Immunotactoid glomerulonephritis

Posted by abrunslori @abrunslori, Aug 12, 2019

Hi. I was recently diagnosed with a Sato immune condition and was wondering if there is anyone else out there it also suffers with this disease or any information.

Hello @abrunslori, Welcome to Connect. I was not familiar with your diagnosis so did some search and found a few sites that I'm hoping may be helpful.

Immunotactoid glomerulopathy
https://rarediseases.info.nih.gov/diseases/12048/immunotactoid-glomerulopathy
https://www.malacards.org/card/immunotactoid_glomerulopathy

I'm tagging a fellow mentor @gingerw as she has discussed glomerulopathy in a post and may be able to share some information with you. Did your doctor suggest any treatments or options for your condition?

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@abrunslori I also found these articles that may offer some help.

Successful treatment of recurrence of immunotactoid glomerulopathy in a kidney allograft recipient
https://academic.oup.com/ndt/article/15/6/897/1858540

Immunotactoid glomerulopathy: clinicopathologic and proteomic study
https://academic.oup.com/ndt/article/27/11/4137/1813101

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@johnbishop

Hello @abrunslori, Welcome to Connect. I was not familiar with your diagnosis so did some search and found a few sites that I'm hoping may be helpful.

Immunotactoid glomerulopathy
https://rarediseases.info.nih.gov/diseases/12048/immunotactoid-glomerulopathy
https://www.malacards.org/card/immunotactoid_glomerulopathy

I'm tagging a fellow mentor @gingerw as she has discussed glomerulopathy in a post and may be able to share some information with you. Did your doctor suggest any treatments or options for your condition?

Jump to this post

Thank you for tagging me in this conversation. @abrunslori, I was diagnosed with Collagenofibrotic Type III Glomerulopathy in March 2015, and have been monitored closely since then. My GFR is currently 33%, a drop of only 6% since medically retiring in Oct 2015. Like you, the drs are monitoring my situation closely, as there are some other things also interfering with stellar health. Like @johnbishop asked, what are your doctors saying for you to do? I follow a low protein diet, and follow a renal diet to help my kidney function keep in a gentle-to-no slide downhill.
Ginger

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@johnbishop

Hello @abrunslori, Welcome to Connect. I was not familiar with your diagnosis so did some search and found a few sites that I'm hoping may be helpful.

Immunotactoid glomerulopathy
https://rarediseases.info.nih.gov/diseases/12048/immunotactoid-glomerulopathy
https://www.malacards.org/card/immunotactoid_glomerulopathy

I'm tagging a fellow mentor @gingerw as she has discussed glomerulopathy in a post and may be able to share some information with you. Did your doctor suggest any treatments or options for your condition?

Jump to this post

Hi John. Thanks so much for the information. Anything I can get a course would be helpful. No there is no set treatment for this disease apparently. The end results will be kidney failure. Patience in past have all been different no one has the same symptom or any consistency to the disease. The only suggestions of course are steroids chemotherapy and course kidney replacement. I am starting a more holistic approach with some herbalism and more alternative medicine

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@gingerw

Thank you for tagging me in this conversation. @abrunslori, I was diagnosed with Collagenofibrotic Type III Glomerulopathy in March 2015, and have been monitored closely since then. My GFR is currently 33%, a drop of only 6% since medically retiring in Oct 2015. Like you, the drs are monitoring my situation closely, as there are some other things also interfering with stellar health. Like @johnbishop asked, what are your doctors saying for you to do? I follow a low protein diet, and follow a renal diet to help my kidney function keep in a gentle-to-no slide downhill.
Ginger

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Hi Ginger. Sorry to hear of your disease. I to follow a low protein low potassium low phosphorus no red meats processed foods dairy grains salt etc. it seems like I've carried this disease for 10 years however was just diagnosed a year ago after kidney biopsy. As I message John I'm taking a more holistic approach with some alternative medicine and some herbalism. Hopefully that'll help me to sustain a longer. Of time until kidney failure comes knocking

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@johnbishop

Hello @abrunslori, Welcome to Connect. I was not familiar with your diagnosis so did some search and found a few sites that I'm hoping may be helpful.

