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gamma
04-20-2009, 06:53 PM
Hello to everyone, and thanks for reading.

About a year and a half ago, my husband had this strange stuff going on with his skin. Started on his top back and shoulders, and his arms. Arms looked totally different then his back though. Took me several months to get him to go have it looked at, and then he went to an after hours clinic. They told him it was psoraisis, and gave him a Derm.

Went to Derm, he said psoraisis, 7 months of wasted treatment, that did not improve it one bit. It did make it worse, actually made more of it, and some other symptoms started popping up.

New Derm, he diagnosed skin lupus, biopsy confirmed(first Derm never did a biopsy), ordered blood work, sent him to Opthomologist, started him on some creams, and just got the prescription called in for Plaquenil.

So now we have concerns with some of what this Derm is doing, with the blood work results and some of his other symptoms. So I came to post some questions, do some reading(already have read a ton of posts on here) and hopefully get my husband headed in the right direction.

mountaindreamer
04-20-2009, 07:09 PM
hi gamma and welcome,

we have other spouses/mates who are members here as they search for answers about how to help their partner. Your husband is lucky to have you on his team.

Most of us are on plaquenil...it is the most common treatment for lupus, but it can take up to 6 months to work. I am surprised that your husband has not been to a rheumatologist....this is the dr. that specializes in lupus, and you should find a good one in your area.

feel free to ask any questions, there are some incredibly knowledgeable people here. Also, if you will look in the "stickys" in the lupus symptoms section, you will find a great deal of information. Oluwa has a sticky entitled something like 101 home treatments (not accurate, but close enough for you to find).

I do know that your husband needs to protect himself from the sun and other uv rays. requires wearing clothing that covers the body, wearing a hat and sun glasses, and using high spf sun block. the sun and hot showers can aggravate the skin rash.

again, so glad you joined, and i look forward to sharing informtion with you.

gamma
04-20-2009, 07:37 PM
Thank you for saying that about a rheumatologist, cause that is one of the questions I was going to ask. Husband likes new Derm, says he couldn't find anywhere online, that said a rheum should be main Dr. Our daughter is a nurse, and with her and I both showing him things, and her telling him the med Dr she spoke to said see a rheum anyhow, he needs more proof. Based on the old Derm misdiagnosis, and some things on the blood work. New Derm said 3-5 days for blood work to come back, they would call. Waited 2 weeks, husband had to call them, talked to nurse, all she would say is Derm had several things to check on, but Derm was now satisfied with blood results, gonna call in Plaquenil prescription and see you in 5 weeks.

I have done a lot of research on this site and others with the sun and lights. Taking that part extremely serious. I am a sun lover, however was out 2 days this weekend getting the flower beds spruce, and I had his special UVA/UVB on. He ordered a UV hat, gloves and several long sleeve shirts over the weekend to. He is also looking into something for our home windows, have a ton of high ones, want the light coming in, but not the UV rays, and also for his car. He spends a lot of time driving for work, and he is pretty sure, that is what caused his hands to start having the skin problem.

He also changed all the light bulbs in his office, he had the new squiggly ones, and believes that might be what started it on his scalp. When he thought about his scalp started after he changed to those at work. At home we don't have them, I buy for home, and just thought they were weird looking, so stuck with the old kind.

Rastagirl
04-20-2009, 09:47 PM
Hello Gamma.... :wavey:

Just wanted to welcome you to the site. We're glad to have you...and your husband. My heart goes out to you both. I'm sending you understanding hugs....one for you....one for your husband. I'm sorry he's been diagnosed with Discoid Lupus. We have several wonderful guys here on the site...I'm sure they'll be along shortly to give you both encouragement and support.

I've had Lupus (not Discoid, though) for 27 years and have been in a remission for about the last 15. Along the way, I've seen many different Specialty doctors, and I have to agree with the others that recommend your husband get in with a good Rheumatologist. He needs to have a main doctor that is familiar with auto-immune diseases, especially Lupus. He needs the Dermatologist, of course, since he has discoid type, but keep in mind that, in my experience, Dermatologists play a lot of guessing games when it comes to rashes, and they like to try different kinds of creams and prescriptions, which is good, but oftentimes you will go round and round in circles and not find anything that works. I used to get very frustrated when I had to see the Dermatologist because they never seemed to know exactly what the rash was, or the best way to treat it. And sometimes we'd treat them with numerous things and nothing seemed to help. I think having a Dermatologist and Rheumatologist that will work together to help your husband with his Discoid Lupus is a smart way to go.

Let your husband know we'd love to have him join us as well. We're here to support those with Lupus and their families and friends that love them.

Again, welcome....look forward to hearing more from you.

Fondly,

Lori :heart:

froggal
04-21-2009, 12:41 AM
Hello gamma
Welcome!! It sounds like you are having quite the time! Please know that we are always here for you. Lots of the members are very helpful and will give you great ideas that will help you a lot! Always a friend ~ Angie