The standard medication protocol for the treatment of portal hypertension and its conditions seems to point to the wide range use of non selective beta blockers called nadolol or propranolol. Non selective beta blockers are used to bring down the pressure in the varices to prevent the first variceal hemorrhage, or lessen the risk of re-bleeding. Unfortunately, most causes of portal hypertension cannot be treated, but treatment focuses on the prevention or management of complications, especially the potential bleeding of varices.
Along with medications, diet, endoscopic therapy, surgery, and radiology procedures all figure into the treatment or prevention of complications. Patients are treated based on their individual liver function. In cases of cirrhosis of the liver or what is referred to as non-cirrhotic causes of portal hypertension I was able to dig up some comparison statistics on the incidences of varical bleeding. Regrettably I was unable to find out the actual differences in medication treatments between non-cirrhotic and cirrhotic patients, and I can only surmise at this time that it is dependent on a patients previous bleeding incidents or their potential to bleed?
Nadolol (Beta blockers) may be prescribed alone or in combination with endoscopic therapy to reduce the pressure in varices and in many cases prevent bleeding. Lactulose is a drug prescribed to help treat a state of confusion or other mental changes associated with hepatic encephalopathy. Hepatic encephalopathy takes place when toxins from the intestines which are normally removed by the liver accumulate in the blood and impair the function of brain cells. According to what I have learned, fortunately this type of encephalopathy is reversible.
I have only touched on a few of the main drugs used to treat portal hypertension, so for the sake of comparison allow me to list all the medications I have been prescribed for my particular case of portal hypertension:
Fragmin (Dalteparin– low molecular weight heparin) is a low molecular weight blood thinner – I have been injecting myself 2 times per day (12,500 iu) since early 2005. Fragmin is a derivative of heparin. A study called the “CLOT” study commissioned in 2003, showed that in patients with malignancy and acute venous , dalteparin was more effective than coumadinin reducing the risk of recurrent embolic episodes. When it was first determined I had portal vein thrombosis back in 2002, I was initially prescribed Coumadin, which is still one of the most common blood thinners on the market. Coumadin was not effective for me as I developed clots in the mesenteric artery (2004), and also clots to both lungs back dating back to February 2005.
Nadolol, as mentioned above, is commonly prescribed to combat the pressure in varices to prevent bleeding. Initially I was prescribed 120 mg per day (about 5 year’s ago) and was titrated an additional 20 mg just a few year’s ago for a total of 140 mg per day. Nadolol is of course the preferred treatment for esophageal varices as it is far less evasive then endoscopic treatments.
Pantoloc (or Pantoprazole) is a proton pump inhibitor which in my case was prescribed to reduce stomach acid and inhibit the risk of bleeding from the varices in my stomach. Pantoloc is also prescribed for gastro esophageal reflux disease (GERD), and stomach ulcers. I am currently taking 1 tablet – 40mg per day.
Simvastatin (trade name Zocor) was prescribed after I had an apparent transient ischemic attack (TIA) in November of 2005. Some people consider a TIA to be a mini-stroke, but, in reality it’s a stroke that corrected itself or improved functionality to the affected body part. Simvastatin is used to control elevated cholesterol levels in the arteries and to prevent cardiovascular disease. Because I have an underlying clotting condition – this drug is also used as a preventative measure for any further episodes of this nature. I take 1-20mg tablet per day.
Tryptophan is an essential amino acid that the body can’t produce on its own, but usually we get it in our diets. The body in turn uses tryptophan to produce niacin, and serotonin. Serotonin is thought to be useful in helping one get a healthy sleep and with that a stable mood. In order for tryptophan in the diet to be converted to niacin, the body needs to have enough vitamin B6, iron, and riboflavin. The amount of ferritin in your blood is directly related to the amount of iron stored in your body. In my case, because my iron levels are often low, due to slow loss through the stomach varices, I need tryptophan to compensate. Tryptophan is naturally found in many foods such as cheese, chicken, eggs, fish, milk, nuts, and turkey. I also have quarterly iron infusion which helps keep the iron levels high. I take 2-500mg tablets per day and only in the evening.
