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Behind the Mystery: IgA Nephropathy
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- เผยแพร่เมื่อ 18 ส.ค. 2024
- Although it manifests in the kidneys, most scientific studies have found that the cause of this serious kidney disease begins in the gastrointestinal tract. As the disease progresses, up to 50% of patients end up at risk of developing end-stage kidney disease and possible dialysis within 10 to 20 years.
The challenge with IgA nephropathy is that most patients don't actually know they have the disease, and most are diagnosed by chance. Currently, there are no approved treatment options, and everybody in this disease advances at a different level.
There is a significant unmet need in the treatments offered to patients and a need to target therapies at the very beginning of the disease, which is the production of abnormal IgA. The Balancing Act met with nephrologist Jonathan Barratt of the University of Leicester in the UK to learn more. Plus, we meet with a patient, John, whose diagnosis came as shock but is working to help others through his work at the IgA Nephropathy Foundation.
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Was just diagnosed with IGA. Had a really bad stomach flue that my daughter brought home from daycare, doctor took a urine sample and found protein and microscopic amounts of blood. Ended up having a biopsy and they found I have IGA. My kidney specialist says I am very early stages and still have full kidney function, I'm turning 36 soon. Scary to think of when you have kids and don't want to leave them without a dad.
Did you have to take any steroid ? I have the same problem like you . I have blood n protein in urine and my kidney function is normal . The doctor asked me to do bisopy to confirmed it’s an IGA
@@AmyChen-py3jj no steroid for me, they went right to the biopsy, I just went for my 6 month check up and still normal kidney function. Do not watch any videos of the biopsy before you get it done, I made that mistake and it freaked me out lol
As long as you don't have the high blood pressure to go with iga it shouldn't mess with your kidney function. Sadly I reached kidney failure and now on dialysis
im gonna be a part of a clinical trial next year here in s.korea and i hope and pray that the result will turn out great!
What clinical trial are you enrolled in? How are you feeling?
Ma'am please reply. What medicines are given to you during the clinical trial. What response your kidney has given to it.
What's the outcome of the trial?
Good luck!!
@Purdue Pharma so ,it's all about gluten free in that article, there's no panacea for IGAN currently, unless the disease goes into remission or miracle happens, I read about patients who got rid of it naturally by changing thier lifestyle to healthy one, good balanced diet and exercise .but still doesn't work for everyone unless a cureall is found or the course of the disease differs from one person to another.
@Purdue Pharma @Purdue Pharma Tbh with you, when I was diagnosed my nephrologist didn't give me broad explanation about that disease, but I searched it for ma self and educated ma self about ma condition and the disease, the drugs you referred to I'm by no means support that bcz they may lead to other health issues and make things fester, I read about the gluten free diet back in day I was inquiring, I know it's a main cause bcz gluten can be associated with many autoimmune diseases ,what I'm trying to say about lifestyle isn't a doc advice it's like when you're told there's no cure ,it's better one must take his health seriously and start researching, the net is good source and connect with healed patients. I'M not completely dismissive of the link of the article you provided, rather I benefited from it ,but what I mean there's no ultimate cure but control the progression.thnks for the link for the podcast I'll tune to it later, Have a nice day too : )
IgA Nephropathy patient, on mya 2nd year of my 2nd kidney translant. First one lasted for 10 years.
Does iga come back after transplant?
Today i was diagnosed with IgA Nephropathy. I am 29. I only started to feeling pain 3 months ago in the middle of the night. Both of my kidneys are around 50%
I’m 33 my kidneys are less than 7% IgA found out 6 months ago.
I’m 28
I am 34 after a hypertension problem, and my urine test comes with blood and protein. After that, they found 3A phase kidney disfunction. After a kidney biopsy test, they came up with IGA disease, which scared me with no cure. They have only given me medication that I took before for hypertension, vitamin D3, and cholesterol remedy. These 3 medications will help or not, I will see. I need your prayer.
