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IgA Nephropathy - Managing flare ups

Posted by eileen14 @eileen14, Nov 26, 2018

I am having a flare-up with this IgA kidney disease for the past month. Is there anyway you can do some type of dialysis maybe once or twice a week to bring down creatinine and decrease body water. Even the slightest increase of Cr affects me tremendously! From 1.5 to 1.8 and I feel nauseous daily, vomit at least 2 times per week, have no energy, flank pain increases, neuropathy in feet quadrupled and it is hard to breath. Do I really have to get down to 15 GFR before I can “feel better” v
That seems bizarre!

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kamama94 | @kamama94 | Nov 27, 2018

@eileen14 While dialysis temporarily can bring down Cr, I've been told that 15 GFR usually is when dialysis is ordered. This is NOT medical advice, just information: I've also been told that blood pressure-lowering meds and good hydration can help lower Cr. I hope you can consult with your physician(s) or someone on your care team. Berger's disease currently has no cure but can be managed.

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1 reply
eileen14 | @eileen14 | Nov 28, 2018
In reply to @kamama94 "@eileen14 While dialysis temporarily can bring down Cr, I've been told that 15 GFR usually is..." + (show)
@kamama94

@eileen14 While dialysis temporarily can bring down Cr, I've been told that 15 GFR usually is when dialysis is ordered. This is NOT medical advice, just information: I've also been told that blood pressure-lowering meds and good hydration can help lower Cr. I hope you can consult with your physician(s) or someone on your care team. Berger's disease currently has no cure but can be managed.

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My doctor ordered bloodwork and an urinalysis yesterday. Will get results tomorrow. Seven years since diagnosis. When I was first admitted to hospital the doctor surmised that I would need a transplant within 6 months. That is how bad things were back then! Six IV treatments of Cytoxin, high doses of prednisone since the start, 3 types of blood pressure meds twice daily, and numerous other pills. My quality of life is “no quality”! That is what irks me the most. Feeling exhausted and beat up!
Yes, IgA is incurable. Sad fact! I just hope to someday be the person I was before this illness!
Are you living with Berger’s disease also? I hope you are feeling well, thanks for your time!

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1 reply
kamama94 | @kamama94 | Nov 28, 2018
In reply to @eileen14 "My doctor ordered bloodwork and an urinalysis yesterday. Will get results tomorrow. Seven years since diagnosis...." + (show)
@eileen14

My doctor ordered bloodwork and an urinalysis yesterday. Will get results tomorrow. Seven years since diagnosis. When I was first admitted to hospital the doctor surmised that I would need a transplant within 6 months. That is how bad things were back then! Six IV treatments of Cytoxin, high doses of prednisone since the start, 3 types of blood pressure meds twice daily, and numerous other pills. My quality of life is “no quality”! That is what irks me the most. Feeling exhausted and beat up!
Yes, IgA is incurable. Sad fact! I just hope to someday be the person I was before this illness!
Are you living with Berger’s disease also? I hope you are feeling well, thanks for your time!

Jump to this post

Don't have Berger's, at least it hasn't been diagnosed. I cope with stage 3 CKD, diabetes, COPD, CHF, Hypertension, Fibromyalgia and Clinical Depression. Right now most of those are being managed but I hear you about being tired. Sending you positive vibes-feel better soon!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 28, 2018

Hi @eileen14 and @kamama94, you'll notice that I modified the title of your discussion. I did this to distinguish it from another discussion about IgA Nephropathy here: https://connect.mayoclinic.org/discussion/iga-nephropathy-2556ef/ started by @butterfly225

Eileen, how long do these flare-ups typically last for you?

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