Discoid Lupus

[CcyrpesS]

Does anyone haveDiscoid Lupus? It's what I have, I've never talked with anyone else with it.

[Wendy39]

Hello. Welcome to our lovely group. I'm glad you found us. I think a lot of people here have DLE along with their SLE or on its own. Do you suffer from being photosensitive too? Are you newly diagnosed? Are you on any medication? Do you have a good Dermatologist? Not sure if you are aware that Lupus UK have some great info on their website. Also this site has a search facility, where you can look for symptoms and medication etc, that may be useful. I have SLE but have had a lot of skin issues with it - photosensitivity, sores on scalp, hair thinning and hair loss, crusty sores on my ears, generally very dry skin, including cracked and bleeding hands and feet at times, weak nails, the malar rash. I've probably forgotten something there. I hope a lot more people reply to you and you get a lot out of this site. I know I have. Best wishes. Wendy

[CcyrpesS in reply to Wendy39]

Thanks for responding Wendy!

I am very sensitive to the sun. I get a rash (bumps, no malar rash) on my chest. I had some hair thinning, but I started wearing hats every time I go outside (and a physical sunscreen), and it stopped. I still have scabs in my ears, at my hairline, and sometimes in my nose. I get scab like things on my forhead and cheeks next to my nose, but not sure if these are related. I use a steroid ointment for the rash on my chest, but thats it. I havent had any tests for sle, but also don't have really noticeable symptoms. My skin has been extremely dry, seems to get worse every year. The only other thing is my hips. They get seem to get painful easily. It stops after a day or so, but that's it. I was diagnosed with Discoid Lupus 2 years ago. I have not found a good dermatologist.

Do you take any medication?

I was diagnosed with hypothyroidism last year, so levothyroxine is all I take. Do you have flares? If so, what are they like for you? From what I read, one who has a flare definitely knows it. I don't know if random sore hips are a flare or not, simply because it isn't as intense as others describe them to be. Thank you for being so interested in helping me out with this, it really means alot! It's very interesting to hear someone else's experiences, and to see the similarities.

[Cas70 in reply to CcyrpesS]

Hello - I was diagnosed with Discoid Lupus 2 years ago. I take Hydroxychloroquine 200mg daily. I am surprised they did not discuss this with you as it helped me. I have Sjogrens also. With Discoid, apart from drinking as much fluid as possible, I cover my skin in Nivea (Diprobase was too heavy) and have cut right back on sugar. I have found natural remedies which really help too - if you are interested. My hair has thinned and I have a well hidden bald patch! Great stuff eh? Lupus the gift that keeps on giving!

[CcyrpesS in reply to Cas70]

Since taking Hydroxychloroquine, do you get rashes from the sun? Do you have any side effects?

I do have to say, this website has been very helpful, and you all here are great! Thanks for all the positivity!

[Cas70 in reply to CcyrpesS]

Obviously , Lupus affects us all differently - I have the butterfly mark and my skin has all kinds of marks, dry patches and warty like blobs on it now. It has taken me 2 years to come to terms with it and cover what I need to. Make up is a godsend, and I am grateful I got this in the later part of my life. I feel sorry for the young folk afflicted. Since taking Hydroxychloroquine I have regained a lot of energy and am not too sensitive in the sun. The only side effect was diarrhoea! I visited a Medicinal Herbalist who solved that immediately. Good luck

[CcyrpesS in reply to Cas70]

I agree about the make up!

I have a question for you, since taking your medication, has your rashes/scabs in ears on face etc. continued, or cleared up?

[Cas70 in reply to CcyrpesS]

It has improved. Each one of us reacts differently to medications. I have learned thru this illness that it is a lonely path finding remedies that work for me. I couldn’t get on with Diprobase for my skin and switched finally to Nivea - it has really helped. As does lots of water! There are great tips to be found on this website. Good luck x

[Wendy39 in reply to CcyrpesS]

Hello again

I was diagnosed nearly 5 years ago now. It sounds like we have similar skin issues. I get sore and crusting on my ears - if exposed to the sun, sores in and around my nose, I do get the malar rash, my hands and feet have blistered. I had eczema as a child and so am used to moisturising. I now use Aveeno products, as they seem to work best for me. To be honest, unless my lupus is under control, I always have skin issues, no matter what. But when I am not flaring and I have a good spell, my skin is a lot more manageable.

I too was told last April, that I am more photo-sensitive than I realised and that I should wear a hat every time I go outside. And I have been good 95% of the time, summer and winter. The red, angry, weepy rash at the nape of my neck is getting better - but whether this is due to the hats or the medication it is hard to tell for sure.

Unfortunately I have a lot of other symptoms, including hip pain, but headaches of all kinds, facial pains and neck pains, pains in my ears, tremors in my hands, titubation tremors in my head, soft tissue issues like tendontitis and bursitis etc etc etc. I take hydroxychloroquine, MMF, Mepacrine, antihistamine x 2 and now amitripyline and ranitidine too.

But you must remember, that although lots of us have symptoms in common, we have differences too. None of us are exactly the same. And our lupus journey takes us in different directions. It's just nice to be here and speak to people that understand. It helps a lot.

Have you had discoid lupus long? Have you joined a local support group so that you can meet others face to face?

If you look at my posts I have shared some of my photo sensitivity tips.

Best wishes

Wendy x

[CcyrpesS in reply to Wendy39]

I was diagnosed almost 3 years ago, but had the rash for about a year before. I wanted to use natural remedies to get rid of it, but that didn't happen. Before I got the rash, I was working out 2 hours everyday, outside (running, strength training ). I wasn't eating as much as I should have been. I was a regular wine drinker. The rash happened after sunbathing during the summer, which I never ever do anymore. I just wonder if I caused this.