How is it going for you now? Mine seems to be a similar case
Me too
I am 37 years old man. I have been on dialysis for 10 years and still going. I was diagnosed with iga in 2011. The clinical trail going on right now is called LNP023.
@Purdue Pharma how? Your link directs to a gluten free diet effect on people with iga Nephropathy
@Purdue Pharma Sir ,in IgA nephropathy it's the creatinine and renal failure that's significant markers
Serum IgA is not an indicator of the disease progression as they are immediately deposited in kidney
IgA nephropathy has an associated to coeliac but not always
Hence gluten free diet may aid in symptoms but cannot stop progression to renal failure
What's the result of trails
Can we know more of this successful trial?
I was diagnosed with iga at 13. I was very sick when I first was diagnosed but it got better slowly and I was able to live normally for a number of years. I'm now 27. 14 years after my diagnosis I'm having problems again. Always so damn tired and just don't feel right. I'm scared. Honestly
💔,I feel you on that ,but don't give up on yourself, there's still hope for cure or maybe remission,I believe in the power of positivity and struggle despite pain.I was diagnosed when I was 23,it was a bit hard to accept it,but with the passing of the time I came into term with it,I'm 26 now,still no symptoms at all which my doc says your condition is better than others ,with tablets my protein intakes dropping between500 mg and 250 mg,after it was 2000mg,I wanna hit 150 mg ,this happened bcz I changed ma lifestyle. But after some months of depression of how to do,I decided to change ma lifestyle, I eat rightly, I exercise daily and this helped ma mental health to improve and maybe just a little changes in our lives could turn the tide and work wonders. Cheers !
Dear where you get your treatment because I have the same disease......pls tell me
@@hafizjamal1606 visit a nephrologist, and study your case well,know your illness, via research on the internet, just to know how to manage your case ,and nutrition as well,eat healthy food,exercise regularly, sleep well ,stay away from junk and salty food bcz their is a risk of high blood pressure, hope that helps, enjoy the moment and don't worry much about the future .stay blessed.
Wow I’m 27 and was diagnosed at 12, so crazy because I’m also going through the same thing.
God will bless you !
Please upload videos more about this medication research so that it can be cured.
I am 63 and didnt know I had IGA and had good GFR for over 10 years. After getting the covid vaccine my GFR dropped by 50% and I had symptoms of IGA. No more vaccines for me.
Stay away from immunosuppressant it also creates more problems and more medications. It never ends.
May I ask which covid vaccine you got? Was it Pfizer or Moderna?
@@Oatmealxxx Moderna
Same for me after phizer
I developed it without any vaccine so they are spraying this in the air or putting it in the food!
I've had Iga nephropathy for 10+ years. My theory is that iga nephropathy is just a part of our auto immune disorders. I'm also allergic to all pollen and I'm undergoing immune therapy for it. Also I'm allergic to peanuts. When I cut out the peanuts the blood in my urine and my stomach pain dissappeared. Get tested for allergies!
Hi tearsbeers, I have IgA and my creatinine is slowing increasing over the years. It’s been 3 years since diagnosis and my creatinine has bumped from 1.2 to 1.7. I am worried about the increasing levels. Any tips to help out?
@@vashisthapatel get the blood pressure under control. Lisinopril is a good drug to take. Also eat plenty of fruits and veggies.
Get tested for allergies
@@tearsbeers thanks a lot! I take Telmisertan 40mg (ARB) every day to control blood pressure and proteinuria. They are both stable for now but the creatinine keeps on slowly rising. It hurts to know there is nothing I can do about it! I want to get tested for allergies now and also try a lectin free diet to see if that helps. For the last few months, I have turned completely Vegan and that has helped tremendously in controlling my diabetes, cholesterol levels. They are both fine now without medication. Thanks
@@vashisthapatel Hey man. How are you doing now? Did you manage to bring your creatinine levels down??
