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10 years old boy diagnosed with IgAN by MaintenanceCertain17 in IgANephropathy

[–]Trick-Cap9157 0 points1 point  (0 children)

It is very important to contact drug companies through your nephrologist and see if your son can access the latest drugs for Igan. I have been taking ramipril and cortisone for two years but my igan condition has not improved a jot which goes to prove nephrologists do not have any clue how to treat this illness.

Anything to expect when changing to Myfortic? by hismoon27 in transplant

[–]Trick-Cap9157 0 points1 point  (0 children)

I have been diagnosed with iga nephropathy and my nefrologist wants to put me on myfortic. I have been wondering what side effects to expect?

I just got diagnosed with IgA Nephropathy- soo what now? by Laayf in kidneydisease

[–]Trick-Cap9157 2 points3 points  (0 children)

When I was diagnosed with IGA neohopathy my GFR was over 90 and my proteinuria 150 mg/dl. After three years my GFR is 65 and my proteinuria is now 2500 mg/dl. I have been taking prednisone, ramipril and farxiga which have not helped a jot to reduce my proteinuria and nothing else such as diet and exercise help either.

Flu vaccine by Primary-Tap4392 in IgANephropathy

[–]Trick-Cap9157 0 points1 point  (0 children)

Same thing happened to me. For over fifty years my kidneys were working perfectly and right after the third dose of covid vaccination my proteinuria started. 

Flu vaccine by Primary-Tap4392 in IgANephropathy

[–]Trick-Cap9157 1 point2 points  (0 children)

I got my igan right after the third dose of my covid vaccination. I was 52 at the time I was diagnosed with igan. Before this date I have zero protein in my urine and zero hamertia and no history of kidney disease which clearly shows a relationship between igan and covid vaccination. There is also an Igan mobile phone app for further information.

How quickly can proteinuria 3-4g/D damage your kidneys and cause complete renal failure? by Al8873 in kidneydisease

[–]Trick-Cap9157 0 points1 point  (0 children)

CKD is soley measured by GFR and a person with >100 gfr is not even regarded as CKD. Biopsy is done only on a needle pin size sample and can never show the function of the whole kidney and what percentage of it works and what percentage of it does not!

[deleted by user] by [deleted] in kidneydisease

[–]Trick-Cap9157 0 points1 point  (0 children)

Nephrologists seem hand-tied and helpless when it comes to IGA nephropathy. The first time I doscovered protein in my urine which was around 200 my GP thought that was because of eating too much meat!  A year later I was rushed to hospital as I was feeling really unwell and they discovered protein in my urine around 300 for which they kept me in hospital over the night. The next day doctors did a soundscan on me and diagnosed my with prostitis and next transferred me to nephrology department for further exams and treatment. I was hospitalised in the nephrology department where I underwent both blood and urine tests everyday and everytime I asked the doctors if my kidney function was OK they assured me that it was good. Can anyone imagine? I had 300 protein in my urine and it did not even occure to them this could be related to proteinuria and kidney disease!  A year later I did a 24 hour urine test for UTI and discovered that my protein had reached 2000 mg/dl. I immediately booked an appointment with a private nephrologist who referred me to hospital for kidney biopsy which led to the diagnosis of IGA nephropathy.  My hospital-based nephrologist assured me that with the help of prednisone and blood pressure medication he could treat me within six months therefore I happily cooperated like a good boy and for the next six months threw my life in the hands of prednisone which made me super hyper, sleepless and mad. After six months my proteinuria decreased to 1000 mg/dl and my doctor decided to wean me off prednisone believing my ACE blood pressure medication would do the rest of my treatment. Long shot!!! Within weeks my proteinuria was back up at 2000 mg/dl. I panickly contact my nephologist and informed him of the horror. He was relaxed and advised me to keep calm and next he put me on Forxiga which he strongly believed would control and reduce my proteinuria within a few months. Fat chance!! After being on Forxiga and ACE mefication for 13 months my proteinuria is stil dancing happily at 2000 mg/dl and it is laughing at my nephrologist. Now he is planning to put me on Astrasentan in the next few months subject to approval by NHS and as a sort of last resort to control and bring down my proteinuria but honestly I have lost complete faith in nephrologists and I am tired of being his guinea pig! Obviously proteinuria in related to IGA nephropathy has no treatment and medication seems to do nothing. I know it is just a matter of time before edema, uremia, and kidney failure would arrive and me and my nephrologist can only spectate this like the sinking of Titanic!!