Ammonia levels in blood

Hello all just wanted to see if anyone had any experience with high ammonia levels in their blood. Mine is at around 215 and my wife was concerned because I was starting to show some cognitive hiccups throughout random times over the last eight months so I went to get the ammonia blood test done and it was very high. I was just prescribed a medication that’s approximately $300a month after insurance for a 21 day supply and seems rather expensive they are telling me there is no generic but when I look online, it looks like there is a generic version the drug is called Xifaxan.

Hello:
This is Mark R, living wish PSC for about 6 years.
I am not familiar with high ammonia levels or the med Xifaxan, but I can tell you that Mark Cubans company called “Cost Plus” online drug store was a game changer for me. Even my insured meds are bought far cheaper from his pharmacy not using the insurance.
No I don’t work for them or represent them in any way…
They are a legitimate company that your doctor will be familiar with and can send your prescription in to. you can also check their prices online before having them send it…

Mark R.

Often drug manufacturers offer a copay assistance card. Here is a link for Xifaxan
https://xifaxan.copaysavingsprogram.com/

Thank you, I was able to use the discount card and it was still $300 plus for 21 days. Looking into alternatives. But since I am already on the post, I want to let everyone know or at least be aware to check their ammonia levels in their blood if they’re ever feeling foggy or confused or wake up out of it. Also have noticed some shaking in the hands and hot flash type blood flow throughout areas of my body at random times. Have to meet with a primary care physician, which will happen in the next couple weeks, but was at first told by the Hepatologist that this was not related to PSC but then backtrack after he checked my ammonia levels after me, insisting that there was something wrong.

MAZ 470-303-4738

It is totally related to PSC! Please look for another hepatologist.
I took Xifaxin for over two years, up until my transplant. They have a Patient Assistance program the will cover the cost of the prescription and delivery at no cost. I could have never have afforded it. I see someone has sent you a link to the company, so check it out. You will need your doctors help to apply.
BTW high ammonia is very serious, as you have probably heard. I had several episodes hepatic encephalopathy, as a result of high ammonia, and was hospitalized twice. The most serious episode happened two weeks before I was scheduled for transplant. I have no recollection of the event - I was totally gone. As I came to, my worry was that transplant would be postponed, but the transplant team didn’t blink twice. To them it was only more proof of how badly I needed it.
One more thing - drink your Lactolose! Yummy! (not)

How did the Xifaxan affect you? Did you have to take it for the full two years for it to work? Or was it just because your ammonia levels were so high you had to take it consistently to bring them down if you don’t mind me asking can you share what number you had? I am quite worried about moving forward as I don’t know if I will qualify to get any of the Xifaxam. I used a discount That was attached to the original prescription which was from the Hepatologist. The insurance provider CVS said that that was as cheap as it would probably go. Did the drug keep your ammonia level and check? It seems like ultimately, it Didn’t solve the problem at hand.?

I am just very curious to see what your entire experience was like In regards to ammonia level.

Hi - I’m glad to answer as best I can.
After a little searching, I remembered that the assistance program is through Bausch Pharmaceuticals. Here’s a link:

Click the link or call them for an application. Take the application to your doctor. Keep calling them after you apply for status update - they can be slow.
I was worried that the program had been discontinued, but it looks like it’s active. You will get free meds after you go through all the hoops and ladders. Good luck!

Part 2:
Actually, I was told that Lactulose is the key to keeping ammonia down and avoiding H.E. (hepatic encephalopathy.) If you don’t know it, it’s a prescription laxative syrup (that tastes awful) that is used to help liver patients move ammonia and other toxins through the intestinal tract. I think Xifaxin is used with Lactulose, usually. Here’s the irony; Xifaxan is technically listed as a temporary remedy for traveler’s diarrhea and IBS. They acknowledge its use for liver disease, but it’s harder to get prescribed for long-term use for liver, probably because they make more money on two-week prescriptions for travelers (that’s the theory a doctor friend.) They’re site does include the code your doctor needs (to use to identify you as a liver patient, I ssume.)
Stay tuned for Part 3…

