IVIG and Portal Hypertension Problems

[john]

Hi,
I have been treated with 55 grams of flebogamma every three weeks for getting on for 20 years now.
As I think is standard practise, a liver function test is periodically performed, the reason for which I used to think was to ensure that I hadn't contracted hepatitis through my treatment.
For many years the LFT gave no cause for alarm, but maybe 5 years ago it started to change and I was referred to a hepatologist, and since then have had lots of ultrasonic liver scans and biopsies.
Three years ago a CT scan showed by chance an enlarged internal gastric vein, which pointed to the condition known as portal hypertension, and since that time I have had lots of endoscopies and banding/gluing of these enlarged veins, and have had two emergency admissions when the veins, known in the trade as varices, have bled.
The bleeding is dangerous and is evidenced by black stools.
My suspicion is that the cause of my portal hypertension is connected to having had IVIG over this long period, and in fact I have since met with a couple of fellow CVID patients who have the same problem.
What I would like to know is that is this a more common side effect of IVIG than the professionals like to tell us, and also I wonder whether changing to sub-cut might make things a bit better, inasmuch as it doesn't place such a heavy load on the venous system?
The treatment I now have is routine periodic endoscopy/banding and taking daily beta-blocking meds, in my case propranolol, which reduces my blood pressure but comes with quite profound side-effects.
The chance nature of this internal bleeding makes forward planning extremely difficult as I must go to an A and E as soon as I see the black stools. It is also psychologically and emotionally very difficult for myself and my wife to deal with.
Thanks in advance for any input here.

[mali42]

Hi John
Maybe having 55gms every 3 weeks is putting a strain on your venous system and I suppose the only real way to find out is to go on sub-cut and see what the difference is over time.
If your like me I prefer ivig because I only have to think about it every 3 weeks but the strain this puts on you both I would seriously consider it, or you could have less but over 2 weeks instead of 3.
Hope you get some answers
Malcolm

[marie]

Hi John,
I would switch to sub Q. See what happens. The additional products added to our medications have side effects. I used to be on a sub Q that damages kidneys because of a glucose concentration. Switched to Hizentra- no problems!
Best regards, Marie USA IL

[s162216]

John have you got any form of kidney problem? The additional load from the IVIG solution on the venous system when infused will be minimal as its given as an infusion over a period of time (there would be a massive spike if given very quickly) and the body will maintain osmotic pressure by inhibiting the release of anti-diuretic hormone which will cause the loss of water through urine to compensate for the slightly increased pressure. If however you have any kidney problems that increase water retention then this can result in increased blood pressure although I can't think as to any reason why it would cause portal hypertension seeing as immunoglobulin is not processed by the liver and bypasses 1st pass metabolism by the liver as its directly infused into the bloodstream. SCIG is unlikely to actually cause any difference as it still absorbs into the blood, it just takes a little longer.

Immunoglobulin itself if associated with increased liver enzymes etc sometimes (which can also be an indicator of certain diseases/infections) or a sometimes a general decrease in function which is why liver function is tested although I could find no reason as to why it would cause portal hypertension after a PubMed search.
If your having side effects with Propanolol then speak with your doctor, beta blockers are notoriously patient selective and you might need to try another one, my dad had a heart valve replaced about 3 years ago and since then he's switched the beta blocker he takes 3 times as the ones he tried gave him side effects, he seems to have settled on one that suits him now.

Sam

[john]

Hi guys, thanks for your replies.
I saw the gastro doctor on Monday and his take on my problem is that my liver is fine and the cause of the portal hypertension is a mystery.
The usual treatment for patients with PH is to keep banding and gluing and getting the beta blocker dose optimised.
He did say that I was not given a whole blood transfusion last time because increasing my blood volume was not something they wanted to risk, and this is what gave me the idea that I ought not to have IVIG if I can get SCIG.
The upshot is that I have increased my propranolol dose by 50% and so far so good, my BP is lower as is my pulse. I think I might give SCIG a trial soon if my immo agrees, my specialist nurse says he thinks it will not be a problem.
All I want is the confidence that bleeding will be stopped or at least minimised, I will try to live with the beta blockers!
I'll keep you in the loop.

[john]

Just to keep you in the loop, I have now DOUBLED my beta-blocker (propranolol) dose!!
Tonight I had to run (!!!) 100 yards to make the train and it nearly killed me! Early days problem I hope.