Is anyone else in CKD limbo?

[AutoimmunetoStars]

I’m struggling with this badly. No one can tell me WHY this is happening, or the cause, and all anyone wants to do is monitor, it’s just super frustrating. Recently, I got sent to the ER because my kidneys dropped severely in function. Years ago, I had an AKI, and that was caused by dehydration from IBD, which caused me to have a function of a stage 2 CKD individual, but that also means it wouldn’t get worse given it wasn’t caused by a disease specific to the kidney. This time, I don’t know the cause of my kidney condition because everything is inconclusive. All the antibody tests were negative, but the function is still low. It’s “stabilized”, it’s not better, but it’s not worse. But the “stabilized” means my gfr went from a 77 to a 40.

I’m not bad enough to get the shot of a kidney biopsy to determine definitive answers, given the risk, but I’m not GOOD enough either given my condition deteriorated without a REASON. I don’t know what I have and it’s tiring. Anyone else just stuck with monitoring? I’m tired of what’s going on, I hate honestly not having a definitive answer.

[Bassetmommer]

Your user name implies you might have an autoimmune disease. AND guess what can cause the kidneys to have an issue.... autoimmune diseases. or the medications to help with those chronic illnesses.

[AutoimmunetoStars in reply to Bassetmommer]

That’s the thing: all my conditions are accounted for, so it’s not that. This includes a condition that can impact the kidneys (similar to lupus), but the blood numbers are showing that it’s in normal ranges. It doesn’t help none of the markers are popping up, cause I tested negative for all the autoantibodies. My immune system is very active, and they’re thinking it’s immune related, but it’s too “risky” for a biopsy to confirm given the test results being inconclusive. The only immune drug I’m on is Stelara, and if it’s that, that’s another problem I might end up having. If I get off that, I might end up in a position like before since it’s the only drug that’s been proven to stop my IBD D: It sorta feels like a no win here because if its stelara, then I need a new drug that works as effectively or it’ll just tank my numbers given the output issue (dehydration from disease). If it’s autoimmune, that’s an entirely new set of issues

[yolsdfghjk]

information on google states,

Stelara can cause renal dysfunction, which can be irreversible and progressive if left untreated.

Some patients have developed proteinuria after taking Stelara.

maybe you should ask your doctor to put you on a different medication. EGF is only rough marker used to check kidney function, just keep an eye on any protein in your urine -buy a dipstick test, and keep an eye on bp, any diabetes and blood potassium,sodium etc. Seven years ago my EGF was 35, now it is 25 and I feel fine. All your tests are negative, which is good. I had a kidney biopsy which showed some of my kidney had deteriorated but a biopsy can not cure your kidneys so don't worry about needing one.

[Bassetmommer]

I looked up the information on Stelara and there were sites that say it can cause kidney damage and others that say it does not. I was on it for a couple of years and it was the best biologic I was on. And I have tried over 13. You do not say exactly what it is you have. My autoimmune disease is Psoriatic Arhtiritis. It truly impacted my kidneys because PsA causes your uric acid to get out of balance. It forms crystals and I passed multiple kidney stones over two years before the doctors put me on a med to lower it. It just added to the already done damage. Do you take ibuprofen? That can cause havoc on the kidneys.

[AutoimmunetoStars in reply to Bassetmommer]

I have Crohns, had UC previously and I have IGG4 RD (semi like lupus, but with the IGG4)of the intestines. Technically I have Crohn’s in all but name (I have a jpouch, it’s in there but it doesn’t reach anything else so it’s never “officially “ labeled as Crohn’s, except in order to get Stelara), I have family history of kidney issues, but I don’t have Uric stones despite being predisposed due to both IBD and family history of that. The only research I managed to find had been that IBD may cause kidney issues, but it’s with stones and obstructions, very rarely IgA nephritis (though underreported). That and like you said, stelara has off and on data about potential kidney issues from it, but nothing concrete

I can’t take ibuprofen due to the intestines being trash, so I haven’t had any since, at max, 2015. I don’t take any drugs that go through the kidneys or worsen them directly. That’s what made things so surprising I think, because my autoimmune conditions weren’t triggered, I hydrate regularly, and I don’t eat meat so it’s not like I form those type stones, either. I have an appointment coming up to follow up with my kidneys, so I’m gathering questions to ask about it since the doctor did say I can push to get one done, but they don’t believe it’s a risk worth taking since biopsy’s cause bleeding. It’s just that I also don’t have a good history with monitoring either. I always tend to get severe when they do that, even if it’s not with this condition and it’s about my other ones (they’ve done that with my ibd and every time things go downhill)

[Bassetmommer]

Inflammation, with all the diseases you have can and will affect the kidneys. Inflammation goes everywhere. It can be in your heart and other organs. And just because it seems it is under control, it never really is. Talk to your doctor about the risks of each drug.

