Lupus Nephritis

Hi all! I wanted to share information about the SPOTLIGHT Study for lupus nephritis which aims to study if an experimental potential treatment option can reduce protein excretion in the urine and reduce kidney function loss. You can submit a 5-minute application to see if you are pre-qualified for the study. You can visit this link app.patientwing.com/campaign/mighty-ln to learn more about the study and see if you may pre-qualify by submitting the questionnaire, which takes less than 5 minutes to fill out. If you have questions, feel free to reach out. #LupusNephritis #Lupus

Hi, my name is Letty84. I'm here because

#MightyTogether #LupusNephritis #Lupus

Hi, my name is Sentence_4_life.

I'm worried about where to go from here. I have been dealing with these issues for a very long time. I feel like the doctors are tired of finding more and more autoimmune issues. I am tired of hearing it and having to deal with the effects. The medical issues I have, hold me back. But the medications are worse. I want to move and live my remainder of my life somewhere I would like to be. Because the regulations of the medications, it is the real issue of me not being able to move somewhere more affordable. The government has stepped in, and the doctors are no longer taking the proper care for you and your stuck if you are put on opioids early on and moving to another state isn't as easy as it sounds. Finding another set of doctors like I have now. Is extremely difficult, regardless of all your images, records, reports, medical documentation. They want you to start all over again and not prescribe the same meds. I am 62 years old. I just want to move where I wish to. Go to a doctor's office get to know the doctor like the old days. Get my medication filled and go back to my life. I have been attempting it for 3 years. I hit brick walls of what another doctor wants and etc. I'm old, tired, and want to relax for my remainder here.

#MightyTogether #Anxiety #Depression #Migraine #ADHD #RheumatoidArthritis #OCD #Fibromyalgia #MultipleSclerosis #Endometriosis #LupusNephritis #Lupus #RaynaudsPhenomenon #CeliacDisease #SjogrensSyndrome #Arthritis #PeripheralNeuropathy

I was diagnosed with Lupus nephritis after a horrible flare up 7 months ago. Since then it’s been nothing but a laundry list of medications and doctors visits and blood tests. The medications are horrible namely prednisone with all of the side effects like moon face, insomnia, and weight gain. I don’t want this to be my forever. I’ve seen people say they’ve “cured” themselves by diet and lifestyle changes. Can anyone speak to this? If not any suggestions of medications other than prednisone?? Thank you in advance!

Hi, my name is Djjohnson1410. I'm here because I am living with lupus and I’m barely able to walk or move my joints swell up all the time my doctor finally has me on infusions but they don’t seem to be helping and I’m wondering if anyone else has came up with something that has helped them

#MightyTogether #LupusNephritis #Lupus

I’m so tired. I found out a few days ago that I cannot have children, I cannot get pregnant and carry a baby to term, let alone safely.
I have Lupus nephritis- lupus in my kidneys. I have anti-phospholipid antibodies syndrome, infertility is a major symptom of this condition too.
You kind of need healthy, functional kidneys to have a baby, and have blood that functions normally or at least efficiently enough- to carry a baby. I have neither.
People have been telling me “well you can always adopt!” But that’s not the point. Besides, I was adopted when I was a baby. I’ve battled with the difficulty of being adopted- I couldn’t adopt a kid to build my family as I couldn’t help them cope with their experiences when I can barely do the same for myself.
It doesn’t replace the fact that I feel so empty, knowing that I should be able to have a pregnancy. Every other woman on the planet is able to have a baby. Almost every woman on this planet has functioning organs and blood at the very least. I feel like I have failed in every single aspect of life a human could fail in. And on another stupid note, who on earth would want to marry an infertile, chronically ill, medically fragile women?! No one. Or at least not anyone who would fit my standards of basic human decency. I’ve been too disappointed by men who’ve tried to take advantage of me for those reasons.
I’m broken on a cellular level, my organs are broken, my mental health is broken… and now the one thing I was counting on, to complete in my life as a women? I am broken there too. I’m a failure of a woman, and a human. How do you move on in life when your future is wrecked in every single way possible, and it’s set in stone? Every option is awful and I’m so so tired of all of this. #Lupus #LupusNephritis #SystemicLupus #AntiphospholipidSyndrome #Infertility #autoimune #Vasculitis #MentalHealth #Anxiety #Depression #PTSD #Grief #advisemeplease

Hi guys! Ive been on the same meds for 3 years and now im pretty sure they are causing me mild indegestion. Ive talked to my doctors and they agree that its probably my meds. Does anyone have any tips to aleviate a tummy ache? #ChronicIllness #Lupus #LupusNephritis

So I was on a pretty heafty dose of prednisone last year during the summer die to my Lupus. I had very limited mobility and it was overall a pretty terrible experience.
Anyway- I ended up gaining a lot of weight very quickly, and it’s become very difficult to loose.

I used to be 190LBS, I’m 5’6, with broad shoulders. So I looked pretty healthy, and I was very confident and proud of myself!

But because of my Lupus and medications like prednisone, I’m now 235LBS and I just feel awful. It seems like the prednisone has made it so much harder to loose weight., even thought I have stoped taking it months ago!
I’ve been dealing with depression and anxiety, as well as overall crippling fatigue- people, including doctors- keep telling me “just get moving! Go on walks! Eat healthy! Don’t eat processed foods!” But they seem to forget I struggle with chronic pain, horrible fatigue, exercise and heat intolerance and an overall lack of good days.

So how on earth am I supposed to loose weight? So I can feel better about myself again? I’m loosing hope with it, and I just feel so lost and lonely and exhausted. I’m not flailing anymore,so why do I feel so bad?

Chronic illness is becoming too much for me.
#Lupus #LupusNephritis #SystemicLupus #SystemicLupusErythematosus #ChronicFatigue #ChronicPain #KidneyDisease #AntiphospholipidSyndrome #Vasculitis #Depression #Anxiety #Prednisone #CheckInWithMe #PTSD

I just wanted to share on here a positive thing today. I'm 18 years old and a college student and walking all around my campus can be killer on my joints. I commute but the parking is always insanely full by the time I get on campus so I devised a solution. About a month ago I applied for and recieved a disability parking placard. This has done wonders for me. The spots are always open all over campus and I can park in between my classes rather than far away from one or the other. It feels weird to be a young person with an invisible disability climbing out of my car next to people who side by side look "more disabled" than me. Sometimes I feel like im taking a spot away from someone who actualy needs it. Ive been trying to remember that I AM someone who actually needs it. It's ok to need accomodations big or small. #LupusNephritis #Arthritis #ChronicIllness

Hi, my name is BeyoutifulHaiti_R22. I'm here because

#MightyTogether #LupusNephritis #Lupus