I was diagnosed with Iga nephropathy 25 years ago through having a biopsy, first sign was my eyes woke up to a cloud of smoke iritis which they couldn’t stop the build up of pressure and turned into glaucoma secondary, over the years I’ve had flare ups as I call them. Feeling unwell, always cold feet and hands pain gout in joints 300mg of allopurinol daily, underactive thyroid 50mg thyroxine, blood pressure tablets 150mg , reflux tablets as always felt I had heartburn, newest tablet is bisoprolol a beta blocker as heart was restless and resting heart was 132 before with weakness down left side. I feel like anything I have it’s linked to inflammation but can’t take any inflammatory tablets due to my kidneys apart from been put on steroids every so often which are a miracle tablet tbh. Taking this all in I feel well. I try and do a short exercise routine daily, eat fairly healthy and i only drink alcohol on very few occasions and a drink could last me hours if out for a occasion,
since covid I slowed down & I’ve started to feel better strangely ( some friends think I’m always too busy as I have 5 grandchildren & work full time ) this is what I’ve found strange the last few years I’ve not had blood and proteins in my urine! I spoke to my renal consultant and he said my kidneys have seemed to have levelled in the last few years but I still have ckd stage 3 42 % kidney function, he said maybe I had a infection 25 year infection which attacked my kidneys.
Does this sound strange ? any advice would be helpful sometimes I think they have my diagnosis wrong what’s others thoughts or advice but they did do a biopsy though.
take care everyone and thank you 😊
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Mary-Louise
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I guess I’m not sure what you are specifically asking. You can have kidney damage, without any “leakage” of any kind. Just because you have no output of any kind doesn’t mean you are “cured” only (most likely) that your kidneys have stabilized. Proteinuria can come and go depending on the underlying cause of your disease. Your kidneys can be diseased yet not output anything via the kidneys. Most folks with stable kidney disease don’t have any output of blood/protein or anything because the disease is stable. Many do not have any type of output from the kidneys as their disease is stable without ongoing damage that causes leaking of protein/or any active output as their disease is stable. Thus most of the time many aren’t leaking proteins that show active and ongoing damage to the kidneys. So the damage doesn’t improve, just the assault on the kidneys is not ongoing. It’s very common for the assault on the kidneys to be “in remission” as most don’t suffer consistent, continued damage to the kidneys. Most suffer damage for just a short period (a one-time issue that causes the lasting kidney disfunction then usually don’t suffer another issue until some new illness activates it or if they live long enough to suffer a potential reactivation toward the very end of their lives. Your doctor explained that your kidneys had “leveled” in the last few years to relate to you that there was no ongoing damage to your body nor was your disease getting worse. This is experienced by most of us and is a “normal” progression of our shared disease. So I don’t believe the diagnosis is incorrect, instead your disease is seemingly progressing like the rest of us.
thank you for your reply ! I just thought it seemed strange after 25 years of always having the blood and protein for it to stop and for it to take all these years to level, I suppose what is normal for 1 person isn’t for another . Yip he did say that to me it doesn’t mean you are cured. Thank you and take care
If I understand correctly, IgA neph is spilling protein so the fact you're not right now is great. As far as feeling better, I think it's caused, in some part, by your slowing down. Our bodies are a fine-tuned machine. I think sometimes we forget that and just push ourselves to keep going. By slowing down you have allowed your body to take a breath and maybe heal some things. JMHO
@joadaer, your remarks that sometimes we push ourselves and should slow down and allow out body to take a breath (paraphrasing) is very interesting and one that I'll remember. Somewhere I was advised to do some exercise for at least 30 minutes a day, so I've been doing that. Also it's good for my respiratory issues. So I was wondering if you include exercise in your daily routine, and if you allow yourself just so many minutes? Thanks for any reply you can give me.
I do a short yoga practice and meditate every morning. I used to take a walk, I set the time for minimum of 30 minutes and rarely went over an hour. Unfortunately, I've not been able to take a walk in several years due to pain when walking. My goal was to walk 5-6 days a week and for the most part I was able to meet my goal. I think exercise is one of the more important things we can do for ourselves. What are you respiratory issues? I have COPD in addition to CKD and diabetes.
Gosh you have been through rough times and continue to fight!
Speak to your consultant, for clarification but it seems to me that thanks to your medication, diet and exercise your IGA Nephropathy is stable; or part remission if you are not spilling protein.
I too, have an autoimmune kidney disorder; avoiding sweets and foods which cause inflammation, will help cause flare ups and keep it stable.
Keep the faith, watch your diet and enjoy your grandchildren which helps on any case.
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