My brother apart from his low platelet issues, has developed acute kidney injury this week and is admitted. Baseline creatinine of 0.90 20 days ago has shot up to 4, 4.7, and 7 in the last three days and is now on temporary dialysis. The doctors after all workup are at their wits end as to what's the reason. There is no evidence of clotting on ultrasound.
Any idea on what might be causing this rapid deterioration in just a matter of 20 days????
Doctors believe for any kidney involvement because of his autoimmune condition, it would happen in stages and wouldn't be this rapid.
He was on high dose methylpredisone 1g for 3 days (twice), rituximab injection twice, eltrombopag oral for 14 days and velpatasvir-sofosbuvir for his HCV apart from oral steroids for 8 months, tapering on and off from 60mg and HCQ due to his APS and sudden fall in platelets 4 weeks back.
I was wondering if anyone could throw some light. I'm not seeking medical advice, but im really desperate to get some info on this situation. I'd be highly appreciative if anyone could throw some light on what's happening??? Thanks!
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No telling what the cause is without a biopsy. I’m not sure I would say that autoimmune patients don’t have a precipitous drop in their kidney function. I feel like that’s how it typically works. One day people are fine and the next week, their kidneys get hit and hard. Or people become super swollen because they are peeing out too much protein and develop nephropathy.
Sounds like your brother needs a biopsy while they keep him on dialysis. I agree with wittycjt that CAPS should be on the differential along with Heparin induced thrombocytopenia and thrombosis aka HITT. If he has low platelets, hematology should be consulted and on boarded immediately given his history. This is imperative.
I hope you get some swift answers, we are not medically trained so can't advise, but I enclose this paper in case it is relevant for him: ncbi.nlm.nih.gov/pmc/articl... Please keep us informed as to how he is doing. MaryF
Thanks for all your replies. My brother is in ICU but relatively stable with low saturation due to fluid in lungs. They are doing a kidney biopsy today after infusing platelets. The renal/heme team suspects the reason could be lupus nephritis, but at the same time the hematologist says, he has been on all the meds that they usually treat Lupus nephritis with before this acute kidney failure. They have not mentioned anything about CAPS. So my plan of action would be to wait for the biopsy results and run around to find a renal/heme/autoimmune team that can understand this and treat my brother. Praying that the biopsy goes smoothly today 🙏
The only thing I will add- micro clots are not always visually seen on scans.
Does your brother also have lupus alone with his APS?
Is he also experiencing ITP?
Immune Thrombocytopenia ? A very low platelet count?
These are clues to check for- sometimes in an APS crisis , the patient can clot in a few organs and bleed at the same time.
I think his doctors will know all about this already, so you don’t have to worry about this. You would know about this if it were the problem. ( it’s called CAPS.)
Thanks for all your replies and prayers 🙏. The biopsy didn't go through yesterday as his platelets were only 45,000 despite one unit of platelets. So the doctors didn't want to take a chance. They have shifted him to ward as his vitals were stable except low sats and they might either try again tomorrow depending on his platelet situation or try to treat him presumptively.
KellyInTexas yes, as way of background, for the last eight months he is having ITP, about 3 weeks back he was also diagnosed with HCV with significant viral load, which I think probably triggered his autoimmunity leading to ITP. If the first hematologist had tested him eight months back for HCV and treated him for that when he first presented with jaundice and ITP (platelets were hovering around 50,000 that time), I believe he wouldn't be in this situation today.
For his ITP as it progressed, the doctors tried everything from oral steroids, pulse therapy, rituxamab and eltrombopag, along with antivirals for HCV, but he has not still completed the full course of rituxamab and eltrombopag as it was stopped after he presented with acute kidney injury and slight pnuemonia. And his antivirals are also stopped.
As I write this, his creatinine has gone up to 7.6 as they gave him a break from his dialysis yesterday, platelets 33,000 with stable vitals but low sats. The doctor told they will attempt biopsy tomorrow with 2 units of platelets. Feeling completely helpless and overwhelmed what my brother is going through 😢
This is very overwhelming for you. You are a very good brother and friend- your brother and family and lucky to have you. Make sure to get the emotional support you need right now for yourself.
I had very severe ITP at 18 months old- a baby! ( I’m now 52.)
My platelet counts were in low 30,000 range.
I had not had any precipitating viral infections- at that time in 1970/ the “I” stood for idiopathic. Now they know it is for “Immune.” ( APS had not yet been discovered in the medical world.)
The count was too low to surgically remove my spleen, so I was kept in the pediatric icu and given very high pulse steroids.
This did do the trick- took care of the clotting. ( platelets are used up in microclotting process.)
I was very lucky.
Rituximab is certainly the right choice for ITP.
As Mary said, we are not medically trained.
It does sound like he is getting good care.
Does he have clots seen in any limbs? Lungs?
Here is the ghic website- there is an international list of specialists for APS. There you should see India. Dr Khamastra is one of the worlds leading experts. I believe he is back in India- he was working in London for quite some time snd was a colleague of Professor Hughes.
Perhaps your brothers doctors could call him for if they had any specific questions.
Thanks for your kind reply and your struggles with APLA and ITP as a child. I truly understand how tough it must have been for your parents , family and you at that time. This disease is so cruel!! I'm so happy you are doing well now. Your story does give me renewed hope. Thanks so much regarding the information on Dr. Khamastra , I will do more research and try to meet him in India.
My brother underwent kidney biopsy yesterday after his platelets went to 81,000 after two units of platelets and is in ICU for observation. We will get the results mostly tomorrrow and will keep you all posted.
My brother's biopsy results came and the doctors have not given a official diagnosis but it primarily is microclots in the kidneys, seems like CAPS like everyone here said but there is no involvement of other organs.
The biopsy impression reads as:
- Thrombotic microangiopathy, acute phase (glomerular and vascular form)
- Acute tubular injury, severe degree with patchy evidence of interstitial hemorrage
Nephro doc says that it will take time for the kidneys to heal but he has good chance of healing since he is relatively young (43 yrs) and since his creatinine is 7-8 he will require dialysis every other day initially, which is very depressing.
One positive thing is that as soon as they got biopsy results, he was started on plasmapheresis and his platelets dramatically increased to 60,000 yesterday and 90,000 today, which never increased this much initially with all the drugs that they tried. They are planning for another 4 sessions of plasmaperesis and hoping that it holds the platelet levels after that as well.
As far as kidney improvement is concerned, ive read kidneys do recover eventually after such incidents. Can anyone with similar incident involving kidneys give some suggestions or direct me to some links how to nurse back the kidneys to health after this devastating episode, tips, good practices etc.
Also any other suggestions and things to look out for.
Sorry for the long post. These posts are therapeutic for me and might help others as well. Thanks.
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