Registered: 1490930187 Posts: 5
Hello all, I can use your advice as I haven't been 100% diagnosed quite yet.
About 4 months ago I went to a dermatologist because my hairdresser noticed a bald patch on my head. I had also developed 2 rashes in my forehead side that were not bothering me, and the doc said it was nothing. I ended up with more rashes on my face - 2 under my eyes and 2 under my nose. Saw another dermatologist and the skin biopsy test for lupus came back as only "possible connective tissue disease". He sent me to a rheumatologist who told me I have negative ANA. She did more tests which showed I have protein in my urine which made her worried. An aphtae also appeared this week. She told me to go to a main lupus center to try and confirm. Dermatologist told me I have no serious allergies, so now he also thinks it might be discoid lupus. He is going to do one more scratch test soon, and meanwhile told me to use sunscreen, gave me stronger cortisone creams as the previous one was helping only slightly, and said he does not recommend Plaquenil for now as it has vision side effects. He also gave me shampoo and lotion for my hair, and will do cortisone injections in the bald area next time I see him. There is baby hair growing in some areas, so I am a little hopeful it can grow back. Will it? I am linking this to the time I left my job in October and was highly stressed... I spent quite a few bad months depressed and didn't eat that well. Maybe that's what caused this? I am obv quite depressed with all this, as I am between jobs now and looking for a new one, but terrified of the idea that I might be called for an interview and I am not looking good right now. Any suggestions on the doc's opinions above, the labs and treatments? Thank you in advance!
Registered: 1490230191 Posts: 215
I am not much more ahead of the game than you, but was recently diagnosed with discoid lupus from a spot in my scalp. It was very red and scaly, but had not lost hair....at least I don't think....it was at the base of my head - just up into the hairline. I use Betamethasone Valerate liquid that that has worked well on my scalp.
I also had other rashes in the summer on chest. And redness on face. Sometimes rash in the corner of my eye. I have a spot of the side bridge of my nose, that might be a discoid spot? I do have a positive ANA, which is not always the case with discoid alone. Though I have read that even rosacea can cause a positive ANA. But I think I have some mild systemic issue with vascular issues in hands (though not Raynauds) and some muscle/tendon/mild joint pain. So for now I am UCTD w/discoid lupus. I did start on Plaquenil, which is supposed to be good for discoid. As well aid in preventing progression of other issues. Though the eye risks are certainly a consideration, I think the risk is relatively low....particularly with regular monitoring from an ophthalmologist. Hope you can get a plan that works for you and some more concrete answers!
Senior Contributing Member
Registered: 1419730148 Posts: 1,002
Hi, gigi! I'm one of the people who suffered vision damage from Plaquenil. I'm surprised your doc wants to avoid it for that reason, as it's very rare, and it typically affects people who've been on high doses for years. Many ophthalmologists see only a few cases over their entire career. A dermatologist put me on Plaquenil originally, and I thought it was great. What happened to me was a fluke. If some other doc puts you on it at some point, get your eyes checked twice a year, and you should be good to go. :)
Registered: 1477777994 Posts: 22
I agree! Before taking the plAcquenil, I asked several opinions! The risk to the eyes are very mild! I was told by a pharmacist, rheumy and optometrist that the statistics for eye damage is mainly caused by the extremely high doses given to people with malaria! Which the dosages requirements is triple what we take! They also told me that plaquenil has majoring improved the life expectancy of lupus patients due to slowing down the amount of flairs a patient will have a year too!