I need to vent about my experience with PSC

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I’m feeling really bad right now and just want to share my situation. I went to the doc in 2021 because I was suddenly nauseous every day. They ran a million tests, told me I had Crohn’s disease, and sent me on my way.

After more blood tests, my liver enzymes were insane, so they sent me to a liver specialist who diagnosed me with PSC after performing a liver biopsy.

I immediately lost my job, and had to go about a year and a half without any medical attention. I was still feeling very nauseous every day, but otherwise felt in mostly OK health (I did go from 160lbs down to 125lbs, which was scary).

After finally getting a good job with a “platinum” healthcare plan, I started to resume my search for medical care. I was able to get on Humira for my Crohn’s, and was able to see a liver specialist. I thought I was finally going to get some answers to my illness.

The liver specialist told me the dangers of PSC, that I was high-risk for cancer, and that she wanted me to have screenings every 6 months. I left the appointment feeling really taken care of. My hospital is one of the best transplant centers in the USA, so I thought I was in good hands.

Except it turned out that the liver specialist who takes my insurance isn’t actually “in network”, and that short conversation I had with her cost me $500. I was devastated because I can’t afford this price for treatment, especially every 6 months.

So I went back to my insurance to ask for help. They told me that I don’t need to see a liver specialist, and that I only need to see a gastroenterologist. When I told my gastroenterologist this, he disagreed, and insisted I see a liver specialist.

I worked with my healthcare advocate and a health insurance representative, multiple times for over a year. I was told that although the transplant center I go to is “in-network”, that the individual doctors each have their own negotiated rate.

I got really depressed and stopped searching for medical care for a while. It became too scary and stressful to do alone.

It’s been about 2 years since I saw a doctor for my PSC. My gastroenterologist won’t acknowledge my illness at all, he only wants to talk about my Crohn’s, which is thankfully in remission.

I am still nauseous every day. My gastro says it’s the PSC, and that he can’t do anything for it. I haven’t felt normal in over 3 years. I really miss how my body felt before I got sick. I feel like I’ve aged decades in just a few years. I’m tired all the time and I don’t have the energy to keep fighting my insurance company.

I made an appointment with a new gastroenterologist, but there is a 13 month wait where I am (Washington, DC). The appointment is for January of 2025 and I’m hoping this doctor will be different and willing to oversee my medical situation.

This week I had my first “flare up” of PSC. I became lethargic, supernaturally tired (as I describe it), and felt pain in my upper right quadrant. My skin feels like ants are crawling under it, and I’ve already dug holes all over my legs and feet due to itching. I feel like I’m going crazy.

I am looking forward to my appointment in January hoping that I will get some answers. But for now, I just have so much fear. My mother died painfully and horrifically of cancer, and I am so scared that the same thing is going to happen to me.

Anyway, thanks for reading. I’m not sure how active this forum even is these days, but it’s nice to be among people who understand.

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Hi- being active on these groups is the first step to advocating for better care for yourself. This group is less active than the Facebook groups, if you aren’t in them- get in them. It saved my life. I was really sick with my UC and psc both flaring badly, cancer antigen test climbing by the hundreds, and had permanent ostomy bag surgery scheduled for may 2018, after consulting with many surgeons and picking one out. 2 months before surgery I went down the vancomycin rabbit hole, if you haven’t looked into it, do it. Advocate for better care, switch specialists, and research vancomycin for psc and ibd. Because you have IBD you are more likely to respond. It doesn’t work for everyone, but it works for many with PSC + IBD. With psc, it’s worth a shot, we don’t have many options. No matter what you do I wish you well and please find better doctors, you deserve to be monitored carefully to keep you safe and healthy.

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I am so sorry you have gone through all this. Patients should not have to fight so hard to get help, it’s exhausting physically and emotionally.
Please do not give up your fight. There was a wonderful lady on this forum named Cynthia who sent me incredible information on Vanco when I first posted about my son’s diagnosis. She has advocated so hard for her daughter and seen incredible results. I would be happy to forward the information and research she sent me if you’d like to read it, just send me a direct with an email address I can forward it to.

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Your gastro is correct that you need to be hooked up with a liver specialist. The typical gastro is not qualified to deal with PSC. Can’t your insurance company direct you to a liver specialist that accepts the insurance with a reasonable copay? Perhaps ask the prior liver doctor that charged $500 if she can recommend someone more affordable. My son’s specialist (her group) went out of network on the insurance and she literally worked incredibly hard to find us a doctor in network who was a transplant specialist in network. Most doctors understand what you are dealing with and will try to help.
In terms of Vancomycin, I agree it is something you need to try. But, finding doctors who will prescribe it can be a struggle.

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I would highky recommend that you check out PSC Partners seeking a cure. This is a patient-centered group that is like no other.

The in person conference in Phoenix just ended (i am on my way home now), and there is so much there, not only in terms of support but medical research and avid PSC practionners.

Please check them out on line. There are also regular zoom rooms to connect with specialists and others, and the community is always eager to help with connections.

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Thanks everyone, I appreciate the input. Unfortunately I am not on Facebook so I never knew about the forums there.

And thanks, Birdy! I have been a member of the PSC Partners for a couple years. I never knew that they had zoom sessions to connect with specialists, that seems incredibly helpful, and I will definitely look into it.

To answer some other questions, my insurance won’t offer any help. The liver specialists that are in-network are all out of state, and I don’t drive, so I can’t get to any of them. They simply reiterate that I only need a gastro for this disease and not a liver specialist, so they don’t make any accommodation. The doctor who initially charged me (Erinda Stefi at Medstar Georgetown) $500 for the visit hasn’t spoken to me since I mentioned being unable to find coverage for PSC.

I understand oral vancomycin has helped a bunch of people, I’m definitely interested in it. But I need a doctor first.

Also, since I believe in naming and shaming: my insurance is Blue Cross/Blue Shield CareFirst BlueChoice Platinum 0 (ridiculous name). The hospital is Medstar Georgetown in Washington, DC.

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Ophedrysaestivus,
However you can, definitely get to a hepatologist/ liver specialist. GI by definition are generalists; you need someone who thoroughly understands PSC, not one who has just heard of it.

In the best of all worlds, the liver doc will communicate will with your GI. This will often be a hit or miss. I am on BCBS silver, and think the world of it. I am surprised and disappointed that you are having such a hard time with them.

For your itching, a dermatologist will have several options for you. I let mine know of my liver disease so he would know what was happening. The med he prescribed for me worked in one day.

To address your concerns with cancer, know that a small percentage of PSCers get CCA, and the longer you live with PSC, the higher the chance. So know that it is out there, and I understand that you have other things to worry about.

There are quite a few people on this forum who have to deal with PSC and Chrons or UC. So hopefully some can provide better advice on that than I can.

Jeff