Hello all! I’m a 37 years old female who was diagnosed with IgA Nephropathy about 11 years ago. A little bit of my backstory... it was around this time of year back in 2009, one day purpara (blood spots) started flaring up on my lower legs. I saw many doctors and specialists, eventually I ended up in a Nephrologist’s office and was told that I have IgA Nephropathy. My blood results back then was all excellent and my GFR was above 90s, no proteinuria but some RBC in urine (invisible to naked eye). I was simply told that it’s incurable but my case is very mild. I only needed to do blood and urine test annually to monitor. The purpara was prevent for 6 months then it went away (knock on wood) it has not come back. I was not prescribed any medication and was not told to have a restrictive diet. Since I believed it wasn’t serious, I actually did not follow up... I basically lived a “normal” life and ate whatever I wanted. I never felt any symptoms.
Years went by and I went back to the same Nephrologist in 2018 to finally follow up... I never forgot that I have this disease. It’s always been in the back of my mind. I still didn’t feel any symptoms but I wanted to track it again because I was inspired by another life event. I did 24hrs urine test & blood test. This time around I had protein in urine but not at a level where medicine was needed. Still RBC in urine. GFR was in the upper 80s, creatinine 0.77. The results in 2019 was about the same, GFR was 85. I was advised to avoid red meat but not much else other than that. I don’t have high BP, no diabetes, I don’t smoke, don’t drink and I’m naturally thin.
For this year annual lab tests, my GFR came back 69 with creatinine level at 0.92. I was shocked and very alarmed. From 85 to 69 is 16 points. It’s a huge drop! Initially I didn’t see the numbers because since COVID the Nephrologist was doing visits on the phone instead. So at the time of the phone call, I didn’t have the report on hand. They later mailed it to me it was then I saw the numbers. I was just told on the phone that I got worse. It would be best to do a plant based diet. The doctor also thought I wasn’t drinking enough water. Protein in urine was not out of range and again no medicine to prescribe... come back next year for another blood test.
I can’t help to get very worried why the sudden drop. Thinking back I definitely did not drink enough water... also this has been a stressful year to say the least. I started eating chips almost daily (I never used to eat this much), in the summer I ate ice cream every night... I knew I shouldn’t be doing that, I had avoided milk and diary products before. But eating the bad stuff was my way to cope with stress. I also ate take-outs more often... probably once a week. Sleeping hasn’t been great either. However I started dancing as exercise about a few hours a week.
So I suspect the junk food had made my GFR plummet... but it was stable for years without special diet.. is it possible to have a huge drop in a short time? I wonder if the dancing was too vigorous? Because I would sweat a lot. I have immediately increased my water intake to at least 60oz a day. I also started walking/hiking with incline 2 times a week (an hour each time), jump rope exercise about 20 mins 3 days a week. I reduced animal protein, sodium in my diet and cut all chips, diary products, sodas, fast food, etc. It’s hard to completely eliminate restaurant foods but I try to choose the healthiest item. I’m trying to get enough and better sleep too.
I’ll be doing another blood and urine test in 6 months instead of waiting for the whole year. I’m really hoping the numbers would improve ... I can’t help to blame myself and feel very worried I’m on my way to the dialysis at this rate if my condition keeps getting worse
Anyone have similar experience? Do you think it’s possible to bring the GFR back to the 80s and decrease creatinine level? Sometimes I wonder what happened during all those years when I didn’t follow up... did my numbers fluctuate hugely ... but I will never know.
Thanks for reading!! Hope everyone is safe and well.
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BTSFOREVER2021
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HI BTS, You are doing everything you should. The doctors should explain a bit more for you. I would suggest you get some education on CKD to help you understand your condition. There is a lot out there but here is a link to start with. The thing with IGA and most CKD diseases is that it is progressive. The best thing you can do is diet. But the truth is that it will progress. It may be years and years. Your GFR will fluctuate and there may be times when it drops. But just keep working on getting the numbers back up with diet and healthy lifestyle.
First of all, your GFR and creatinine levels will fluctuate based on hydration, time of day as well as lab that the test was performed at. Exercise prior to testing can fluctuate results.
Until your nephrologist tells you that you are heading for dialysis, don't go there as you are doing the best you can.
IGA is a little more extensive than CKD as it is autoimmune; which can flare and calm down. I know as I have Membraneous Nephropathy which is also an autoimmune kidney disorder. The key is to prevent progression.
You are doing the right things by keeping an eye on your diet and drinking water rather than dark colas and I am sure avoiding NASID's such as Advil, Motrin and Aleve.
Like you, I watch my diet carefully; eating no red meats, processed foods or excessive sugar which can irritate the immune system.
I eat a low protein, low sodium ( 1200-2000mg a day) and watch my potassium and phosphorous intakes. I have basically been plant based for several years now, which both my nephrologist and PCP are on board with as I discuss it with them.
I do eat a bit of salmon every do often as it keeps my albumin level up.
