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IGA Nephropathy
Anyone have any insight / education/ experience with this disease. I am a 34 yr old female, I was diagnosed in 2012, After several misdiagnosed urinary track infections. I started showing large amount of blood in my urine along with other red flags through my blood and urine. A kidney biopsy concluded that I had IGA Nephropathy. I currently have my urine and blood tested once a year by my primary care physician. I have been referred several time to Nephrology, but have failed to be excepted in only by resident or Pa., which I decline. With this type of disease I feel that as thing progress I would need to have a good relationship with a highly qualified Doctor. So, I will keep searching . At this point my test levels have remained good and I have shown no alarming symptoms.
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@shirley2216 I’m unfamiliar with IGA but I’m also anticipating a kidney transplant at some point. If your husband has a living kidney donor the transplant surgery can be planned/scheduled for optimal results for everybody involved. If it is a deceased donor, other factors need to be considered such as when and where the donated kidney becomes available etc. Either way your husband should have a coordinator that will help prepare you for your situation and pave the way.
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3 ReactionsI would like to share the following article with you-
My Second Chance – Savannah Mullis
— https://connect.mayoclinic.org/2016/10/12/my-second-chance-savannah-mullis/
A few things, I was diagnosed in May with IGA Nephropathy. My Nephrologist has me on a low dose Losartin and I’ll do a 24 hr urine catch in 2 weeks to see how it’s working. I can’t have a high dose as I don’t have high blood pressure which is the common use of Losartin. As far as not seeing a resident or PA- I would go see them. Many offices in Illinois schedule you with the PA as a new patient then if needed bring you back to see the Dr. At my primary care I see the PA all the time but if I need to see the Dr. I can get right in. Just my experience I thought I’d pass on.
My husband has IGA and was sadly not diagnosed until he was already in end-stage renal failure. Thankfully his sister was a perfect match donor and we are almost 6-month post-transplant 🙂 It is my understanding that had it been caught earlier he could have been put on steroids or something else to avoid IGA "flareups" that would further attack the kidneys and therefore prolonged the life of his kidneys. Is this something that has been explored for you?
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1 ReactionGo see the PA, would be the best place to start. You need medical help. My GP has you see the PA as a new patient, then after tests are ordered you make an appt with him. PA’s are full of knowledge and experience. I have IGA Nephropathy diagnosed in May and my Nephrologist put me on 25mg Losartin. It’s a high blood pressure pill, which I don’t have but it’s a beta blocker that stops the protein. My Protein in urine has gone from 970 to 280 in about 4 weeks. I was told it will go lower once I’m on Losartin longer.
Good luck with everything!
IMHO, you need more medical attention. Find the best Nephrologist you can with experience treating IgAN patients, and escalate through your insurance provider, if applicable, until you find that doctor, even if you need a referral to get there. I was diagnosed with IgAN and HSP vasculitis via renal biopsy in 2008 after tests showed very heavy proteinuria. My local Nephrologist in Atlanta was experienced but in my case referred me to an IgAN expert at the Mayo Clinic in Rochester, MN. I started treatment right away. I won't mention the meds or tests used because every case is unique. It took awhile to get my proteinuria and kidney function under control and my IgAN has been in total remission for 10+ years. My annual blood and urine tests have been excellent. Don't stop until you get the medical attention you need. Best wishes!
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3 ReactionsDr has also put me on Losartan 1/2 dose of 25mg. My problem is my BP runs low and taking BP meds drops it down to 85/50. This is way to low. But I will talke to doctor to see what I can do to up my BP. I have to drink broth and eat chips to get it above 100.