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So many ways to heal and open up to wilder conversations
Having been diagnosed at a very young age, just 4, with a rare form of glomerular
nephritis
(kidney inflammation) that lead to the eventual failure of my kidneys at 14, a great gift of a cadaveric kidney transplant at 21, the failure of that almost 20 years later...another kidney gift in 2019....this
Having been diagnosed at a very young age, just 4, with a rare form of glomerular
nephritis
(kidney inflammation) that lead to the eventual failure of my kidneys at 14, a great gift of a cadaveric kidney transplant at 21, the failure of that almost 20 years later...another kidney gift in 2019....this
WhollyAligned
Administrator
in
Nutrition and Yoga for Health
1 year ago
GP says increase Levothyroxine from 75mcg/day to100mcg BUT T4 level 14.60pm is OK (12.0-22.0)although TSH @ 18.60 mU/L is raised (0.27-4.2)?
I also have SLE, DLE, lupus
nephritis
and type1 diabetes.
I also have SLE, DLE, lupus
nephritis
and type1 diabetes.
Suvi8901
in
Thyroid UK
2 years ago
B-cell protein sBCMA may be useful biomarker of SLE activity in children
Childhood-onset SLE tends to be associated with higher disease activity and a greater prevalence of lupus
nephritis
, or inflammation in the kidneys.
Childhood-onset SLE tends to be associated with higher disease activity and a greater prevalence of lupus
nephritis
, or inflammation in the kidneys.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
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stopping mycophenalate when you are unwell?
hi all i’ve got lupus
nephritis
, sle and lupus profundus. I’ve been advised to stop mycophenalate by rheum for 7 days due to gastro problem. I should also have Antonio but they are out of stock at the moment, Stopping mycophenalate feels very scary as have never done this.
hi all i’ve got lupus
nephritis
, sle and lupus profundus. I’ve been advised to stop mycophenalate by rheum for 7 days due to gastro problem. I should also have Antonio but they are out of stock at the moment, Stopping mycophenalate feels very scary as have never done this.
Andfiona
in
LUPUS UK
2 years ago
All over body swelling
Hi I have SLE, class 5 lupus
nephritis
and recently Sjogrens. I am fortunate that I have never had the joint pain and swelling although I have quite loose joints when flaring but have bad skin and hair involvement. Right now I have very swollen parotid.
Hi I have SLE, class 5 lupus
nephritis
and recently Sjogrens. I am fortunate that I have never had the joint pain and swelling although I have quite loose joints when flaring but have bad skin and hair involvement. Right now I have very swollen parotid.
Emily00
in
LUPUS UK
2 years ago
Lupkynis Approved in UK to Treat Adults With Active Lupus Nephritis
“The MHRA authorization of Lupkynis for individuals with lupus
nephritis
in Great Britain, on the heels of the marketing authorization in the EU, further expands the availability of Lupkynis as a treatment option for people with lupus
nephritis
,” said Peter Greenleaf, president and CEO of Aurinia, in
“The MHRA authorization of Lupkynis for individuals with lupus
nephritis
in Great Britain, on the heels of the marketing authorization in the EU, further expands the availability of Lupkynis as a treatment option for people with lupus
nephritis
,” said Peter Greenleaf, president and CEO of Aurinia, in
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
University of Cambridge kidney disease study
I wanted to ask if anyone else with a current or past lupus
nephritis
diagnosis has been approached by the University of Cambridge to take part in a study for improving kidney disease outcomes? I received a letter and wanted to make sure it was legit before I agreed to take it further.
I wanted to ask if anyone else with a current or past lupus
nephritis
diagnosis has been approached by the University of Cambridge to take part in a study for improving kidney disease outcomes? I received a letter and wanted to make sure it was legit before I agreed to take it further.
Jamst3r
in
LUPUS UK
2 years ago
Itolizumab Shows Promise For Lupus Nephritis Patients in Early Trial Data
nephritis
.”
nephritis
.”
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
European Commission OKs Lupkynis for Active Lupus Nephritis
European Commission OKs Lupkynis for Active Lupus
Nephritis
The oral therapy was approved in the US in 2021 by Marisa Wexler, MS | September 22, 2022 The European Commission has approved Lupkynis (voclosporin) to treat active lupus
nephritis
, a serious complication of systemic lupus erythematosus
European Commission OKs Lupkynis for Active Lupus
Nephritis
The oral therapy was approved in the US in 2021 by Marisa Wexler, MS | September 22, 2022 The European Commission has approved Lupkynis (voclosporin) to treat active lupus
nephritis
, a serious complication of systemic lupus erythematosus
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
Itolizumab Shows Promise For Lupus Nephritis Patients in Early Trial Data
nephritis
.”
nephritis
.”
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
Kyverna Asks FDA to Begin Clinical Test on Lupus Nephritis Treatment
The filing of this IND for KYV-101 in lupus
nephritis
is an important milestone for Kyverna and we are excited by the prospect of KYV-101 opening a new era in the care of patients with [lupus
nephritis
],” Peter Maag, PhD, Kyverna’s CEO, said in a press release.