Gabapentin (Neurontin) was prescribed because I have experienced nerve pain, or as best as I can describe nerve “irritation” in my shoulders and back. I first noticed this condition about 2 years ago, when I was undergoing PUVA (ultra violet light treatments) for psoriasis yet another condition that I believe I have due to an over active immune system. Gabapentin was first developed for epilepsy, and is now widely prescribed for pain relieve – primarily neuropathic pain. I take 2 – 600mg tablets per day.
Calcium plus D Since the Fragmin I take is a form of heparin, a risk of osteoporosis following long-term use cannot be ruled out. I currently take 3 – 500mg tablets of calcium per day, and this brand has 125iu of vitamin D in it. Vitamin D aids in the absorption of calcium in the body. I also take an additional 1000iu of Vitamin D for a total of 1375iu per day. In discussion with my family doctor this past week, he stated that a person can safely take up to 2000iu per day. Vitamin D benefits are numerous, and there has recently been much research in the past few years’ that support that. Here is one of those articles:
http://www.cbc.ca/health/story/2008/05/16/f-health-vitamin-d.html
Vitamin B-100 “B” vitamins are helpful in the body if a person has elevated levels of Homocysteine. Elevated levels of homocysteine can cause the blood to clot more easily, and also can damage the lining of the arteries. I was prescribed Vitamin B-100 (Vitamin B-50 works also) because my homocysteine levels were high. As stated previously, I have an underlying clotting condition, whereby I not only have a clot to my liver, but also my spleen, and mesenteric arteries. I take one tablet of vitamin B-100 per day, and have done so since 2002.
Imodium (Loperamide) is an anti-diarrheal drug usually sold over the counter in most pharmacies. I was prescribed this medication due to the high frequency of bowel eliminations I have within a single day. Imodium for me brings the rate down, but does not completely stop the process. Because the arteries in my intestines are engorged with blood due to PVT, I do not have what is considered “normal” bowel movements. (The all too frequent trips to the bathroom tend to wear on a person after awhile. With those all too frequent trips come bleeding and sometimes it can be very discouraging). I take 2 tablets in the morning, and 2 in the evening, and increase that amount during the day sometimes, depending on what happens.
Psyllium capsules (Brand name Metamucil) is used as a dietary fiber supplement. Psyllium is mainly used for laxative purposes, but it can help reduce the symptoms of constipation and diarrhea. In my particular case the gastroenterologist prescribe it to bulk up the stool, in order to decrease the frequency of elimination that is by far the most inconvenient and sometimes painful side effect of portal hypertension. I currently take 5 tablets per day and have done so now for a number of year’s now.
Dicetel (pinaverium bromide) is primarily prescribed for irritable bowel syndrome. Dicetel helps relieve the symptoms of abdominal pain, bowel disturbances, and intestinal discomfort. It acts by relaxing the smooth muscle of the bowel. The clots from portal hypertension cause congestion and subsequent pain in the lower intestines. I was prescribed 3-50 mg tablets of Dicetel which I started last fall, but because the pain is vascular it is hard to treat and the verdict is still out as to whether or not this medication is working as it should.
Codeine Phosphate was prescribed last year for the pain as it is safer on the liver when compared to acetaminophen (Tylenol). As a precaution I will only use Tylenol (sparingly) during the day, say if I have to drive anywhere, or if I am doing something that requires mental alertness. If at home when the pain starts (usually in the evenings), I will use the codeine, or apply heat such as a hot water bottle, or take a warm bath depending on the intensity of the pain. The prescribed dosage is 1 or 2 tablets (30 mg) taken every 4 to 6 hours as needed.
In conclusion … I want to say that I know I have not listed all the medications one can potentially be on for such a condition, but I have at least highlighted some of the meds that possibly may be helpful in your case? If in doubt of course, always ask your doctor and if by chance there is something noteworthy regarding your case – please share your comments below!
Thanks so much.
Clint,
My husband was recently diagnosed with portal hypertension caused by NRHL (nodular regenerative hyperplasia of the liver) following a kidney transplant in 2007, rejection of the kidney in 2010 and nephrectomy of the transplanted kidney in late 2010. He also takes 4-6 Imodium a day and no one can tell us WHY he has this GI upset. I am assuming the portal hypertension is the cause. Can you explain it to me? (I also realize that there may be other factors involved but we are not aware of them.) By the way he also has a protein C deficiency and an abnormality of Factor 5.
