new to site

new to site

hi all,

I was diagnosed with discoid lupus ten years ago.

Since i didnt look ill, it was/is difficult to speak to anyone....plus told by doctors its only a skin rash. .. so i felt like i was moaning or it must be in my head.

I am interested in finding out if anyone else with discoid lupus suffers joint pain, mood swings(feeling low), extreme tiredness?

i have been taking mepicrine for the last year, seems to be helping skin. Least the crap cloudy summer kept the uv light at bay!!!!!

10 Replies

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  • Hi there, I was originally diagnosed with SLE which I was later informed that I did not have SLE but DLE. I suffer all the complaints you have listed, so you are not alone, but over the last 16 years they have diagnosed me with ME/CFS and Fibromyalgia. You need to get back in touch with your Drs and suggest they rule out everything else as you might find that you could have the same. I am online here every day so if you need to chat just message me. I know it is not easy, if you look on FB you will see a group that is called "but you dont look ill".

  • you have really been through the mill! I did go a year ago for a thorough check up - explained the pains in my legs etc - cannot say they were very helpful. Its maddening because, its when your not having a flare up, that you have pre-arranged Drs appoint, and i find it difficult to explain etc. Thank you for your message, im on faceback so i will find that site.

  • Hi there, i am also new, i got dianosed with SLE 2007, then got diagnose with SCLE which is similar to the DLE, Mepicrine is wicked stuff, keeps the rash at bay, ive run out atm so rash is back

  • IM glad i finally got mepicrine , it keeps the inflamed red lumps at bay!! I have been really assertive with doctors when it comes to getting that medicine......I know, as soon as run out especially nearer spring - it comes back.

  • Wish the mepacrine worked for me, over 16 years the rash has been spreading and they have not found anything that works, so the last resort for me is Thalidomide. I am commonly referred to at the hospital as the awkward patient as nothing seems to work for me. I think I have tried about 26 different treatments and no joy.....

  • Mepacrine has been the only treatment that has worked ....havn`t tried thalidomide..yet.

    hospital put me on a light treatment course, like a sunbed but standing up in it...weird i thot, but they said the machine didnt give out dangerous UV light,...hmmm. Stopped that... it really didnt help! I have also found the steriod creams can inflame the lupus more...but doctors disagreed.......I hope you do find something that helps you,..gets a little bit depressing though at times tho........

  • Hi, I was diagnosed with DLE just over a year ago and it took doctors over a year to diagnose which has left me with really bad scarring on my face (classic butterfly rash). I have tried different treatments, the last one being plaquenil but I took a bad allergic reaction. I have read a lot of you people are on Mepicrine so might ask doctor when go for check up. I dont just have problems with my skin, but my hair fell out in patches which doctors said it wouldnt grow back, it did, get what i can only describe as waves of tiredness, aches in my joints and I have more recently began having problems at dentist with injections not working which I dont know if its related to the DLE, I have sores in my nostrils etc etc.. Its got to the stage where I go for my checkups and tell them all this and they're not interested. Docs were supposed to send me an appointment for hospital to get makeup specially done for my skin tone and they forgot to arrange this. I feel like what is the point in going to these checkups... :o(

  • Hi, I have rashes on my face, more circular angry red marks on my cheeks, mouth edges, chin.....steriod cream usage has also damaged the skin. I did have really bad patches on my scalp, no hairloss, but the mepicrine literaly stopped that ...............plus i am never outdoors for any length of time without a hat! My hands get affected in summer - usually slathered in suncream. I know what you mean, i sit in doctors and try to explain (not effectively) they hum and hey, give you a prescription and thats it till the next visit. I tried another malarial , very bad reaction after 10 days, i can barely pronounce it let alone spell it - hydro...quinine ?. I have had many upsets with make up and trying to cover it up, plus expense. I once tried a make up session ..it was awful, they caked on the make up and suggested pantomine/stage makeup............i left. It can definately knock your confidence ,.....I would definately ask your doc about mepicrine, the tablet has a really bitter taste, Dr said it can tinge your skin orange - that hasnt happened to me, i feel fine on tablets. Good luck, and good to hear from you.

  • I was diagnosed with discoid in august,my skin lmost of my body except head chest and neck and back covered in spots rashes,i take Quinoric tablets and in two and a half months my skin is improvng at last,,i also take fexofenadine hydrocloride in the summer,it also helped.Today i was diagnosed with fybromyalia,so at least i know i dont imagine extreme muscle pain,for years and years was told nowt wrong with me a big ha ha,And as for make up,,asda do one they call magic mineral makeup its by Jerome alexander,you find it by all the magic gadgets,,eg stuff like carpets,,hair products stuff that wilko promote etc,,its very good and covers my rashes,,well rashes,,mine were proper spotty.I do hope some of this may help,,i am still coming to terms with lupus,,i hate it all.Good luck to you.x

  • p.s the profile pic is not me ha ha,,i trying to change this.

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