@@KurokishiYT my proteinuria is definitely under control within normal range. Blood pressure also okay with daily cardio and eating habits. I keep my BMI around 23. Only concern for now is my creatinine which is still around 1.6. I have definitely benefited from tearsbeers advise - get tested for allergies. For me, stoping all dairy products and going vegan has done wonders. Also exercise almost every day and keep my BMI around 23. Hope this helps you. It is difficult to let go a lot of good food options but can’t see my kidneys suffering so have been sticking to this diet for over 6 months now. Let me know your experience and if there is anything you wish to share.
Please do let us know about the successful clinical trial?
I have it as well but in both kidneys
What is the clinical trial of IGA Nephropathy. I want to participate
I'm a kidney patient myself. When iga was discovered inside me it was already so bad to the point where I went straight on dialysis. And I was/am in end stage renal failure.
Wow. I here that a lot that people don’t find out until kidney failure. I was tired all the time and didn’t feel right. Also I had bad headaches. But I didn’t think anything of it. They knew something was wrong but ignore me. Tried to get a lawyer. Maybe if I went into kidney failure maybe that would be good enough for them. I do have kidney damage though
💔
@@misslaylay2006 I had the exact same symptoms and experiences. I would always try to sleep and had bad migraine. Had no energy. And I went to go get looked at and they were very close to sending me home. Said I was in front of a screen too much. They said if they would’ve let me go about 3 days later I would’ve died. My creatnine when I went into the hospital was 16.
@Purdue Pharma stop providing misinformation
@@altonmarsh5569my story is almost identical identical to yours. I went into ICU with massively high blood pressure, almost died. Was at end stage already, had no idea. I’m now two years tx. Hope my kidney stays strong and healthy ❤
Hey Can Someone Guide Me How Should I Enroll My Mother Suffering With IgA Nephropathy In A Clinical Trail?
Thanks
Am a patient of IGA. 45% damaged. Currently things are under control. Recognized on 2018. Its been 3 years now. Am fine as per was just 23 aged during that time. Any idea how long my kidney will work smoothly?? Now my kidney is working well, all results are also fine.
And wat will be the best diet to avoid failure??
Hi vishnuraj, I'm also suffering from iga. 60% damaged
@@krishnakumar-cr7fy take care well brother
@@DeepakRajput2000 now things are under control. Have to be too much strict with diet.
@@DeepakRajput2000 bro, are u patient or any of ur close one is a patient. ? And any thing u wanna ask, pls do it here na. So it will help others too. Plzz don't feel bad, i usually don't give numbers to anyone, thats y
@@vishnuraja.s5566 hi bro, i'm 20 years old. I was diagnosed with Ig A 2 months ago. (GFR 100)(24h protein 2.2 grams) (creatine 0.9) I've been using steroids and blood pressure medication for 2 months. Will this disease go away?
How are you now?
How did you receive treatment?
thank you..
Doctor please I want diet plan. Reason blood pressure my high and my age 41
How i can join clinical trials. My iga is accidently caught at very early stage
@Purdue Pharma It says that ". The data of this study indicate that a gluten-free diet can modify SOME immunological abnormalities in a group of IgAGN patients, reducing levels of IgAIC and IgA to dietary antigens." BUT:
The clinical course DOES NOT SEEM to be favorably influenced, since a relentless PROGRESSION towards renal failure was observed."
No is my well but I want diet plan only I want to diet plan please this❤❤❤
Waiting on my 2nd transplant because ot iga.
Wow.
How long the first kidney lasted
Things have change for me . I got put back on transplant list then my kidney shot back up to 25% and been staying there so not on list now.. I'm 2 year post
@@craigwinter2802 how long did the first one last?
I just had my first transplant on Jan 6. Doing good right now
A month ago im diagnosed with IGA kidney failure and heart failure. So my doctor started me on prennedisone 60mg. I had no knowledge how evil this drug is. I blew up and i was going crazy my wife was so worried for me she said imma call 911 bcuz your not yourself.
I'm 23 and with iga kidney failure on dialysis. I took prednisone for awhile and it made me very amped up and unfiltered with anger issues. It's very strong. Glad I'm off it.
did it help improve renal function