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1 medium

Has Plaquenil helped you?

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… read more

edited, originally posted almost 3 years ago
A MyLupusTeam Member said:

I use the CBD oil 500 mg twice a day and I also use the lotion. I am hoping to stop plaquenil. I did stop methotrexate due to asthma triggers. Predisone… read more

posted 3 days ago
7 medium

Reading about Lupus

New to this site :) This is not a question but rather a comment regarding the diagnosis of Lupus and it's symptoms. :)

When I was first diagnosed with Lupus, a ANA test and others I told the Physician, a GP that I would worry about "that" (meaning Lupus) if I ever had any symptoms.

Almost three years later I began having problems walking, using my hands, washing my hair, I lost tolerance to cold in my hands and feet and my cognitive function had really gone south. I went in a few times over… read more

posted about 4 years ago
A MyLupusTeam Member said:

Lupus Convention in Edmonton, Alberta April 8/17 - informative, speakers, and THE BEST LUPUS BOOKS YOU CAN FIND available for lending - see read more

posted over 1 year ago
2 medium


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 10 months ago
A MyLupusTeam Member said:

A flare is generally considered at action which is triggered by an outside source. Such as being out in the sun to long and getting a rash. The sun… read more

posted 2 days ago
1 medium

What’s an ANA test?

The antinuclear antibody (ANA) test is commonly used to look for autoantibodies that attack components of your cells’ nucleus, or “command” center, triggering autoimmune disorders like lupus. 95% of people with lupus test positive for ANA, but a number of other, non-lupus causes can trigger a positive ANA, including infections and other autoimmune diseases. The ANA test simply provides another clue for making an accurate diagnosis.

For patients with a positive ANA, more tests are usually… read more

posted 10 months ago
A MyLupusTeam Member said:

What a great idea!

posted 10 months ago
1 medium

What are the signs of Depression?

Lupus and Depression: Knowing the Signs

Life with lupus can be challenging. With symptoms that come and go, disease flares and remissions, and the uncertainty of what each day will bring, it’s normal to experience feelings of unhappiness, frustration, anger, or sadness. It’s also normal to grieve for the loss of the life you had before lupus.

There is a difference between temporary negative feelings and negative feelings that become overwhelming and long-lasting, which may signal… read more

posted 11 months ago
A MyLupusTeam Member said:

posted 5 months ago
1 medium

Why is lupus an unknown disease?

Why is Lupus an UNKNOWN DISEASE?

What do you say when asked, “how are you?” or “why were you absent last week?” I always gave a vague rehearsed answer like, I’m fine thank you for asking or I was a little under the weather, knowing that I was having a monster flare. I use to feel like I didn’t want to burden anyone with my illness... I mean, do the majority of people really care? I believe they do!
Now I boldly say “I have a chronic disease called Lupus” if they’re interested, I… read more

posted 11 months ago
A MyLupusTeam Member said:

Hi Meggles , Welcome. How are you doing. Have any hobbies.Take care.Thanks for hug.

edited, originally posted 26 days ago
1 medium

Lupus Awareness

Hi Warriors it’s Sydnee! I am a Lupus Advocate and will be attending the United States Lupus National Summit in Washington D.C. held before the Senate.
I’ve been active promoting Lupus Awareness with a booth setup and giving handouts at church bazaars and health fairs. Formed teams that collected thousands of dollars in donations for the Lupus Awareness Walks and I’ve made phone calls and wrote letters to our legislators in regard to Lupus Awareness.
I’m excited to attend the 2018 National Lupus… read more

posted 11 months ago
A MyLupusTeam Member said:

Thank You Sydnee for speaking up and advocating for us with this difficult illness Lupus....Very much Appreciated!

posted 22 days ago
1 medium

Do you look at your pee? Kidney condition warning signs

Lupus Fact:
Up to 60% of all people with lupus will develop kidney complications.

Kidney disease often presents without obvious symptoms. Because of this, it is important to be on the lookout for the following symptoms:
1. Foamy urine
2. Blood in the urine
3. Dark urine
4. Changes in the frequency of urination
5. Water retention or weight gain throughout the body, including the legs and hands

posted 11 months ago
A MyLupusTeam Member said:

Good info so true Sydnee notice sometimes ankles alittle but could be poor circulation not moving around a lot with this crappy cold April we hv had read more

posted 7 months ago
1 medium

Are You Waiting for Your SSI Disability Claim to Be Approved??? Inquire About the "Compassionate Allowances List"

I've been going through the SSID process now for well over two years. This info was passed on to me...I hope that it will be helpful for us Lupies in Waiting!

"The Compassionate Allowances List"

Several years ago, it became apparent to Social Security officials that the long waiting time for decisions on disability applications was causing particular hardship for people who were seriously ill. So the… read more

posted almost 2 years ago
A MyLupusTeam Member said:

WoW..I wish I had known abt tht whn I 1st applied bck n 2003. I had to survive on $401.00 a month with 2 kid's. I was let go frm my job in May 2003 bcuz… read more

posted almost 2 years ago
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