Cutaneous Lupus

[Angel767]

Can anyone tell me if you have any physical symptoms with cutaneous lupus?

I was diagnosed with Lupus back in 1999. I had sores on my scalp, they biopsied them, came back Lupus. They put me on Plaquinel which helped, but recently was taken off of it sue to conflict of a heart medicine I have to take.

Now my back broke out in so many sores, and also are on the bottom of my feet. The Dermatologist biopsied them, yes it's Lupus.

She wants to put me on Methotrexate, but I'm not happy with that. I'm afraid of the side affects.

Anyone know of any new meds that help?

Is it necessary to take medicine to treat the Cutaneous Lupus? I put Clobetasole on the lesions.

[cakerbaker]

Hi Angel76 I had the same thing. I was diagnosed with lupus, then quickly developed these shallow sores on my body, thankfully not my face feet or hands. They were quite horrible, anyway I was put on azathioprine which worked wonders and they have disappeared. I did originally take 100mg but currently only 50 as I have some additional meds added in. Still keeps the patches away.

I've had no problems with azathioprine, but horrendous problems when they tried methotrexate although each of us is individual so will react differently also they need to take into account your heart meds.

It's very hard isn't it? These patches for me, along with the associated hair loss was the worst thing for me.

I hope you find a resolution. Take care

[Barbara17]

Hi Angel767. I have cutaneous lupus and my head is affected too. I find the best thing for my scalp is Dermovate scalp lotion. It is a clear liquid so can be used at any time. For my skin I use dermovate ointment (clobetasole). It can take a while to heal on your scalp and, yes, it is itchy. Make sure you always wear a hat to keep any sun off your head. I’m also on 12.5mg methotrexate injections. Some weeks I’m fine with it, other weeks it floors me! It really is trial and error as to what suits you.

[Krazykat26]

Hi Angel 🤗 gentle hug for you coz I know exactly how painful it is when sores break out on the soles of the feet. I have Cutaneous lupus and although the main emphasis is on my skin I also have physical symptoms such as fatigue, joint pain, bone aches etc.I take Hydroxychloroquine, Prednisolone and methotrexate. I've been taking methotrexate (MTX) since 2019. Firstly I took tablets and now I'm on injections..17.5mgs weekly. I use Dermol 500 lotion as a soap substitute and moisturiser as I can't use any soaps. I also use Dermovate ointment on any sores. Methotrexate has been a game changer for me..my lupus is better controlled and it's helped immensely with my energy levels. Only taking it once a week is a bonus too!

If u decide to try it your doctor should also prescribe folic acid to take every day EXCEPT the day that you take the MTX. You will take MTX on one day of the week only so my advice is to choose a day when you can rest if you need to. I take mine on a Sunday.

It may be that you're flaring after stopping the Plaquenil but it does sound like you need some form of medication in order to get some control over your current symptoms.

I did have a couple of side effects when I first started it..a bit of blurred vision in my left eye..some numbness in my left hand and a mild headache but this was only on the first time I took it and that was in tablet form. There are some folk that have gastric problems with the tablets so injection is more suitable. I didn't have any gastric problems on the tablets but switched to injection to improve uptake of the drug.

If you Google DermnetNZ and look up SCLE you'll find lots of pictures of cutaneous Lupus. It was through that site that I discovered that MTX was the go to treatment. I was on another immunosuppressant at the time that wasn't agreeing with me so I suggested changing to MTX and my dermatologist agreed.

I hope this helps you somewhat to making a decision one way or the other. 💜🦋Xx

[KnitSewPurl]

Hi Angel,

I found Synalar useful I used to break out in alot of lesion spots on my scalp,leg , body , feet arms basically all over and my face as well when I am extremely ill.

I am currently off Hydroxychoroquine. As they felt I "don't need it "plus eye consultant wanted to see if the Hydroxychoroquine is causing the problem or whether if it is my macular.

I have attached an article hopefully it would be of some use for you. It basically outlines those who are suitable taking this drug . This drug is current being used off licence. So you will probably need to find a consultant who is willing to prescribe you it.

Hope all goes well for you.

panmerseyapc.nhs.uk/media/2...