As to my experiences, pre-transplant:
My H.E.attacks were always traceable to my losing track of my lactulose dose and falling short; that would lead to more fogginess, which would lead to missing more doses, which would lead to cognitive disturbance (how do I operate this phone?..what day is it?..what’s my birthday?..what’s the name of this hospital?..who is this person talking on my phone in the nameless hospital? (my sister.)
The last time I had it was a total break from my surroundings, wandering around with no awareness and scaring my husband until an ambulance took me to the ER. I have no memory of the event, but my best friend was there and said I wouldn’t talk but had a “beatific smile” on my face the whole time. I kept trying to go out the front door. I was in the hospital for three days, while they restored my levels.
I’m really haunted by this story, which happened a year ago. I celebrated my one year anniversary with a new liver last weekend, and I’m so glad to be past this darker time.
For me, not taking the right amount of Lactulose was the key. Please get a prescription and set up a system to remind you of your doses. If you need one, get listed to for transplant and consider a Living Donor program. PSC patients can get transplants much sooner that way.
All the best to you, GlasshalfFULL, and lots of healing vibes from me to you!

Thank you, thank you thank you! I had no idea this was a PSC thing. I started to get scared and still am but at least it looks like there maybe a temporary solution. Your experience really helped me access what is going to me. I am strong willed and stubborn but decided to listen to my wife to press this issue, just hope it’s not too late. I have two young kids and am trying to postpone a transplant as long as feasible. I was diagnosed in 2015. Hopefully I can get at least 10 more years (a man can hope).

Congratulations on your one year first year new liver anniversary !

Thank you! I just returned from my last ultra-sound and follow up. Looking good! The doctors are happy (and so am I of course.)
Please don’t worry that it’s “too late” - either to avoid H.E. or to get a transplant. PSC is not a great card to be dealt, but you can get beyond it for sure. It may be years before the symptoms get worse.
I don’t know where you are, but look for a hepatologist who well-versed in PSC (as you know, it’s a rare diagnosis.) Also, look for an established transplant program to get listed with. Try to find one close to you that does Living Donor transplants.This is the quickest option for PSC patients IMO.
Here’s a tool you can use to look for a transplant program near you. SRTR is a comprehensive directory of programs and statistics. https://www.srtr.org/
Look for “Find & Compare Transplant Programs”
All the best to you!

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High ammonia levels are a part of PS c. I was prescribed Lactulise about 1 1/2 years ago. It tastes like sugar so if you stir it in protein pudding it tastes delicious. Or I’ve also added it to ice tea. My doctor wants me to stay on this because he says if I start on the other medication I’ll have to stay on it forever. Before I started on this medication my family members also noticed my cognitive abilities were declining.
Hope this helps

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GlasshalfFULL, Glad your getting some good help here. Hi ammonia levels can definitely be connected to PSC or other liver diseases. I totally get being stubborn and strong willed, but use that energy to get answers from your medical staff. Don’t hesitate to replace a hepatologist if need be, and you can find others.
I was almost 20 years from diagnosis to transplant. But those last couple of years were exhausting. Had my transplant a little over a year ago, probably would have been better a year or two earlier. In my case we did a live donor. Made everything much easier.
One point about srtr.org. They do rate programs, but if one has a lower rating its important to find out why. UPMC (which has a great program) doesn’t have the highest rating, because they take patients that other centers might not. Still a helpful website, just need to keep that in mind.

Steve

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During Stage IV, my ammonia levels were high all the time. My wife said I smelled of ammonia. My hepatologist said I had hepatic encephalopathy. I was taking 23 medications. Xifaxan was one of them. Ammonia and ascites were a problem for me. It affected my cognitive ability to the point I had to give up my job as a CFO for a school district. I worried that encephalopathy would permanently damage brain cells. My hepatologist assured me that once I had my transplant it would process ammonia and ascites like normal with no lasting effect.

My clarity of mind came back after transplantation. I haven’t asked anybody if they agree, but I feel like my old normal self now. It’s been 13 years with a living donor organ. Hang in there. It will get better.

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Thank you for sharing and providing hope! Means a lot! Congrats on 13 years.