Posted , 6 users are following.
I have IGA Nephropathy and have felt ill for several years, i have a constant headache which won't go away, loin pain, breathlessness and just feel completely exhausted, my GFR is reduced but not particularly low, 55 on average, is this normal or can improvements be made?? I tend to feel better if i completely restrict fat, salt and protein. Many thanks.
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mikewordman richard87134
Posted
Hi Richard,
I suffer from IGA nephropathy like you, currently on dialysis, so I may be able to provide a comparator. In my case, I didn't start feeling the symptoms in earnest until I got down to about 15% GFR. I never experienced headaches and to my knowledge, they aren't commonly associated with CKD. Same thing with loin pain, so it seems to me that those aren't likely related to CKD. However, everybody is different.
As far as breathlessness and exhaustion: yes, those are common CKD side effects but it does seem odd that you are experiencing those symptoms with a GFR of 55, typically they start to come on at GFR <20%. You are certainly on the right track by restricting salt and protein as that will slow the progression of IGA. Apart from that, I'm not sure what to tell you except that I would consider looking elsewhere to explain most of your symptoms. Have you had blood tests done recently? Perhaps your hemoglobin is low?
On a related note, are you on blood pressure medication? If not, you probably will be shortly, in which case I will give a shout out to try Candesartan because in some patients, not only will it keep blood pressure checked but it can also help to reduce protein leakage. This is an added benefit to slow the deterioration caused by IGA. Again, it does not provide this "added" benefit in all patients, but it certainly did in my case and I managed to last 17 years from diagnosis to start of dialysis. You'd have to try it to see if it works for you. Ask your nephrologist about it.
I hope that helps a little. Best wishes,
richard87134 mikewordman
Posted
richard87134
Posted
KenR richard87134
Posted
I do not think I can help much. Before I had my right kidney removed because of a tumour, I had eGFR of 51%. I had no symptoms, walked at least 2 miles daily, plus another 4 twice per week playing golf, I ate a good balanced diet, and do not smoke or drink much - at age 77. Now I am down to 1 kidney and eGFR of 28%, but no severe symptoms and I am increasing my exercise in an attempt to get back to former fitness. For me I think exercise and diet are key! It is hard work but I do feel the benefit!
Good luck,
KenR
MrsO-UK_Surrey KenR
Posted
Richard, with an eGFR of 55, I doubt those symptoms are related.
Did you have the symptoms before starting on Ramipril and Bisoprolol? I ask as blood pressure pills can come with loads of side effects for some people, breathlessness and exhaustion included. I know from experience! Although I also know from experience that uncontrolled high BP can damage the kidneys. As far as Ramipril is concerned, it isn't recommended for people with narrowed arteries leading to the kidneys. An ultrasound can rule that out. Ramipril caused head (temple area) pain and nausea for me. I have just a sole kidney having had the other removed over 60 years ago. Everything was normal until about 10 years ago when I was diagnosed with CKD 3B with an eGFR in the upper 50's. That has reduced to 38 at present.
Have you had a raft of blood tests to rule out other causes for your symptoms, including those to check for inflammation in your body, specifically ESR and CRP? If not then do ask for them. Also those for Vit D and B12.
richard87134 MrsO-UK_Surrey
Posted
KenR richard87134
Posted
I did not have symptoms which I could relate directly to my Stage 3 CKD (eGFR 51%), but I was able to convince myself that they were directly influenced by my High BP, as I regularly took my own readings, and felt unwell with headaches when my BP was high, ok again when BP returned to a normal 130/80. Might be worth checking!
john75639 richard87134
Posted
My sister has IgA, she has recently been diagnosed with fibromyalgia. Which may explain all of her aches and pain. Have you been checked for this medical problem. She also has sleep apnea which may explain why she is tired throughout the day..At one time, she was on oxygen.
Although, don't have IgA, I have two different genetic kidney disorders. I also have sleep apnea and on oxygen.
My 2 kidney disorders are called minimal change and focal segmental glomerosclerosis. My sister does not have this disorder
Have you discussed your sympathy with your doctor. Since I am not a doctor, you should get professional help. Good luck