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A lupus support and discussion community for patients and caregivers to share information about autoimmune disease, SLE, flares, treatment, and more.


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LupusConnect

To fight for opioid therapy, an Inspire member calls for action

Chronic-Inspire's journal

Chronic-Inspire

to-fight-for-opioid-therapy-an-inspire-member-calls-for-action

200103

By Radha_Inspire Digital Editor, Inspire “I think it is time to organize ourselves into a lobbying group somehow.” Constance Small (acorns02459) wrote that on October 19th on Inspire as part of a conversation about what happens when it becomes difficult or impossible to get opioids to treat chronic pain. “I would be very happy to join anyone who would like to organize a campaign to ... Read More

LupusConnect

A new collaboration, "Patient Perspectives," to amplify patients' voices

JohnNovack's journal

JohnNovack

a-new-collaboration-patient-perspectives-to-amplify-patients-voices

200103

From: John Novack, Inspire Dear members, We're excited to let you know that we just began a partnership, "Patient Perspectives," with the industry magazine Life Science Leader. A goal of the collaboration is help life science executives understand better the journeys of patients and caregivers facing significant illnesses. We invite you to read and share the new guest column, "Making ... Read More

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LupusConnect

Newly diagnosed (maybe)

In: I might have lupus

Rondaline

newly-diagnosed-maybe-4

200103

Hi, my rheumatologist started me on Plaquenil yesterday. He said he’s sees the early stages of Lupus, he thinks. I have been diagnosed with Fibromyalgia for the past 10 years and struggling with autoimmune symptoms ever since. This new Dr. whom I have seen twice so far, is convinced that I have more than just the fibromyalgia. He is starting me on the Lupus meds to see if I show improvement ... Read More

LupusConnect

I Beat Lupus 🙌

In: I have lupus

Jay_Deshawn

i-beat-lupus

200103

😇 have been watching over me 🙏 As of yesterday I have finally beat Lupus!!! 👊 I no longer have to be on steroids! An my numbers came back clear!! I've been dealing with lupus for over 9 years. In the beginning of my stage, I was told there was no hope for recovery only suppression . I thought it was A curse, it took me sometime to get comfortable with the feeling. But I never felt ... Read More

LupusConnect

New column: "Grieving the Loss of Your Physician"

JohnNovack's journal

JohnNovack

new-column-grieving-the-loss-of-your-physician

200103

From: John Novack, Inspire Dear members, I'm writing to share with you the latest in a series of “Experts by Experience” columns, as part of a collaboration between Inspire and Mayo Clinic. We invite you to read and share "Grieving the Loss of Your Physician," by Kari Ulrich. Ms. Ulrich, who lives with multiple disorders, including fibromuscular dysplasia (FMD) and Ehlers-Danlos Syndrome ... Read More

LupusConnect

Persistent and Resistant Fatigue

In: Signs and symptoms

YousefYahia

persistent-and-resistant-fatigue

200103

Hi Everyone I was fighting lupus for 9 years I do well every time I use a high dose of cortisone now I use very low dose my main problem is the debilitating fatigue i cant stay awake for more than 8 hours.I sleep too much. my laboratory results didn't reflect any new disease activity do you have any idea , why I have this severe fatigue. Thank you Fighters ... Read More

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LupusConnect

Need Support - About to Start Plaquenil

In: Newly diagnosed

GammaRay907

need-support-about-to-start-plaquenil

200103

After months of persistence, I finally found a great rheumatologist who diagnosed my lupus and prescribed Plaquenil. I read the drug pamphlets and did the research. I had the requisite ophthalmic tests and was given thumbs up to proceed. My rheumatologist called in the prescription, which I will pick up after work today. I have been desperate for relief from the devastating fatigue ... Read More

LupusConnect

Lupus and Fevers

In: I have lupus

mscanl11

lupus-and-fevers

200103

I was diagnosed with lupus about two months ago after about 4 years of going to multiple types of doctors. I have had chronic low-grade fevers (99.5-100.6) for the last eight months. My doctor put me on prednisone for 16 days and hydroxychloroquine 400 mg per day. However, the fevers did not cease completely. I was sent to an infectious disease specialist and nothing was found. My ... Read More

LupusConnect

If you've stopped taking plaquenil, did you start getting flares?

In: I have lupus

Beethie

if-youve-stopped-taking-plaquenil-did-you-start-getting-flares

200103

I am asking this question for a dear friend of mine. We both have SLE and are on Plaquenil. SHe has been taking off it by her rheumy because it has affected her vision. She is worried that her flares will come back with a vengeance. Have any of you stopped taking plaquenil and how soon after stopping the medicine did you start flaring? How long did it last? Any detailed information ... Read More

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