Basically, I have a 1/2 cup of Greek Yogurt with Chia seeds in the AM for digestion and eat fresh or fresh frozen veggies; steamed, grilled or roasted are great. I also eat good salads with plenty of onions, peppers and cucumbers with generally an olive oil and vinegar dressing. I avoid tomato as it is potassium high. I also eat Cream of Wheat as it is high in iron as well as gluten free oats, light wheat bread and plenty of fresh strawberries, blueberries and apples. When I do eat out; like you I make good choices and ask for no salt added.
Have you spoken to your nephrologist about your concerns and asked for any dietary suggestions, or a possible referral to a renal dietician who can give you some great food suggestions which are both appetizing and nutritious based on all of your labs; including CBC, calcium, electrolytes, albumin, protein, and your level of protein spilling? Just a thought.
Give your nephrologist a call and mention your concerns to him/ her and let us know the outcome as we are all here to support you.
Thank you Bet for sharing and your supportive kind words! I will come back to update my next lab results. In the meantime with all the efforts I do, I remain hopeful that my numbers will get better
Hi there,I have IGAN as well. There are several groups on FB that are good groups to join. The members are in various stages. There is also a group called Plant-powered kidneys run by a plant based renal nutritionist.
IGAN is a little tricky as I'm sure you are aware, since it is autoimmune based. If you have a cold, illness, trauma, lots of stress, it can cause your immune system to react and irritate your kidneys (I'm simplifying it, but you get the picture). You may or may not progress and lose function with this disease. As Bassetmommer said, it may progress, but doesn't mean it will progress to end stage, and if you do, there are all kinds of strides being made with this disease. Several studies show only about 50% progress to end stage. check out IGAN.org for all the studies going on about it.
I'm glad your doctor recommended plant based. That's actually pretty amazing as many doctors don't know much about kidney disease. Eating less animal protein and more nutrient rich plant based has been a highlight recently though you need to be careful to get the appropriate protein as not all sources are complete. You are doing all the right things. Melatonin can help with sleep as those with IGAN do have lower natural amounts apparently.
In any case, I found out I had IGAN in 2016. In 2013 my GFR was 51 and I had hematuria, but was sent to a Urologist and wasn't sent to a Nephrologist until 2015. I had already cut out gluten and other foods I was sensitive to so it increased my GFR to the 60's. In 2016 I after finding out I had IGAN I worked with a holistic kidney doctor and was able to get my GFR up to 81. Since then it's bounced around up and down from 60 to 80. Sometimes I could relate it to an illness and other times like the recent drop, I am not sure exactly what happened. It has gradually gone up a few points each test. I was eating a higher protein diet per a dietician I was working with, so I think that may have been an issue. I've since reduced it. We shall see. My point is that you can increase it and many people in the plant based group have done just that. Even those in the lower stages preparing for dialysis have been able to hold off going on it.
Not having your protein out of range is huge! That's great. I think with your new diet, sleep and relaxation techniques, you will see a difference. Don't beat yourself up. None of us has eaten or taken care of our bodies perfectly. The one blessing I've found with this disease is that I am in better shape, and am more conscious of what I put in my mouth than when I was younger. The more you can build up your immune system, the better!
Thank you so much for sharing your experience and suggestions! I have joined the FB group. You really helped me think more positively. I wish you the best of luck and good health! Take care
Hi BTSFOREVER2021, No thanks ever needed! I am happy to support and share.
Zazzel gave you a super explanation as to what to be aware of, her experiences and groups which share IGAN.
I agree with her that keeping healthy and away from colds etc. are key points as they, as well as stress can play games with your immune responses and the medications can irritate your kidneys.
Speak to your doctor/ dietician about plant based diet and clear it with them as everyone is different and you want to plan a lifestyle which is best for your needs.
I have been plant based for almost 4 years now and love it. Based on my labs I am allowed beans which had kept my albumin in the normal range.
I agree with Zazzel; your protein spilling is not terrible- one more blessing.
Set up a medical action plan with your team and go forward.
Until your doctor tells you that you are heading to dialysis or there of, please don't go there.
We are always here to support. If you would like to Private Message us, tap on our icon in the context of post and it should bring you there.
Looking forward to hearing good news in the future.
I was diagnosed with IgAN in my early thirties, but I started showing symptoms in my late twenties, like all over body rashes and developed high BP. I was stable for a few years after diagnosis (via biopsy), was on BP meds, and starting seeing an acupuncturist regularly and renal dietician regularly. Unfortunately, one day, my GFR dropped dramatically and creatinine increased to the point of ESRD. It was very sudden, and to this day, there is not one thing I can pinpoint as to the cause.
All of the replies have pretty much summed up this rare and rather autoimmune disease. There really isn’t enough research around it, this no cure and no real treatment plan except to watch your diet, stay hydrated, get enough sleep and try not to stress too much. Everyone has different tolerance/sensitivity levels to each of the aforementioned factors. It’s really about taking care of yourself the best you can and knowing how your body reacts to certain foods and stressful situations.
The promising news is that there are more and more raising awareness, and there is currently a clinical trial for a pill that might help prevent progression of disease. I’d encourage you to join some groups and stay aware of the developments. Also, see another nephrologist for a second opinion. I’ve seen several and some are more conservative or more progressive in their approach to medicine. Find what works best for you. Good luck!
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