of a fibro one as it just targets slightly different bits of my body iyswim.

If you are itchy then I found Fexofenadine antihistamine helps the most during the day, and the old fashioned Hydroxyzine Hydrochloride at night as it causes drowsiness which knocks you out so you can actually sleep. Anything worse and I get a short course of steroids.

EDIT - You can go out in the sun but its SPF50, long sleeves and a big floppy hat.

Thanks Pixiedust 1234. Hope you’re doing ok .

unfortunately Fenofexadine does not help as I am immune to it after years of eczema . I am also allergic to hydrocortisone. It’s so difficult as I am reliant on moisturiser only to ease it.

I normally wear a big hat and sunbathe early or late so used to being careful but I tan lovely and brown so I will miss that plus the sun has so many benefits as it puts my eczema into remission for a good while , strengthening nails and hair too .

Also you read so much on disease of the northern hemisphere and here is something that refuses sun it’s very cruel . I am personally very low about it all but will need to face my very pleasure gone .

Thank you and I wish you well going forward 🙏

The steroids are tablets - prednisone? rather than steroid ointment so don't know if the ingredient makeup is different enough but that would really suck if you couldn't take it.

Because you have to stay covered up you need a decent Vitamin D (3,000 to 4,000 iu) with added Vitamin K for better absorption to help protect your bones.

As for lotions... I have tried plenty. Some prescribed, some otc. You just have to keep experimenting to see what your skin likes. My preferred one for a skin flare up is Childs Farm baby moisturiser from the supermarket/chemist as it isn't greasy and absorbs quickly whilst being very soothing.

Lupus is similar to Fibro as in not just the symptoms but that different people experience different symptoms of the condition, although stress can make both worse. No two lupus sufferers are the same just as no two fibro sufferers are. Maybe you will be similar to me and have a milder form that only needs treating during a flare rather than all the time, I'll have my fingers crossed for you 🍀

It is possible to have lupus on just your skin without the more serious SLE. I have both subacute cutaneous lupus and discoid lupus. The discoid lupus was diagnosed from a skin biopsy. I have steroid lotion for scalp flare ups, and steroid cream for my skin, and take hydroxychloroquine tablets. Once everything was under control, flare ups are now few and far between so I rarely use the steroid lotion/cream, maybe once a year, but am on hydroxychloroquine permanently. My only hair loss was small patches from lupus on my scalp before we realised what it was. I do stay in the shade though, and always wear a hat as my skin has lost pigment where the lupus was. Only 5% of people with these types of skin lupus go on to develop SLE

Thanks sixtiesbaby88 you have explained well and made me feel better.

I will try the child’s farm and see what the doctors suggest but having this information helps .

Fortunately and ( I know that can change ) I only have the rash this far and my fibromyalgia is quite quiet the now so hopefully it stays mild for now as the skin is enough to deal with . Joints for me are rarely painful and I walk daily .

I had a drug induced solar rash 19 years ago and from then on used Boots soltan sensitive with a prickly head and photosensitive element so I will use this and up the factor as currently use 35 . This episode of my life made me very cautious so it’s a dress rehearsal experience for this to another level . I never let the sun on my face on holiday I always have a big hat on and avoid mid day etc . I will just need to totally shade and up the vitamins.

I should get my results next week but I have no doubt it’s lupus

@Viv45
just found your thread and hope you have adapted to your test result whatever it turned out to be. Is it something you have to take medication for? I’m always scared of side effects.

Im 58 and think I might have this skin lupus, Ive had a really itchy atch on one cheek and round the eye for about a week. think I’ve had this once before. I’m photo sensitive anyway and have to use allergy sunscreen, I’ve also recently been having a thick feeling in my skin on fingers, thick ridged nails that split, and breathlessness. I don’t have arthritis though.

can I ask any more about your symptoms and how long you had the rash for ?

Hi Thighdentitycrisis

I only had the symptoms since Jan / Feb time and had put it down to an allergy .

It seems to be getting worse and certainly induced by sun and light .

I have no joint pain , I do get muscle aches but I have fibromyalgia.

Also since Christmas I have been exceptionally tired and when I go to bed I am out cold and rarely awaken .

Prior to this I was a terrible insomniac I think due to menopause. So this was a marked physical sign .

The doctor mentioned polymorphic light disorder which I have had 19 years ago but this was due to a medication. Currently I am not on any medication so it can’t be this albeit polymorphic can be on its own .

The doctor ordered 7 lots of blood ( sorry all applicable to autoimmune not sure of all names ) but came back negative.

However, everything I read refers to this result as very common so to be honest they seem to investigate this disease a bit back to front . It should be visually first .

The first doctor I saw dismissed the malar rash as not wide enough but I know now it varies. Mine is across one cheek and nose .

I am in a dark place re this as the medication is horrendous no way I can take take it ( I have never tolerated medication) so I will have to loose my life to this . I am so frightened re my eye sight as the meds will attack it .

Re nails weirdly they are not growing and crumbling and thin and prior to this in good shape .

Was also planning on retiring to Spain ( have a European passport) so this is now unlikely.

It’s a waiting game and now back to the GP as I am 100 per cent this is lupus and a disease sent by the devil . I like sun , garden etc and this is just the worst .

Many illness you can have hope to enjoy these things when you get “ better “ but there is no better with this .

Please visit your GP but the road to diagnosis is long and I would say you likely don’t have it .

Hi seems my blood work is negative for lupus . I got a second opinion too .

I questioned why the fact that mine seems to be skin the bloods may not pick it up .

Dismissed as the tests were lupus specific .

I have a course of steroids to calm this issue I have just now and reluctantly accepted as I have been so miserable.

I will be referred too to dermatology but this will be a while .

No hair loss as it stands that I can see even subtle, no ulcers or sores no joint pain . They are looking for this , I am aware of this as I have fibromyalgia and I was asked these questions when I saw a rheumatologist about this .

So I will see what’s next . Just wondered if Pixiedust1234 or anyone was dismissed with bloods being negative as I read this is common ?

Despite two / three opinions I feel a bit not convinced ..