My Partner has just been diagnosed with Lupus nephritis SLE stage 4
As mentioned above my partner was diagnosed in April 2011 and i want to find out as much as i can about this disease how it will affect him,myself and our family and way of life so that i can help him get through this as best i can.My partner is Alan age 48 he was diagnosed with CKD stage 3 in 2008 prior to 2006 he was a very fit very healthy very active man with over 20 years work experience in the sports industry qualified Gym instructor,qualified swimming instructor black belt in Shoto budo karate past tri-athlete on 4/11/06 he was involved in a motorcycle accident where he sustained multiple injuries he broke his neck in 2 places C1 & C6 he broke both his hands fractured his sternum smashed his left leg (which has been re-built twice) and tore the main artery (aorta) in his heart i was told to say my goodbyes at 4am but miraculously he pulled through but things havnt been easy he can walk a little using a walking stick and when outdoors he uses a wheelchair as mentioned above he was diagnosed with Lupus nephritis SLE stage 4 in April 2011 he was given a kidney biopsy in Jan 2011 the reason it took so long is because his consultant had to get his blood pressure under control before she was able to do biopsy anyway i have joined your forum as i want to be able to help him with this as best i can i found your forum while researching Lupus on google but who best to teach me than people who already have been diagnosed or people like me who are caring for someone who is suffering we know absolutely nothing about Lupus he has been put on Mycophenolate 250mg twice daily we believe he is going to be put on steroids and is now having weekly bloods done at hospital any info/help would be greatly appreciated.
Hi Mary. First I want to welcome you to the WHL family. It is clear that your family has already gone through so much and now with the Lupus diagnosis, it is another set of trials. It is believed by many that the Lupus trait, as you will, lives in many people via heredity, but it takes some kind of catalyst to turn it on. Some of the suspected catalyst are chemical exposure, stress, injury or many other type stressors. Your post above shows that your partner has suffered some of those.
I am so glad that you found us and I hope that you will find not only some answers but some comfort in having kindred spirits around to support you on this journey. Please make yourself at home. Feel free to look through the old posts or start new ones if you wish. I look forward to getting to know you and please do not hesitate to contact me at any time. Once again, welcome to the family
Success is not final, failure is not fatal: it is the courage to continue that counts.
The Following User Says Thank You to tgal For This Useful Post:
there is a quite a few males here. lupus has no boundaries as to who it effects.
at the start of each section, there are "stickys". these are threads that have very useful information in them. they are a good place to start reading.
thank you for caring for your partner. he is lucky to have you.
The Following User Says Thank You to steve.b For This Useful Post:
I was Dx May 2nd 2011 and I haven't learn much about this disease, I wanted to welcome you and glad you had found this group of wonderful people. For you coming here show love and support for your partner that is a wonderful gift to give.
The Following User Says Thank You to lizbond36 For This Useful Post:
A lovely warm welcome to WHL and i'm so happy you found the site, to support yourself and your partner on what to expect where Lupus is concerned, as you'll see from viewing our threads and i'm so sorry for Alan and what you and your family have been through besides having to deal with Lupus now, after what's happened to him.
Your partner Alan as gone through so much shock and stress which as kicked off the Lupus and like tgal said it's heredity as mine came from my parent's but Lupus does thrieve on stress and depression.
I will mention this to you also, Alan is having bloods done and if any come back negative they could possibly be false reading's because Lupus plays with your blood and fluctuates so much it can give off false reading's, so sometimes more bloods do have to be taken to make sure of symptoms.
Mary i'll add some info below for you to understand it more and it will help you get your head around the disease also.
((Hugs to you both)) Terri xxx
Last edited by Peridot20_Gem; 05-11-2011 at 10:08 AM.
The Following User Says Thank You to Peridot20_Gem For This Useful Post:
LUPUS NEPHRITIS SLE
Lupus nephritis is a kidney disorder that is a complication of systemic lupus erythematosus.
Causes Systemic lupus erythematosus (SLE, or lupus) is an autoimmune disease. This means there is a problem with the body's immune system.
Normally, the immune system helps protect the body from harmful substances. But in patients with an autoimmune disease, the immune system cannot tell the difference between harmful substances and healthy ones. As a result, the immune system attacks otherwise healthy cells and tissue.
SLE may damage different parts of the kidney, leading to interstitial nephritis, nephrotic syndrome, and membranous GN. It may reapidly worsen to kidney failure.
Lupus nephritis affects approximately 3 out of every 10,000 people. In children with SLE, about half will have some form or degree of kidney involvement.
More than half of patients have not had other symptoms of SLE when they are diagnosed with lupus nephritis.
SLE is most common in women ages 20 - 40. For more information, see: systemic lupus erythematosus.
SymptomsSymptoms of lupus nephritis include:
•Blood in the urine
•Foamy appearance to urine
•High blood pressure
•Swelling of any area of the body
For general lupus symptoms, see the article on SLE.
Exams and TestsA physical exam shows signs of decreased kidney functioning with edema. Blood pressure may be high. Abnormal sounds may be heard when the doctor listens to the heart and lungs, indicating fluid overload.
Tests that may be done include:
•BUN and creatinine
•Urine immunoglobulin light chain
A kidney biopsy is not used to diagnose lupus nephritis, but to determine what treatment is appropriate.
This disease may also affect the results of the following tests:
•Complement component 3
TreatmentThe goal of treatment is to improve kidney function. Medicines may include corticosteroids or other medications that suppress the immune system, such as cyclophosphamide, mycophenolate mofetil, or azathioprine.
You may need dialysis to control symptoms of kidney failure. A kidney transplant may be recommended. (People with active lupus should not have a transplant.)
Outlook (Prognosis)The outcome varies depending on the specific form of lupus nephritis. Patients may have acute flare-ups with alternating symptom-free periods.
Some cases of lupus nephritis may progress to chronic kidney failure.
Although lupus nephritis may return in a transplanted kidney, it rarely leads to end-stage kidney disease.
Possible Complications•Acute renal failure
•Chronic renal failure
•End-stage renal disease
When to Contact a Medical ProfessionalCall your health care provider if you have blood in the urine or swelling of your body.
If you have lupus nephritis, call your health care provider if you notice decreased urine output.
PreventionThere is no known prevention for lupus nephritis.
Alternative NamesNephritis - lupus; Lupus glomerular disease
The Following 2 Users Say Thank You to Peridot20_Gem For This Useful Post:
MaryS42 (05-11-2011), riverlaken (05-13-2011)
Hi everyone I'm hoping you can all help me or rather help Alan he is in complete denial of his diagnosis he wont "read up" on Lupus he wont join your forum as i have asked him to as i feel it would help if he himself spoke to other people in his position but he refuses he's admitted to me he's in denial and just cant face this disease as he's already suffered so much since his motorcycle accident and his biggest fear is he's going to die very soon i have told him there are people on here who have been fighting Lupus for over 10yrs but this hasn't helped can anyone advise me as to what to say or do to get him out of denial and into a mind set of fighting this or facing this i try to read things out to him that are in your forum but he won't listen i think its denial or depression but i just dont know how to help him .