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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Has Plaquenil Helped You?
A MyLupusTeam Member asked a question 💭

From the beginning of treatment my rheumy put me on 400mg of Plaquenil daily. I take one pill in the morning and one at night. I struggled sticking to my meds and treatment plan for the first couple months or my diagnosis because I was in denial and didn't really believe it so I just recently started taking my medications again as prescribed (I was diagnosed October 2015).

The Plaquenil really upsets my stomach. I get acid reflux and it triggers my GERD and I wake up with a sore throat all… read more

posted January 27, 2016 (edited)
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A MyLupusTeam Member

I was on 400 mg of plaque renal A-day from 2010 until 2018 and my roommateologist only took me off of it because I was in I see you for a week with supticemia because of a blood infection from a… read more

posted 7 days ago
Does Anybody Have Trouble Find Words When They Are Speaking To Someone , Or Have Difficulty Concentrating?
A MyLupusTeam Member asked a question 💭
posted January 11, 2015
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A MyLupusTeam Member

Yes I can relate. I struggle to find the word I know I want.

posted March 12
Memory/dizziness
A MyLupusTeam Member asked a question 💭

I keep getting head spins and have noticed my memory seems to have just gone. I'll be asked to do something and 2 mins later, I've completely forgotten. Does anyone know if memory fog/loss is mainly during a flare up or does it come back?

posted February 11, 2018
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A MyLupusTeam Member

I'm almost constantly dizzy and lightheaded. When I walk it usually feels like I'm walking on a slanted floor. I trip and stumble quite a bit. Sometimes a hard fall which usually results in bad… read more

posted 5 days ago
What Do You Find The Most Challenging About Living With Lupus?
A MyLupusTeam Member asked a question 💭
posted August 31, 2022
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A MyLupusTeam Member

Steroids' mess up your adrenals and then the docs don't understand adrenal fatigue. It is a real problem. Still doing my research on this problem...will keep y'all posted on findings. i am doing… read more

posted March 7
What Advice Do You Have For Others About Managing Fatigue?
A MyLupusTeam Member asked a question 💭
posted April 27, 2022
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A MyLupusTeam Member

feliz Ano 2023 adelante y un día a la vez 🙏con Dios todo se puede no es fácil pero con fe todo es posible bendiciones 😍

posted January 5
How Do People React When You Tell Tr Hem You Have Lupus?
A MyLupusTeam Member asked a question 💭

how do people react when you tell them you have Lupus usually get a strange reaction .like Oh my God..I don't want pitty nor do I like that reaction..i was just wanted to know your experiences..

posted January 21, 2016
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A MyLupusTeam Member

I feel that when I tell people that I’ve always had Lupus (SLE) they can’t believe it because I’ve always been so vivacious and joyful !!

posted March 8
Insomnia
A MyLupusTeam Member asked a question 💭

Any ideas to help with insomnia?

posted January 26, 2016
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A MyLupusTeam Member

Medical marijuana helps! Indica is the best to help fix your sleep. They sell it in chocolate or in oil drops. If you can't afford going to a doctor specialized in this, or the marijuana itself, maybe… read more

posted July 1, 2022
Does Anyone Have Good Treatments For Mouth Sores?
A MyLupusTeam Member asked a question 💭

Does anyone have good treatments for mouth sores? I’ve gotten painful lesions on my tongue and inside my mouth for the last 35 years, and only recently found a couple products that helped. The best one is the over the counter Colgate mouthwash called Peroxyl. You are only supposed to use it for a week, but mine were gone in five days. The other thing I found is L-Lysine, an over the counter protein precursor. I take it daily and after serval weeks it started helping my mouth sores but… read more

posted March 3, 2018
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A MyLupusTeam Member

Yes Lysine helps a great deal, but you can also use Tums believe it or not. If I have a really painful sore I put a Tum in my mouth and just let it sit there on the sore until it's pretty much… read more

posted January 9
What Foods Do You Eat To Help Manage Your Condition? Which Ones Do You Avoid?
A MyLupusTeam Member asked a question 💭
posted February 23, 2022
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A MyLupusTeam Member

I've been doing a whole30/paleo approach and its helped SO much.

posted January 1
Is Anyone Really Sensitive To The Touch? For Instance, My Lower Legs Hurt So Much With The Slightest Amount Of Pressure.
A MyLupusTeam Member asked a question 💭
posted February 12, 2018
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A MyLupusTeam Member

Yes, I do share this type of pain with you. Diagnosed as neuropathy from lupus, fibromyalgia, and joint and nerve pain. I take celebrex, Lyrica, and alpha lipoic acid. Pain is still there, but… read more

posted February 11
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