glomerulonephritis iga and chemo?

[Becks26]

Hi,

I'm 26 and after a kidney biopsy a week ago its been confirmed that I have got glomerulonephritis iga nephropathy. My consultant advised that if the deterioration of the glomeruli starts to happen very quickly then treatment is with chemo. Just wanted to ask if anyone has ever experienced chemo in these circumstances before?

Thanks x

[Zazzel]

Hi Becks,

Sorry to hear about your diagnosis. It can be quite a terrifying diagnosis, but once you find out more information, the panic fades and life goes on. I also have IGA Nephropathy. Diagnosed last fall. I'm 50 so it's probably been developing for many years. This form of chronic kidney disease can go on for many years without getting worise quickly or it can go into remission.

I have heard of chemo being used as well as a several drugs. I am currently taking lisinopril for the high blood pressure I developed since being diagnosed with IGAN. It apparently not only lowers blood pressure, but also helps with proteinuria.

Do you have microscopic hematuria (blood in urine that you can't see) , gross hematuria ( blood in urine you can see) or proteinuria ( protein in urine). If you don't know, these are all things you should ask your doctor about and go along with IGAN. Also get a home blood pressure monitor and keep track of it. A year ago I had naturally low bp, but it increased over the year until I needed meds.

Another thing you might want to consider is a holistic approach. I'm hoping they advised you to cut out processed foods, reduce your sodium intake and don't eat high amounts of protein, exercise and reduce anxiety. Those are the basics mainstream medicine might tell you. However, there have been a few small studies suggesting eliminating gluten and/or dairy can reduce proteinuria and control IGAN so you don't get worse.

Here are a few:

ncbi.nlm.nih.gov/pubmed/231...

glutenfreeworks.com/blog/20...

diva-portal.org/smash/get/d...

The last study listed also indicates that someone with various hypersensitivities to foods might experience an increase in kidney function if they control their diet. This is my case. I have multiple food intolerances. I was able to determine them by taking the ALCAT test. Since inflamation is a big factor in IGAN, reducing as much inflamation in the body is the main goal. Any food you eat that causes an allergic or intolerant reaction, causes inflamation. I was able to take my GFR from 52 to the 70s by controlling my diet. It did fluctuate up and down during that period. since then, I added supplements and further reduced Omega 6 foods and oils and increased Omega 3 which also helps control inflamation. You might check out holistic-kidney.com for more information on this topic.

Even with all of my food controls and my increased kidney functioning which went up to the low GFR80s after adding supplements and Omega 3, I still developed high blood pressure. Since controlling that, my proteinuria has decreased to normal range. Not sure if this will last forever, but so far so good.

Just letting you know there are options. Feel free to private message me if you would like.

[Becks26 in reply to Zazzel]

Hi Zazzel,

Wow thanks for your detailed response! Very helpful indeed, so glad you've sent me those links and given me the info on types of diet restrictions. I'm due to see my nephrologist in 2 weeks to discuss treatment options so I imagine he will give me all of the details regarding diet etc then too, in the mean time I'm going to read through all of the things you've given me!

With regards to hematutia, sometimes it's more visible than others but mostly I can't see it but the amount has increased a lot recently. I also have proteinuria too and my kidneys are leaking protein which I imagine doesn't help either!

I'm on a high BP medication (cannot remember for the life of me what it's called) as it was getting upto 172/117 on my 24 hour BP monitor and I check it every day with my home monitor now

It'a really good to hear how you've managed to turn your function around by diet changes I had no idea it would make such a big difference! I'll definitely look at the holistic side too, thank you for the info on that

I'll definitely private message you, good to speak to someone that's so knowledgeable on the subject as I know literally nobody with kidney problems so don't have many people to speak to that understand all the jargon and medical terms!

Speak soon and thank you

X

[Zazzel in reply to Becks26]

You are quite welcome. From what I recall my doctor saying was that those who had gross hematuria had a better prognosis rather than just microscopic. In any case, don't expect your doctor to give you much in the way of diet. My nephrologist suspected that my food intolerances had something to do with it, but couldn't give me any diet advice nor suggest a dietician to help me as she said the renal dieticians were for end stage and dialysis patients. You will have to do that research on your own or work with a holistic doctor to get food and or supplement guidance.

Do check and see if you are on lisinopril /Zestril as it is known to help with proteinuria. If you aren't, ask your doctor about it and why you weren't put on that instead.

I'm glad you are monitoring your bp at home. That is so important and a great way to manage it.

I'm sorry you have to go through this at such a young age, but you will find lots of people on here who have had CKD for many, many years and are getting along just fine. I have found that this disease has actually been a positive in my life. It has forced me to eat far healthier, relax more ( I now meditate and do yoga), and in general live a more positive life.

[mjaneven in reply to Zazzel]

What type of supplements did you add?

[Zazzel in reply to mjaneven]

The supplements I added were specific to my needs and you would need to discuss with your doctor regarding any supplements with your condition and other medications you are on, but here is the list of what I take

Bromelain

Glycine

Vitamin C

Zinc

Vit B Complex

Astragalus

Slippery Elm

Calcium Citrate

Magnesium

Flax Oil

Melatonin

[Restlessbutgrateful in reply to Zazzel]

Hello. This is so very interesting. I also suffer from glomerulonephritis and am currently spilling protein in my urine and was told if my levels are still high at my follow up appointment, that I will have to start chemotherapy treatments that I definitely do not want to take! I would love to get some information from you. I don't know how to send you a direct message but maybe you can contact me at either my email address of [e-mail] or on Facebook (@Glam-Ma GiGi)

Thank you so much!

[Zazzel in reply to Restlessbutgrateful]

I sent you a private message. On your home page, look to the top. Click on the little "talk bubbles" and you will see a message from me. Delete your message above with your emails by clicking on the little arrow next to "More" and choosing delete. You don't want your info hanging out on the web like that. You'll end up getting a lot more spam.

[rabbit01]

Hi. I am 50 and have suspected IGA. I am not on any medication as I was already at 18% egfr when diagnosed with ckd 2.5 years ago. Due to my very low kidney function the docs advised against a biopsy for me hence they can only suspect I have IGA. Sorry to hear that you are going through this. Hopefully they have caught your condition early enough to treat. This forum will provide good support and advice.

[Becks26 in reply to rabbit01]

Hi rabbit01, hope you're doing well! The biopsy wasn't the nicest experience I must admit, I think being awake and the thought of it all makes it worse though. Hopefully I won't have to have them too often! I've read a couple of your threads and you have some of the same symptoms as me, hope you're feeling well and thanks for your support