Thanks , Kathy
Hi Kathy,
Thanks for your comments and question. Imodium is prescribed for Portal Hypertension (PH) patients because the arteries of the wall of the intestines are engorged with blood due the the clot to the liver. Imodium is used to slow down the frequency of bowel movements in order to keep the associated pain at bay. I also take the same amount as your husband, but have increased that dosage on an as need basis depending on how much discomfort I have in the day. I was also prescribed psyllium fiber to help congeal the matter and slow down the frequency of bathroom visits. There is much pain associated with this side effect of PH, and it is harder to treat because it is vascular in nature.
Does your husband deal with this type of pain? Also … is he on any kind of beta blocker to slow down his heart rate? Nadolol (brand name Corguard) is the one I am on and I take 140mg per day.
Hope this helps? Let me know if there is anything else I can do?
Kindest regards, Clint
Clint, Thank you for your reply. Yes, Mark was put on 80 mg Nadolol in Nov. He does not have a ‘clot’ but they think the nodular disease caused the portal hypertension. We are presently working with a liver specialist out of Chicago. To complicate matters, he is on hemodialysis and is not a candidate for another transplant due to CMV infections and DSA and ascites. He is not very tolerant of pain and found lomotil to help with the intestinal cramping, but it does not work so well in stopping the diarrhea. I was wondering (and have not asked anyone) what the prognosis is for this PH disease.
Kathy
Hi Kathy,
I am truly sorry for Mark’s current condition, and I feel for you in this position. Portal Hypertension (aka Portal Vein Thrombosis) is complicated enough without having extra things to deal with. My knowledge of portal hypertension is that this is the overall condition or complications if you will of the initial problem of the portal vein being clotted. In fact I have started to write a post on the distinction of the 2 terms, although they are one in the same. With the portal vein being clotted the blood is re-routed due to the pressure from the clot, therefore causing arteries to protrude into the esophogas, and stomach from the lining of such. When “varices” form in the esophogas as opposed to the stomach, then the danger of a bleed is imminent and the prognosis is dependant on other complications or whether or not the bleeding can be stopped in time and at the same time keeping the airway open. I myself have had a bleed from the varices in my stomach, and although the severity is not exactly the same as from the esophogas, however I came very close to having a transfusion at that time.
When you asked about prognosis … it is hard to answer that because I think it all depends on the individual and what other complications they may have. One thing that can happen and apparently has started to happen to me, is that a person eventually can develop “pulmonary hypertension”. Pulmonary hypertension takes place when the heart works harder to keep blood pumped through the lungs. In particular the right side of the heart gets enlarged because after all it is a muscle, and when it works harder it becomes bigger. This is not good as in the long run the heart begins to fail. I hope to post another article on this topic in the future and in my research so far this condition is uncommonly known as “portopulmonary” hypertension.
All of this can be a little overwhelming at times, and it is not my intention of scaring anyone, but I believe people need to know the realities of what we are up against. On a more positive note, there are people who subscribe to this blog who like myself have lived for a long time with this condition and seem to be hanging in well. I have lived almost 9 year’s now beyond my diagnosis, and I have grade 3 varices – which are the most dangerous. I take a high dosage of Nadolol (beta blocker) 140 mg per day, plus am on a host of other medications including 2 needles per day of Fragmin (anti-coagulant) for the past 5 years. I get diarrhea and severe pain, and it is not fun dealing with, but I carry on as best as possible. I have a strong faith which I know has sustained me, and I just carry on as best as I am able. There are people I know who have had PH for 30+ year’s and although they have had worse bleeding episodes they have survived. PH can be traced to people who have cirrhosis of the liver, or may have a form of hepatitis as the cause. In rarer cases, such as mine and some of the folks I have talked too, the cause is genetic. People with this form of PH are referred to as having non-cirrhotic portal hypertension.
Has your husband tried Imodium for helping slow down the diarrhea? I was prescribed Codeine for pain, which is only “sort-of” effective as the pain is extremely hard to treat due to it being vascular in nature. I have asked my doctors about pain management, and it seems that there is not much out there to control the pain in this region. I know of one gal who is on Fentenyl patches for pain, and that has not proven to be 100% effective for her, but only takes the edge off.
