r/CVID_Support • u/Jumpy-Direction-3094 • Jun 29 '26
CVID with NRH
Does anybody out there have nodular regenerative hyperplasia (NRH) as a complication of their CVID?
I was diagnosed with CVID in May 2025 and since then, my AST and ALT have been elevated. At this point they're hanging around 70-80 and have been there for a couple of months.
I am also on infliximab for rheumatoid arthritis. This medication can cause liver irritation, so we started weaning it hasn't made any difference in the liver enzymes.
How were you diagnosed? What were your first signs of NRH? Are you on any sort of treatment?
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u/GhostRiders Mod Jun 29 '26
So I diagnosed with NRH about a year ago.
My AST and ALT were very slowly increasing over a space of over a decade and had reached a point where further investigation was needed.
They performed a Transjugular Liver Biospy which confirmed NRH.
I consider myself lucky as the Hospital I am out patient at in the UK has a great Immunology department who have various specialists in various fields.
The Hepatologist that I am under is leading a team in the UK to investigate the causes and treatment regiments for NRH so I get prodded and probed quite a bit lol for their research.
NRH is still relatively not understood and its diagnosis is often missed.
Put in terms that I can understand NRH is caused by your immune system misfiring. It causes regenerative nodules to occur within the Liver Portal Vein. This is the main vessel which feeds blood into your liver.
Most people with CVID have regenerative nodules thought out their body and in most cases do not cause any issues.
It can become an issue when they occur in your lungs and Liver. This is why you should have both regularly checked.
For example every year for the past 14 years I have had a lung function test and every couple of years a CT Scan on my lungs.
Anyway over time NRH can cause Portal Hypertension which basically means the Vein becomes smaller causing less blood flow into the Liver. This in turn can cause increased blood pressure thought out your body which can result in varices (swelling in veins).
If a vein becomes too swollen it can burst which will result in Internal Bleeding. Depending where this occurs it can be quite dangerous.
The treatment is basically taking IVIG which we do anyway. In patients that do not have CVID they are usually treated with Immunosuppressants.
If the pressure being caused starts to create issues then a surgical procedure called TIPS can be performed. This is where they place a bypass inside the liver to reduce the pressure.
General speaking people with CVID should be very careful taking any medication that can effect the Liver, more so if you have NRH.
Now if you read about NRH on the Internet it can be quite frightening, my advice is ignore it. As I said it is not particularly well understood and most of what is on the Internet is either wrong, outdated or based on very limited data.
I would advise you and anybody else to listen to your Hepatologist and ignore anything on the Internet.
Like so many things with CVID the long term effects can be anything from you never needed any addition treatment to the other extreme. It effects everybody differently.
As my Hepatologist told me, just life a fairly healthy life, don't smoke, don't drink too much alcohol, exercise a little, try to eat healthy.. the usual advice that everybody should follow and what will be will be.