Your ANA is borderline positive as mine is. Without knowing what else is going on, it is hard to call. Regardless, a rheumatologist is definitely a step in the right direction. A lupus dx is never...
I think for me, I would never dream of going to a beach or pool. I just don't care to go through having the lesions again. And I never knew why until my dx, that being in the sun actually made me...
Labs should be done quarterly to check liver function if you are taking Plaquenil as well....
I use it on my arms, neck area, back of neck etc.. I use Cliniques facial sunscreen. Don't forget your ears! I generally wear ling pants, sleeves. I use a wash in product called Sunguard which washes...
Yes. Since 2012. I hear what you are saying, but if you want to be lesion free, you have to consider the sun an enemy. I use Neutrogena Ultra Sheer sunscreen SPF 100 DAILY....
Were you given anything such as a steroid ointment/cream for flares? You MUST avoid the sun and be diligent about sun protection with DLE....
Hi Bear I also have DLE and was dx'd in 2012. I was prescribed Clobetasol (High potentcey steroid) cream for my lesions. Like you, mine presented on my nose, scalp and upper back. I had no issues...
I have very sensitive skin. I have had good luck with Neutrogena products....
I agree Beave https://www.hopkinslupus.org/lupus-info/diagnosing-lupus/...
It is possible.... https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/ [Edited to make link active.] Thanks for the fix Lynnwood :-)...
Lynnwood gave you good advice. Lupus is dx'd by a combination of symptoms and labs. No one here can or should tell you if you have lupus. Lupus can take many months or years to be diagnosed because...
Hi 00hope00 My concern is the doc has told you mild lupus. As you said, it doesn't feel mild to you. Do you know if she has other lupus patients? There is nothing mild about lupus. Everything about a...
Lynnwood is right, "It is important to realize that even though 98% of people with lupus will have a positive ANA, ANAs are also present in healthy individuals (5-10%) and people with other...
Plaquenil took more like 4 or 5 months for me, so don't give up! Being a nurse, you should have a lot of resources. It really doesn't matter what name they give it, Lupus, UTCD, MCDT.... the initial...
Another very informative site is the Johns Hopkins Lupus site.... https://www.hopkinslupus.org/lupus-info/diagnosing-lupus/...
Hi Lorn The first step would be to request an ANA test. I find the Johns Hopkins Lupus site very helpful. https://www.hopkinslupus.org/lupus-info/diagnosing-lupus/...
Hi Sun avoidance is key. Wear sunscreen daily and avoid sun exposure. See if that helps....
Plaquenil takes 3-6 months to build in the system, so Prednisone is usually prescribed for some more immediate relief....
Unfortunately, weight gain is usually a given on long term/ high dose prednisone therapy. I hear what you are saying, it sucks. For me, I had to weigh (forgive the pun) feeling good vs looking good....
I have found most clothing from Coolibar and other companies plain and/or just plain ugly and ridiculously priced. There is a product called Sunguard that washes 30 SPF into clothing. Just throw it...
Actually, you should avoid garlic & alfalfa . From Johns Hopkins Lupus Center: (1) Sunlight People with lupus should avoid the sun, since sunlight can cause rashes and flares. Some people are more...
Only a qualified rheumatologist should be diagnosing SLE. Ask your GP for a referral to one that has experience with AI issues....
I have never heard of an asthma med causing drug induced lupus. You need to be dx'd by a Rheumatologist....
"I'm nervous about prednisone and methotrexate with her being so young. For my husband, they did more damage than good. " Where on earth did you come up with this? What doc would suggest this for a 4...
Regardless of what name you put on it, lupus, MCTD, UCTD etc, you have been put on Plaquenil and rightly so. It is the first line of defense for AI issues. Keep in mind that Plaquenil takes 4-6...
I have a script from my dermatologist....
The sun increases disease activity in general. Not just things you can see like skin issues. You can also purchase a wash in laundry product. http://www.sunguarduv.com/...
Dermablend Cover Creme works really well....
Clobetasol worked well on my lesions. My derm, who interned with a lupus specialist, did not recommend laser treatment. He said it can irritate discoid and cause a flare. Kind of how Michael Jackson...
Another great alternative is a wash in product called Sunguard. It washes in 30 SPF to cotton clothing, I use it every year. Very affordable and you just throw it in with your laundry!!...
From John Hopkins http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/ [Just edited to make link live.]...
Yes, you do. :)...
I have DLE as well. Clobetesol will help. It is a very potent topical steroid. It cleared my scalp lesions. The only way to keep it at bay is sun avoidance. Wear a wide brimmed hat at all times when...
Hi Ari I have DLE as well. Let me know if you have any more Q's. :)...
I agree w/ Lynnwood. I was told a week and got a call 2 days later....
My heartfelt sympathy to Barbara Lee's family....
Plaquenil takes months to build in the system before you feel any improvement. Give it some time. I didn't see any change until about month four....
It can be a very long waiting game for a dx. The very reason lupus is hard to dx is that there are many AI's that have similar symptoms. Some lupus patients have overlapping conditions. Lupus is...
My ANA has been borderline for 28 years. You can be dx'd by biopsy for DLE & CLE. I was dx'd for DLE. And my derm did a complete lupus blood workup first....
Lynnwood is spot on. Lupus "symptoms" can be similar to many disorders. This is why it takes so long for many to get a dx. And no, actually the rash does not look like a malar rash to me. Try to...
The 11 criteria you’re referring to were not developed to help doctors diagnose lupus patients - they were developed to help researchers set standards for patients allowed into various clinical drug...
Lynnwood is correct. Have you seen a rheumatologist?...
I would stop worrying....
My dermatologist has told me that dermabrasion can exasperate discoid and cause it to flare. I am not willing to take a chance and make it worse. Probably why Michael Jackson was continually having...
IF you have DLE, discoid, it is really imperative to avoid the sun and wear a high SPF sunscreen at all times. Yes, there are some people with SLE that can be in the sun, but they are few and far...
The reason I asked is because my boyfriend had purchased a jar of pistachios a few weeks before and the doc said that is what got the ball rolling. He had on & off pain for a couple of weeks before...
That sounds like Diverticulitis. Nuts, seeds etc get caught in the pockets of the large intestine and cause inflammation. My boyfriend let it go too long and had to have a temporary colostomy. Make...
I would write a brief document, describing how lupus effects you and reference any medical info you can gather on lupus is general, ie sun exposure can aggravate, stressors, etc. and request that...
DLE (discoid lupus erythematosus) does appear on the face. Especially the nose and cheeks. It is characterized by red, scaly lesions. Mine started as you describe, but got worse over time....
Kristina, What do you mean you overheard he was a rheumy in the waiting room? You have been posting about seeing this guy. Is this not your second appointment? Why would you not ask what the...