Heptologist comment on brain fog: This is why... - PBC Foundation

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Heptologist comment on brain fog

Shulsey profile image
12 Replies

This is why I have brain fog. I guess it can vary from one patient to the next. But, it isn't from inflammation of the brain in my case. He placed me on Xifaxan to help break down the ammonia & other toxin. Due to the expense of this medication my insurance does not want to pay for it. Now I am being placed on something called lactulose so I will have multiple bowel movements daily. I also suffer from ulcerative colitis & already have three to four bm's daily, usually before noon😒. Not sure how well this is going to go, but we will find out I guess.

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Shulsey profile image
Shulsey
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12 Replies
bartholomewpatri profile image
bartholomewpatri

I'm so sorry you're suffering so. Its frightening to see how sick we all will become with this disease...I am in the early stage. I cannot afford the biopsy.

Shulsey profile image
Shulsey in reply to bartholomewpatri

Things are so different where you're from compared to here in the states. I pray daily for a cure or at least something that will slow this down for those of us who seem to progress faster in this disease. I pray for us all who are suffering ❤️

bartholomewpatri profile image
bartholomewpatri in reply to Shulsey

I too am in the states . I live in tulsa, ok. I hope these medicines help you.

Shulsey profile image
Shulsey in reply to bartholomewpatri

I apologize, I was assuming you were in the UK. LOL silly me.

JohnMalaney profile image
JohnMalaney in reply to Shulsey

Medical treatment is n the U.K. is free at the point of delivery and there are no charges for diagnostic or surgical procedures. In addition prescription prices are fixed and patients who require several health rescriptions can purchase quarterly or annual season tickets. Anyone on state benefits or over pensionable age and children do not pay for prescriptions

Shulsey are you a Mayo Clinic patent

Shulsey profile image
Shulsey in reply to

No, Im a patient at the Indiana University Hospital in Indianapolis Indiana. I travel three hours to see my heptologist. Luckily I have family about thirty minutes from the hospital so I stay with them when I go. This way I don't have to spend six hours in a car going there & back. I stay overnight.

in reply to Shulsey

Yes you are lucky. I trave 3 hours but I stay in a hotel the night before. I love Jacksonville compared to the swamps. Your portal is just like mine. That's why I asked. Also your prescription for miralax is exactly like mine. Written the same way. I have another apt July 26. Oh well. We shall see if my prednisone moon face gets lowered

butterflyEi profile image
butterflyEi

Hi Shulsey

I hope this works for you. stay strong.

:-)

Belliver profile image
Belliver

Hi Shulsey, so annoyed that insurance company dictates drug protocol! ( gone thru that myself). Examples of letters to insurance companies are on internet so that you can expedite getting the medicine your doctor wants you to have & not the insurance company fee schedule....ask doctor for help to write letter to insurance company re inflammatory bowel condition & taking a drug that exacerbates that condition might help get different drug OK'd.

Shulsey profile image
Shulsey in reply to Belliver

I sent a message to my heptologist about that. I think they're discussing the appeal of the medication due to my having UC.

Belliver profile image
Belliver in reply to Shulsey

Hope it works! There are some states in this country that do not allow drug insurance companies to change prescriptions but I guess you & I don't live in one of them thar states (I'm in FL)

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