Lupus Support Group

Hi Anna,
I only have a second because my toddler is outside but I wanted to let you know that I completely UNDERSTAND living with people staring at you. After many years of soul searching and coming to terms with my experiences, I have learned to wear my scars (MANY of them) as a badge of courage. I have a huge 6 inch scar across the front of my neck from cancer....I also have a 9 inch scar down the front of my chest from open heart surgery. I am 39 and this all happened between the ages of 25 to 31. I have several large scars on my back as well from cancer surgeries and a hole type scar under my rib cage from the chest tube. People STARE at me all the time. I have even had people talk to my scars instead of my face!!! I doesnt phaze me anymore and I do nothing to cover them up because these scars have made me who I am today. A warrior and a survivor.....And, talk about looking like you have gotten beaten up?? I am on blood thinners and have very poor balance so I have huge bruises all over my arms and legs. It may take you time to get to this same place, but do try.....It is not healthy to become a hermit because you are afraid people will stare at you. Your missing out on so much and you shouldnt allow others to have that power over you......Im not at all trying to compare who's scars are worse....Im only telling you this because I understand feeling like a freak. I always call myself frankenstein from all the mutilation I have endured.....

As for your DL.....Have you seen a rheumy because I think there are people who have this that benefit from Plaquenil (which helps their lesions). You may want to ask about a trial of this drug. It may help you.

There is also a really good foundation called Demablend that covers scars and discoloration VERY well. Please let me know if I can help you in any way....Im here for u.
gotta run..
Melissa

Well, you are not alone; we've been in your place. Whether it's because of scarring or a rash or bruises or weight, we all end up not feeling like we are the person we started as. And the change in self-image is just so hard. Even when people AREN'T staring at me, I feel like they are. Look at the singer, Seal. He has discoid lupus, but for years people whispered that he had tribal mutilations and other garbage like that. (He was kind enough to perform at the Orange Ball to raise money for lupus last year, BTW.) Now he is famous and everyone accepts those marks as part of him. But I bet he had times where he felt the way you do too.

Now, as for your treatment, you need to press your doctor for more aggressive treatment or find a different doctor. I know the UK medical system is complicated, but this doc doesn't seem to be helping you. There are numerous meds available although I was under the impression that gold was BAD for lupus patients. I know that some docs have had great success with the old drug thalidomide for treatment of Discoid, but it's only given to women who will agree not to become pregnant since the side effects are terrible for a fetus. What is your doctor giving you?

You mentioned that you have to take your tabs all year round; it sounds like for some reason you seem to think that you shouldn't have to during the winter? But the rashes are triggered by sunlight which is around all year round, just not as much during the winter. And if your rash is not under control, it doesn't surprise me tha tyou need to take whatever your meds are year round. Unfortunately, once a flare is triggered, it doesn't stop due to changes in the season.

Are you seeing a rheumy or a dermatologist? Because that might change the way your disease is treated.

In addition to Dermablend, there is also a company www.nicolepaxon.com that sells make-up designed to cover lupus rashes and contains sunscreen. It's just another option for coverage. Dermablend comes in a VERY large variety of colors and has been around the longest. It's designed to be waterproof etc.

HOpe this helps.

Travcy

Anna,

I can totally relate. I have SLE but went through 5 years of discoid rashes on my face, neck, back and arms. It was 5 of the hardest years of my life. Talk about depression! I mean, it's no picnic when you're in pain, but when it's out there for the world to see and in the form of a disfiguring rash, well, sometimes that's almost too much to bear. They didn't have dermablend or the othe good make-ups they have now so you're quite lucky that you have those options.

You didn't mention which medication you were on, but the plaquenil that Melissa mentioned is an excellent medication for combatting all kinds of lupus symptoms, including rashes. Please see if you can have your doctor prescribe it for you. There is hope - my rash did go away leaving me little scars which are hardly noticeable.

Good luck and keep the faith.

Dale

Ok, SEAL is my absolute favorite artist in the entire world (oops, besides Tory Amos) and I actually thought those scars on his face WERE from a tribe!!!!! Im not much of a star person so I heard it and just believed it. I had no idea it was discoid lupus. Off the subject but my best memories in my life are riding and galloping my horse through the hills with the wind blowing in my face, listening to SEAL in my CD player...I can smell it right now.....What a wonderful memory...
Hugs to all,
Meliss

Hi thanks its nice to know that other people are going through the same.

I am taking plaquenil for my lupus but i does not seem to do much good. Thats why i am taking 600mg now instead of 400mg.

The reason i said about taking my tablets all year round is that my doctor said to me that lots of people in the uk do not need to take them during winter months as the uv light is not as strong. But obviously with me thats not the case.

i am seeing a dermatologist. what is rheumy?

has anyone every had to take gold tablets?

you aren't alone anymore, you have a whole group here who understand. i get the really bad rash on my face and it stands out so much that ppl stare at me and wonder what disease i have. i have felt like putting a bag over my head to hide in or just stay inside to hide. i guess at one time or another we have all been there!

just remember you are not alone anymore, you have us!

Hi, I also know how the discoid lupus is..it's ugly. I was diagnosed last year, had awful lessions on my face. On here you are not alone, it is a great place with so much support and advice. I love it here.

Oh and Rheumy is short for Rheumatologist (can't spell..LOL)

Hope you get to feeling better.

hugs,
paige

Hi Anna,
You NEED to see a rheumatologist....If you are in London, see if you can get an appointment with one of the dr.s at the St. Thomas Hospital (I think thats the name of it). They have an EXCELLENT rheumatology department. Your dermatologist is not treating you with the proper medications. There are MANY other treatments available for you that dermatologists just arent aware of. Rheumatologists specialize in auto-immune disease's like lupus (discoid too), rheumatoid arthritis, Mixed connective tissue disease, etc. They also do specialized blood work to see what is going on with your immune system. You should demand a referral to a rheumatologist since you are not getting better from the treatments they are giving you. There is hope for you to get better, honey...You just need to see the right doctors. I have known several women with DL who have completely gone into remission, the scars/lesions gone away, after being on the proper medications....A rheumatologist can add meds to the plaquenil, give you a prednisone pack, etc. to calm down your immune system. It is over acting which is why you are having such a hard time right now. See what you can do about getting to a rheumatologist ASAP. This is an auto immune disease and it needs to be treated by someone who specializes in them.
Hugs
Melissa

Oh, I totally understand. Have you thought about seeking help for the depression? I was diagnosed with MDD and GAD around the time I was diagnosed with SLE. I've been on meds and I go to a therapist once a week and it was done VOLUMES for my depression. I feel so good now. In my case, I may have had some depression attributed to the SLE but it was largely overshadowed by the MDD. Please consider it. I found out so much about myself, it is truly unreal.

Take care.