lupus profounds

[AlyaAlkaly]

hello , its take long time to know my daughter 11 years old she have lupus profound in her face and her head and she lose her hair in someareain the head please if any one knows more information about this disease let me know

[Montysmum1]

Hello Alya

I was diagnosed with Profundus around 15 years ago. I have to wear a sun block or at the least factor 30 on my skin. I also take Hydroxychloroquine daily as prescribed by a Dermatologist .

I did lose tissue at the top of my arms and ended up getting plastic surgery to fix it. It is very manageable you just have to keep an eye on your skin and report and new rashes or red areas straight away before they develop too much and cause damage...

Hope this helps

Montysmum

[AlyaAlkaly in reply to Montysmum1]

my daughter she is only 11 years old and im afraid to give her hydroxychloroquine , did you feel any side affects from the madicene?

[Dustydander in reply to AlyaAlkaly]

I've been on hydroxychloquine for 4 years. No side effects. I need to get my eyes checked yearly but that's for a rare side effect. ( Retinal damage)

[Montysmum1 in reply to AlyaAlkaly]

I felt very sick to begin with but after I spoke with a pharmacist I got to try different brand types of Hydroxychloroquine until I found one that I did not feel so queasy taking. I also get regular blood and eye tests done.

[AlyaAlkaly]

thank you so much for replying 🙏🏻🙏🏻

[weathervane]

My son who is now 28 was diagnosed with lupus profundus a couple of years ago . He lost tissue round his shoulder which has caused pain and weakness. He was treated with hydoxy and methotrexate, this appears to have prevented further progression for now and he was told to come off these drugs . He still has muscle pain and fatigue , he has to keep a keen eye on his skin . Waiting for a review, was under joint care of rheumatology and dermatology