I would like to share my thoughts over my treatment, and kindly ask you to share yours if I am being paranoid or not. Actually due to relocating right when I found out that I have FSGS, I am stack between two very different approaches.
Last year in April, I learnt that I have kidney disease, and back then I was living in Turkey. I spoke to three different doctors, all of them agreed on starting immune-suppressive medication. I have primary or genetic FSGS - I am still waiting for genetic results, so right now we dont know the root cause- and doctors automatically jumped on using immune-suppressives. Well, I had 1.3 g/day proteinuria, and creatinine around 1.7-1.8.
But I relocated to Denmark before starting to my treatment in Turkey, and started my treatment in Copenhagen instead. Here doctor just kept me on ACE inhibitors, and did not give me anything else. Over 7 months my proteinuria has elevated to 1.9 g/day, but my doctor said that we might see deviations, important thing is to observe the trend. And she said that she is not keen on using immune-suppressive on FSGS, because for my case, it may not be helpful. The reason is that I dont have high proteinuria as primary FSGS patients, and albuminaria in my blood is in average. Apperantly these are the two main criteria for FSGS patients. And since these are under control, she does not think that immune-suppressive will be helpful on my course.
My confusion point is that... Here, in this country, doctors don't prefer to load medicines to patients. They target to keep medicine amount as low as possible. Whereas in Turkey, you take medicine for you disease, and additional medicines for the symptoms. We take pills in a crazy amount. Many times this is overloading the body, but maybe sometimes it is what you need? I am not sure.
So if I would be in Turkey, I would be on a totally different medication. But here my doctor takes it realllllly easy, maybe too easy. I kinda agree with my doctor, because you try to keep proteinuria as low as possible. But since I am not in a nephrotic range, immune-suppressive medication might be unccessarry. What confuses me is that since I know doctors here dont like prescribing pills, does that mean I should be prescribed only ACE inhibitors? I dont know!
Please share your opinions and ideas with me. I am so lost in between.
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tas1kubra
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I think a lot of time doctors over medicated but you are right sometimes we need it. But remember a lot of medicines are filter through the kidneys so that could be reason for less medication. You said you are on an ace inhibitor and I do know that is suppose to help with kidney problems . I would just ask the new doctor if I take this medication how would it help me or how would it hurt me why can’t I take this medication questions like that .
Confusing at best, the delimema is who is correct? I can only offer my opinion. It is common practice to put CKD patients on ACE inhibitors to "effectively reduce systemic vascular resistance in patients with hypertension, heart failure or chronic renal disease." pubmed.ncbi.nlm.nih.gov/887...
In other words, it is kidney protective. The issue for now I see is do you need the other medication? I think the doctor is correct that they want to see a trend before treatment. Once on an immunosuppressant drug, it may help with the kidney issues, but there are other side effects you need to monitor and they can be serious. So waiting makes sense to me.
Thank you Bassetmommer. Gosh, waiting honestly kills me. I will visit the doctor in 10 days, and it has been almost 3 months since my last check up. I am so afraid, and trying to read my body signs, sometimes I go crazy.
But the reason that I continue with this doctor is that I agree with you. I never liked the idea of taking immune-suppressives. I am really suspicious of the stress on my body caused by those medicines.
Thank you for sharing, I will read this report in detail.
On the other hand, before even reading it, I kinda agree with you. I dont know, maybe observing that many kidney patients are treated with immune-suppressives, I wonder if I am missing something or not. Because my bias is that doctors here really dont prescribe you medicines. Not only diseases like this; when you have flu or even break your arm, they dont like prescribing you.
It is actually primary cause of ESRD among CKD patients. Its either primary (meaning that the reason is unknown), genetic or secondary(its caused as a side effect of another primary disease). Mainly glomerulies are scarred and loose their filtration function. Of course not curable.
When it is primary, patients develop severe edema, and becomes nephrotic range proteinuric, progresses aggressively. Whereas when it is secondary patient becomes non- or sub-nephrotic, and kidneys worsen in longer period of time.
From this point of view, whenever there is high proteinuria and edema, patients are treated with immune-suppressive, and proteinuria is targeted to decrease. Because the main marker is protenuria (meaning that higher levels of proteinuria, higher speed of worsening).
But for secondary FSGS patients, main target is to treat the underlying disease. Because if that disease is cured, then pressure on the kidneys lowers, and patient does not progress to ESRD.
What is confusing for my case (also my doctor agrees with me) I do not have any candidate disease, so that my kidney disease can not be clustered as secondary. On the other hand I am not even sub-nephrotic, and I don't have edema. So my doctor cant classify my case and she asked for a genetic testing, and we are waiting for the results. I dont think its genetic, because when its genetic, the disease shows up in earlier ages, maximum around adolescence.
To sum up... It is a confusing and challenging type of kidney disease. And doctors approaches to this disease in different ways. There are some doctors, who are immune-suppressive friendly, because even 1.9 g/day proteinuria means slowly decrease in kidney functions. But some doctors don't think that it worths to put additional stress on the body, since this level does not cause a rapid progress to ESRD.
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and she asked for a genetic testing, and we are waiting for the results. I dont think its genetic, because when its genetic, the disease shows up in earlier ages, maximum around adolescence.
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