Immunotactoid glomerulopathy
https://rarediseases.info.nih.gov/diseases/12048/immunotactoid-glomerulopathy
https://www.malacards.org/card/immunotactoid_glomerulopathy

I'm tagging a fellow mentor @gingerw as she has discussed glomerulopathy in a post and may be able to share some information with you. Did your doctor suggest any treatments or options for your condition?

Jump to this post

Thanks again for the links John.

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@abrunslori

Hi Ginger. Sorry to hear of your disease. I to follow a low protein low potassium low phosphorus no red meats processed foods dairy grains salt etc. it seems like I've carried this disease for 10 years however was just diagnosed a year ago after kidney biopsy. As I message John I'm taking a more holistic approach with some alternative medicine and some herbalism. Hopefully that'll help me to sustain a longer. Of time until kidney failure comes knocking

Jump to this post

@abrunslori You're on the right track! As a patient, there is a lot we can do to slow the progression of this type kidney issue. Be gentle to yourself, and please continue to post as you see fit. When I medically retired in late 2015, my GFR was 39. My last set of labs in June 2019 show GFR at 33, a lot due to the reduction of stress in my life, and watching my diet closely.
Ginger

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@gingerw

@abrunslori You're on the right track! As a patient, there is a lot we can do to slow the progression of this type kidney issue. Be gentle to yourself, and please continue to post as you see fit. When I medically retired in late 2015, my GFR was 39. My last set of labs in June 2019 show GFR at 33, a lot due to the reduction of stress in my life, and watching my diet closely.
Ginger

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Ginger that is so awesome!! Good for you and hopefully will continue on the same slow healthy path. It took me awhile but after a lot of self-education and trial and error I agree with the low-stress very mindful and meditative lifestyle. Good luck to you if I find anything that seems to be helping more I'll be sure to keep you in the loop

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I do have one question if I could for your Ginger. And they wanted you or have they had you on steroids at all. Or what medication are they suggesting for you or are you taking

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@abrunslori

I do have one question if I could for your Ginger. And they wanted you or have they had you on steroids at all. Or what medication are they suggesting for you or are you taking

Jump to this post

@abrunslori I take a blood pressure medication to keep my BP in good range, as that is important to not stress the kidneys. Also, a diuretic [furosemide] every day or every other day as I see fit. And I take a medication for gout, to keep my uric aid from building up. I follow a careful renal diet [limit protein, no dairy, low-to-no potassium, low phosphorus, no purines because of the gout, low sodium]. I limit my sugary foods. Exercise as my knee will allow me, usually walking. No steroids for me, if possible, because diabetes runs in my family and I do not want medical-induced diabetes.
Ginger

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@gingerw

@abrunslori I take a blood pressure medication to keep my BP in good range, as that is important to not stress the kidneys. Also, a diuretic [furosemide] every day or every other day as I see fit. And I take a medication for gout, to keep my uric aid from building up. I follow a careful renal diet [limit protein, no dairy, low-to-no potassium, low phosphorus, no purines because of the gout, low sodium]. I limit my sugary foods. Exercise as my knee will allow me, usually walking. No steroids for me, if possible, because diabetes runs in my family and I do not want medical-induced diabetes.
Ginger

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Thanks ginger for getting back to me. Sounds like we have a lot of the same symptoms and follow the same protocol. I found out I'm allergic to the diuretics so I tend to drink a lot of lemon zest water. I do have some dairy once in awhile in yogurt or cheese and mayo so that a glass of wine now and then would be okay. But all my nephrology East restricted me from really was red meat and salt. I've just done a lot of self-education hopefully try and sustain a longer period before dialysis. I am sure like you I just try to be mindful of every day and take everything as it comes. But thanks againand if I find any great information I will sure pass it your way!!

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