Well … I hope this helps? Please extend my regards to your husband and tell him to keep up the fight! Your information is beneficial and if you hear of any new breakthroughs please come back to share your story! In the meantime (I hope you don’t mind) but I will keep Mark and you in my prayers!
Take care, Clint
Clint,
One last post for now. You have been very helpful and your explanations are easy to understand. Thank you. We, too, are people of strong faith. I appreciate and welcome your prayers and will lift you up in prayer as well.
Kathy
Thanks Kathy. It is nice knowing that you too are people of faith … we need to rely on God for uncertain times in our lives. Thank you for your prayer support most of all … I too need it day by day. Blessings, Clint
Pingback: The Peace that Gets Me Through
My Dauhter is four years old, and it has taken the last four years to diagnose her condition, despite visiting over thirty doctors, paediatricians and other specialists.She has a chronic PVT and she has had a couple of pretty catastrophic bleeds. I postulate: The doctors took 4 years to find this problem, and now they try to convince us that they are god when it comes to treating, but at the same time concede that there is no treatment due to her unsuitability for surgery. This is crap. For the year priorto her haematemesis our herbalist did a wonderful job of abating her plethora of symptoms, when the doctors all laughed at us and tried to convince us she had cytomegalovirus. We knew better. We knew that it was something big and we knew her liver wasnt processing nutrition properly because of all the excess fat in her blood – a test from the herbalist which the doctors refused to look a, and her heavy metal accumulation because she couldn’t detoxify – another they refused to look at. They laughed at the herbalist who kept her so well for so long, even though he was in the dark as to what the real issue was. An irridologist told us she had liver issues, a reiki therapist told us she had a blockage to her liver – when I asked paediatricians about the posibility of slow moving blood due to a blocked vein or thick blood they would role their eyes and chuckle – not possible, now four years later they are looking at thick blood causing her blocked vein. hmmmmm. For many of our appointments, we would turn up with our three kids, and at the end of the appointment I’d say – hey, by the way, do you know which child is paige – they would treat the peice of paper in front of them and it never even occured to them to look at the patient. In contrast – the herbalist will look at her and note that she has some clubbing, a white tongue, cloudy corneas, is a little stout for her age, hairdoesn’t grow very fast, has distended abdominal veins, note the butterfly rash on her nose, spot the petechiae on her chest,notice that her belly button looks a little unusual etc etc etc, all the things that if the doctors had of noticed she would have been treated within a sensible time frame. The doctors even did several cat scans and ultrasounds, all of which showed the problem but they never noticed it – they were too busy ordering tests for Kala azar, malaria and a host of other diseases which don’t even exist in this country. Paige is so much better now that we know what we are treating and have returned to the herbalist, after her emergency management (banding) She is still on the meds given by the docs but that doesn’t exclude us from other help.. The interesting part is that she only threw up blood after we skipped the herbalists appointment due to lack of money and she went without her good herbs for a few days. I challenge people to look out of the square, and look to the countries where this is most common such as africa and india. They leave these western doctors in the dark, even when it comes to medical options. Don’t beleive them when you go in for your 15 minute appointment and get fed toe shuffling rubbish. try looking up some of these things.
Ultrasonographic microbubble thrombolysis
Ekkos corp. Washington ultrasonic catheter thrombolysis
local thrombolytic administration
Jalodar rasayana
shochu
Mihara rubellus lumbrokinase
Tensio 4
beta blockers in combination with isosorbide mononitrates
Nattokinase soybean cheese
serrapeptase
and the list goes on and on with a snotload of things the doctors wont tell you about because they are so blinkered by their “evidence based medicine and peer reviewed journals” and payments from drug company reps. Don’t forget that MOST OF the medicines they use have plant based origins – why if these things are so good for you when you are well can they be no good when you are sick. It is rubbish
obviously some of these things will be contraindicated with hypersplenism and associated hemmorage risk, or other things specific to your condition, but it depends on your circumstances and state of health. Yes, some of these natural therapies may be scams or may not live up to their expectations but how do you think doctors make their money? by you being sick. Some of these medications that they say are safe are – with short term use, and insidious with long term use – which is what you are going to need if you have a chronic PVT. If you sit back and wait for the sollution to come to you, you are ultimately relying on a doctors motivation to lose a patient. hmmmm.