The filing of this IND for KYV-101 in lupus
nephritis
is an important milestone for Kyverna and we are excited by the prospect of KYV-101 opening a new era in the care of patients with [lupus
nephritis
],” Peter Maag, PhD, Kyverna’s CEO, said in a press release.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
Anxious about totally bizarre symptoms
I suffered
Nephritis
as a child (60 years ago) and have since then had no kidney problems except passing a kidney stone around 5 years ago. For the past 5 or 6 nights I have been woken with quite severe pain in the area of my right kidney.
I suffered
Nephritis
as a child (60 years ago) and have since then had no kidney problems except passing a kidney stone around 5 years ago. For the past 5 or 6 nights I have been woken with quite severe pain in the area of my right kidney.
Loobs39
in
Kidney Disease
2 years ago
Black SLE patients at 19 times higher risk of early heart disease
risk of cardiovascular disease (CVD) starts early after diagnosis and is strikingly high in Black people with lupus and those who present with renal disease and discoid rash (a chronic skin presentation of lupus),’’ Shivani Garg, MD, the study’s first author and the director of the Lupus and Lupus
Nephritis
risk of cardiovascular disease (CVD) starts early after diagnosis and is strikingly high in Black people with lupus and those who present with renal disease and discoid rash (a chronic skin presentation of lupus),’’ Shivani Garg, MD, the study’s first author and the director of the Lupus and Lupus
Nephritis
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
Phase 2 Trial Tests Daxdilimab as Potential DLE Therapy
“Daxdilimab is also being investigated in other autoimmune conditions that are driven by high levels of interferon, including alopecia areata, dermatomyositis, lupus
nephritis
and systemic lupus erythematosus,” Podrebarac said.
“Daxdilimab is also being investigated in other autoimmune conditions that are driven by high levels of interferon, including alopecia areata, dermatomyositis, lupus
nephritis
and systemic lupus erythematosus,” Podrebarac said.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
HCQ: do we need to pay more attention to serious ocular side effects!👆
But dermatology says it’s nephrology because of my lupus
nephritis
which had flared with a dosage increase around that time,😳🥺😟! GP scratching her head offering no answers. No ophthalmology appt as yet so to be safe I’ve stopped it myself .
But dermatology says it’s nephrology because of my lupus
nephritis
which had flared with a dosage increase around that time,😳🥺😟! GP scratching her head offering no answers. No ophthalmology appt as yet so to be safe I’ve stopped it myself .
Betty909090
in
LUPUS UK
2 years ago
working with lupus- help and advice please
hello lovely people , advice please I’m trying to do a part time job with lupus / lupus
nephritis
, bit b12 deficiency, tender kidneys, muscle and joint pains , fatigue and re occurring kidney infection. I’m on mycrophenolate and steroids ... my energy levels are poor after my shift.
hello lovely people , advice please I’m trying to do a part time job with lupus / lupus
nephritis
, bit b12 deficiency, tender kidneys, muscle and joint pains , fatigue and re occurring kidney infection. I’m on mycrophenolate and steroids ... my energy levels are poor after my shift.
Bellissimo
in
LUPUS UK
2 years ago
Interstitial/Tubulointerstitial nephritis
Hi everyone, Has anyone here been diagnosed with interstitial
nephritis
/tubulo-interstitial
nephritis
due to pyelonephritis? Thank you
Hi everyone, Has anyone here been diagnosed with interstitial
nephritis
/tubulo-interstitial
nephritis
due to pyelonephritis? Thank you
Gotroot
in
Kidney Disease
2 years ago
[i][b]DxTerity Test to Guide SLE Therapy Now Available in All 50 US States[/b][/i]
These patients tend to have more severe disease symptoms, and they are at an increased risk of developing lupus
nephritis
— a form of lupus-related kidney inflammation that can be severe.
These patients tend to have more severe disease symptoms, and they are at an increased risk of developing lupus
nephritis
— a form of lupus-related kidney inflammation that can be severe.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
Alliance Backs SLE Research by Minority Scientists
This work will provide an opportunity to better understand lupus
nephritis
in a high-risk and understudied patient group.
This work will provide an opportunity to better understand lupus
nephritis
in a high-risk and understudied patient group.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
TIN, nocturia/polyuria, kidney pain
Hello all, I wonder if anyone here has been diagnosed with tubulointerstitial/interstitial
nephritis
and is dealing with nocturia polyuria and daytime polyuria. How do you deal with this disease, is there anything that can reduce the urine volume especially during the night?
Hello all, I wonder if anyone here has been diagnosed with tubulointerstitial/interstitial
nephritis
and is dealing with nocturia polyuria and daytime polyuria. How do you deal with this disease, is there anything that can reduce the urine volume especially during the night?
Gotroot
in
Kidney Disease
2 years ago
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