Once the kidney gets damaged, even mildly, it builds on progression or decline. Think of a filter that is only 10% clogged up. Well, it has to work harder to get the other 90% filtered. The filter eventually continues to clog up and break down from over work. That is why kidney disease is progressive. When we help with not putting things that can clog the system, like high protein, it slows the progression, but it is always there. That is why protein ends up in our blood. You can help it with drugs and diet. But it will always be over worked. Many people survive kidney disease because they die of other diseases like heart issues. But the damage once done is not reversible.

I am sure they will figure it out eventually. It takes time. So sorry you have to go through this.

[Darlenia]

IBD is an autoimmune disease that, all by itself, can damage your kidneys. It doesn't have to morph into something else to do that. As mentioned by Bassetmommer, the inflammation from any autoimmune disease is hard on organs. Moreover, autoimmune conditions are exceptionally unpredictable - sometimes targeting other organs one may have thought were completely out of reach. So please keep these things in mind. It's very important to put the horse before the cart - it's often the disease itself that's the villain, not so much the meds. Biologics like Stelara are great at controlling flares and inflammation and subduing your nemesis. (My son takes Taltz, another biologic, for PsA - PsA also causes kidney issues.) So, whatever you do, please don't discontinue it without getting the prior approval of your doctors, especially your rheumatologist. Perhaps he can switch you to another med that will control your IBD and lower side effects as well. As for biopsies, please keep in mind that it requires taking a tissue sample from an already stressed kidney. I sense your rheumatologist may think your IBD is primarily responsible for your troubles re not only your intestines but also your kidneys. If not, I'm sure he'll plan additional steps. (This would be a good time to ask your rheumatologist for a referral to a nephrologist if you're not already seeing one.) Thankfully, we're in this wonderful time where much research is being done on autoimmune conditions. I sincerely hope solutions are found for all of them.

[AutoimmunetoStars in reply to Darlenia]

I actually have a nephrologist, the neph didn’t want one done, despite no inflammation in the intestines currently. Right before this happened, I had a scope and it was perfectly clear. That’s why they were so shocked when I said my kidneys went and tanked. They immediately suspected my intestine, but it couldn’t be. Unless it’s in a different part of my gi tract, but I’m not having gi issues, and both scopes were clear. My hemotologist was scared of the wbc count being consistently high, so they checked for cancer, but the on,y thing it showed was anemia and high wbc. (I can’t figure out how I got that either, outside of kidney problems). When the neph did the work up, none of the antibody numbers were there, I hadn’t produced any. Doc said I could push, but like, nothing definitive is showing

[Darlenia in reply to AutoimmunetoStars]

Hmm.... Now I'm baffled too! You're so young to be facing this complex situation. Keep asking questions and advocating for yourself. Don't give up! I truly hope that your doctors figure things out and that many good years come your way.

[aspenroadgal]

I feel your frustration, I went from having normal kidney function, GFR was >60 down to 46 then to 41 within a matter of months. I was sent to a Kidney specialist, had numerous blood tests, an ultrasound of my kidneys, and they found nothing. Everything was normal except my creatine was higher than normal so the GFR was below normal-no explanation for the creatine number. I was told that maybe, when I had a severe bout of diarrhea (the norovirus) back in March, that dehydration, along with my meds, either caused injury or damage to my kidneys, and also my age is a factor (64). I am not satisfied with that answer. I started investigating myself and found that there are two medications that I take that also could be the culprit. I am on lisinopril (10mg) and crestor(10mg). My creatine starting going up when I went on the Lisinopril. Crestor is not a kidney friendly medication either, and there are other kidney friendly statins out there. I watch my BP everyday, when my kidney function was 41 my BP was extremely low. So I decided to cut the lisinopril in 1/2, which was ok'd by my doctor, and my kidney filtration went from 41 to 52. I asked if they could put me on different medications that were not so hard on the kidneys, and was told to stay with what I was on, drink LOTS of water and monitor. My body is very sensitive to medications, I hate taking them but have no choice. Won't see the kidney specialist again until April 2025.

[AutoimmunetoStars in reply to aspenroadgal]

That’s actually what I’ve been thinking about. I thought maybe it’s the stelara, but I asked the neph, and they didn’t think so. I have other drugs, but none of those go through the kidneys either, not like that anyway. They originally thought I had another dehydration/ IBD related episode but I didn’t, and I had a scope. I drink water enough to not be dehydrated. So it’s very confusing. I’m late 20s, and I unfortunately, historically, waiting to see has bad outcomes with my health :/ the last three times a doctor told me that I was sent to the hospital. Or nearly to the hospital