If you are scared of getting laughed at by not pushing the difficult questions you will never get an answer. My daughters doctors dont like me but I’ll tell you they don’t know half as much as they think they know. Ive lost count of how many times one “specialist” will completely contradict another and it is frustrating, dangerous, unnecessary, ridiculous and utterly counterproductive. At the moment I have one specialist telling me that serrapeptase doesn’t work, another telling me that it works so well it will cause internal bleeding, one telling me she has a “fibrotic cord with no collateral devellopment”another telling me she has partial recanalisation with a small amount of flow, one telling me to use vit. K, another telling me it will make no difference (but it does), a gastroenterologist telling me that diet akes NO difference toher condition (hmmm), another telling me that diet is exceptionally important (but sugar intake is inconsequential), and yet another telling me that glucose in portal hypertension patients causes a massive increase in flow in the left gasteic vein leading to an increase in rupture potential for varices – we know the last one to be correct from experience. We have one telling us that you cannot measure the degee of portal hypertension by looking at the degree of caput medusae, and another saying that it is the most reliable indicator – which e know to be correct. DO YOUR HOMEWORK and live a healthy life. Mydaughter would have been dead or gone into multiple organ failure a long time ago if we listened to everything we were told. And yes, the herbalist has made a mistake or two, but he has been more help to us than dozens of doctors, (surgeons aside), expensive help but worth every cent.
Andrew.
Thank you for sharing your daughter’s journey on this blog. It’s always heartbreaking to hear of kid’s having to go through something as disconcerting as portal hypertension and it’s dreaded side effects. You have provided much information and given a whole new perspective for other’s to consider, and I am grateful for that. There is so much more to learn and you have provided many new terms and possible techniques for people to consider. There definitely is credibility to using herbs and much I know there is much more history and usage in other parts of the world where practicioners are more willing to prescribe them.
You said that doctors said your daughter was not a suitable candidate for surgery, and I am wondering if they or you are aware of a procedure called the Rex Shunt? A specialist in Chicago, plus a few other doctor’s around the world have successfully performed this operation and the doctor in Chicago (Riccardo Superina) has performed over 125 to date that have worked well. The procedure works best on kids under the age of 5 as atrophy on the arteries is a concern. I have been in touch with several parent’s whose kids have had this procedure and they are very happy with the results. If you have not already done so, you may want to consider calling Children’s Memorial Hospital in Chicago and seeing if you can send your daughter’s imaging – for at least a second opinion. There is a mom there right now from the Ukraine with her daughter and she herself is a emergency physician, however she came to the US for this operation in order to save her daughter’s life. You can read Sonya’s journey on my blog if you are interested in background information. I would also be willing to put you in touch with several parent’s who would be glad to speak with you about this operation and what they and their children experienced.
Your questions or comments are always welcome. Hoping the very best for your little girl!
I can identify myself with Andrew. I have a son of twenty months who has been diagnosed with Portal Vein Thrombosis about two months ago. I did not visit so many doctors as Andrew did but I have contacted at least five, and still have a lot of doubts about which decision to take with respect to my son. The first doctor wanted to schedule an appointment for a Warren, without any further explanation. Now I know this would have been a big mistake! I don’t trust doctors at all, I always find someone else who is providing opposite advice for the same issue. I must say, however, that I have been in contact with a surgeon who really took his time to answer my questions as much he could. But I am still searching for more answers…
Thank you Clint for your website. I discovered so much information and found a lot of valuable contacts. I would like to ask if you could possibly share email contacts of other parents with little children who are suffering from the same condition or who have yet had a rex shunt or other surgical procedure? Thank you in advance!
Thank you Andrew for sharing your story and letting me feel that I am not alone in distrusting doctors in general. I don’t know where to find herbalists but I will try to find one. If you are ok with it, I would like to contact you to know more about this topic as I only recently started to learn about it.
Hi Vane,
I’ll send you an email with some contact information for a few Mom’s whose own children have undergone the Rex Shunt procedure and done very well.
Take Care,
Clint