My grandmother had lupus when she was in her 40s. They gave her chemo, and she was never bothered with it anymore. She did have arthritis, and eventually gout. So, its genetic. But could it have been avoided?

Can it be undone?

We're you spending a lot of time outside when yours came along?

[Wendy39 in reply to CcyrpesS]

Hello again.

I think we all loads of questions that in reality may never be answered.

From what I know about lupus, if you have a family history of rheumatoid arthritis or lupus, or other similar auto-immune disease in the family, then you may have the genetic pre-disposition to it.

However, you could have this genetic pre-disposition and never actually be ill or diagnosed with anything. However, others than have a "trigger" which then starts the auto-immune reaction and illness in them.

For me, I have a history of eczema, asthma and migraine, probably inherited from my dad's side of the family and then my maternal grandmother had RA. I think my lupus was really kicked off by the birth of my 3rd daughter. I had 3 children close together, within 4 years. Hormones is a recognised trigger. So for teenage girls, or during your child bearing years.

But also stress is a known factor and I lost 3 close family members within 12 months. So another possibility for me. Plus I had an operation a few months before my diagnosis, so the UV light may have added to that big flare in 2013 that led to my diagnosis. So many possibilities. Maybe it was a combination of those things, 2013 was certainly a tough year for me.

I used to run 2 or 3 times a week, up until about 26 weeks of my third pregnancy, I'd run 3 half marahtins and 10Ks etc. So I considered myself fit and healthy for a woman in her 30s with 3 children.

I don't think you can blame working out and sunbathing. I did all those too. You seem to have inherited your genetic pre-disposition from your grandmother. Has anyone else in your family got an auto-immune illness?

I'm afraid that i do not believe at this time that it can be "undone". Some people have mild lupus for years and can lead relatively normal lives. I have heard of women going into remission at menopause. I have never heard of anyone having one course of "chemotherapy" and never suffering from lupus again. Is that what family have told you? Or did you know your grandmother? She may have still suffered from her lupus but it was more manageable for her?

I still spend time outdoors now. My children are now 14, 13 and 10 years old and we live by the coast and lots of beaches. I am careful with my protection. I wear jeans most of the time. Clothing that if you hold it up to the window, that the sun doesn't shine through. I wear rash vests / SPF 50+ tops from March until the end of September. I do not wear sandals every day, but rather alternate, to protect my feet. I wear a hat every day, straw or cap during the summer months and a bobble hat or beanie during the rest of the year. My beanie's are cotton and very light weight and easy to wear. So the only part of me really exposed is my face and my hands. I weat SPF 50+ on my face every day of the year. I have a lovely matt finish SPF50+ tinted cream for my face and a liquid to powder finish SPF50+ make up too. I carry an Ego Sun Sense SPF50+ cream roller in my handbag for my hands. When we go to the beach I either take an SPF 50+ umbrella to hold or we take our beach tent - SPF50+.

So for me, it's about balance. I want to lead as normal a life as possible for my sake and that of my families and I do not want to be shut inside all of the time. Life is for living. It's just that for us photosensitive people we have to take a little more care and planning than others. And we should never sunbathe, you are right.

I hope I have helped a little. Feel free to ask more questions. Happy to help. I know how it's all so difficult to deal with and how it changes things. But we do all understand here.

Best wishes

Wendy

[CcyrpesS in reply to Wendy39]

It was 30 years ago for my grandmother, they could have been experimenting with her. Or, it being 30 years ago, she could have simply confused things. Maybe she was misdiagnosed, who knows?

You sound a lot like me when I go to the beach!

Thanks for sharing your lotion brand, I like trying different ones. My favorite sunscreens so far have been Cera Ve (I'm in the US) and Australian Gold Botanical mineral sunscreen. Out of all I've tried over the last few years, those 2 have been really great. I like options though.

Thank you!

It's been very informative, I appreciate your time and info!

Best Wishes!

[Chanpreet_Walia LUPUS UK]

Hi CcyrpesS,

Welcome to the LUPUS UK HealthUnlocked Community. We have lovely, friendly members here who are always willing to help!

Below, I have included some information links which you may find useful:

Lupus and the skin booklet: lupusuk.org.uk/wp-content/u...

Coping with light-sensitivity: lupusuk.org.uk/coping-with-...

Coping with itchy rashes: lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best.

[CcyrpesS in reply to Chanpreet_Walia]

Thanks! That really was an interesting read!

[RachelD1972]

Hi, I was diagnosed with Discoid about 2 months ago. I also have Rheumatoid arthritis. My Rheumy has had to readjust my meds and I’m on 200mg hydroxychloroquine for the discoid, Azathioprine and Abatacept for the RA. I have a lesion on the end of my nose (of all places) and it also affects my scalp, chest and collar bone area. The meds do make you sun sensitive so be aware of that. My skin also seems very sensitive generally to skin care products so trial and error for me at the moment x

[CcyrpesS in reply to RachelD1972]

Has the Hydroxy chloroquine helped with the discoid lupus?

Have you tried any of the Cera Ve products? I've found their cleansers, lotions, and sun screen to be the best for my super finicky sensitive skin.

[RachelD1972]

Hi, it’s only been 4 weeks so probably too early to tell but my RA seems better. Hoping they’ve finally find the right combo for me. I’ve never heard of those products. I tend to use Clinique & Dermalogica and as on a budget buy the bare minimum & wait for offers to be on. A little also goes a long way. Aveeno & Childs Farm also work for me (I’m in the UK). My hairdresser describes my scalp as looking like I have cigarette burns on it and again I tend to buy salon products with the initial cost being higher but they last longer. As my skin is so temperamental I tend to stick with what I know works as I’m too nervous to upset it again! x