DISCOID LUPUS

[glasgowgal]

Hi everyone

I'm new to this site and is looking for a bit of advice. i was diagnosed with discoid lupus 18 months ago after suffering with lesions on scalp,face and ears for many years being unexplained. im on various lotions and potions and hydroxychloroquine.

what i wanted to ask u guys is does DLE have some symtoms of SLE?? ive had migraines for a long time and also joint pain in my knees and what i can describe sore and heavy legs at night. when i told gp he said i just had skinny legs!!?? i really am just looking for any advice you guys have as i have no one to relate to. i attend dermatology but thats all and still am unsure of the ins and outs of discoid lupus.

[Jinny]

Hi Glasgogal,

I was diagnosed the DLElast august,,i too had nasty spots/lesions on my legs,thighs,arms and torso,,my upper back,chest ,neck and face sparred thank goodness!

I have also sufered joint pain formany years hips,shoulders,recently fingers,,any joint can flare and hurt,,seems to move around!I was told this is Fibromyalgia but i have since learn't to recognise the diference in Lupus joint pain and this!

I take Hydroxy too,,hey make sure your prescription is for Plaquenil and not Quinoric as this plays havoc with our stomachs and does not give as much relief with joint inflamation ,,i found Dermovate Ointment (not cream) very good with helping the spots to heal,,although i feel because i was let covered in spots for three years with no treatment,,i now have alot of scarring on inner,lower arms and legs!!

Migraines are common in people with lupus but i am luckey and don't get too many headaches,,i do suffer Chillblains in the winter months and told this is because of the bad circulation caused by Livedo reticularis,which quite a few lupies get also with DLE,,you will need good sun screen protection and you need to go back to your docs and demand to get an appointment with Rhuematologist!!You have every right to request this,,your doctor sounds very unsympathtic and will no very little about Lupus,,saying you have skinny legs is terrible!!

If you use Facebook,,i belong to a group there ,,we give eachother support and members have often said they have found out ways to help themselves better there than what doctors have done or them in years,,look us up,,We are called Lupus is real!!

You will receive lots of support there!

Hugs.x

[glasgowgal]

hi Jinny,

thank you very much for all the info, you have given me more advice than ive had in 18months!! just felt like that after diagnosis i was packed of with no info, this is first time ive been in contact with anyone with DLE and now know im not imagining symtoms!! i will defo go back to GP and see about referral to Rhuematologist, i find dermovate very helpful too and betnovate scalp application as i have constant flares on scalp.

have u tried bio oil for your scarring?? it minimises scarring over time, ive a few scars of face, mainly throught biopsies.

will defo look you up on facebook

thanks so much again jinny for all your help xxx

[Jinny]

Your very welcome hun.

Ihave used Bio oil and also Palmers thick body lotions are good,,the scarring i have alot of are from the healed spots/lesions/boils,,don't think they will ever go away said the dermy.

The two skin biopsys i had one on my forearm and the other at top of thigh are just white scars where the skin was removed then stitches put in,,they will always stay as scars!i am very surprised that you have had biopsys taken from your face!!This is terrible,,surely there are area's that they could have found a lesion on other than your face??

You will find you will be extra sensitive to the sun,,much more than SLE patients and will need a good factor 50 sun block,,and floorescent lighting also wii irritate your eyes!!When you see the Rhuematologist ask him for a pressure point test on the areas of your body you particulary ache in to rule out Fibromyalgia,,this condition ha alot of same symptoms as Lupus pain,,and most importantly get yourself some good pain medication,,less pain equals less fatigue i say,,nothing worse than constant pain for making us feel even more tired.x

[glasgowgal in reply to Jinny]

hey jinny

hope you are well, thought i would give you an update.... had appointment with dermatology yesterday and explained about my joints particularly my feet and legs, she said its unusual to have joint pain with discoid lupus!!?? is soooooo confused again!!! feel as though i am back to square 1!! she sent me off for xrays on feet and hands so gotta wait for results, so disappointed because last few days ive been in agony with legs, she also said my bloods came back with raised liver enzymes, but didnt explain just said wait for blood results this time and see. so heres hoping something comes up on xrays to explain why i have joints of a 90 year old lol xx

[sagajagads]

this condition ha alot of same symptoms as Lupus pain,,and most importantly get yourself some good pain medication,,less pain equals less fatigue i say,,nothing worse than constant pain for making us feel even more tired.

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[Mauricio91391]

hi i've had it for 5 years now since i was 40 and it's not bad especially since its not systemic i to suffer from the leg issue at night and aleve seams to help before bedtime other than that my life has been pretty normal no flare ups since it was diagnosed as you see from my picture i even sunbathe regularly but do avoid dairy if you have a cut or sore also the sun good luck it could always be worse

[Mauricio91391]

p.s i also recommend glucosamine and condroitin