I need to vent about my experience with PSC

Support and Caregivers
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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.

1 Like
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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

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I live in the DC region as well. I don’t go to the transplant center very often. My gastroenterologist works with them and sends over test results. He also schedules my MRIs, bloodwork (speaking of which, I have to go get that done this week), and I do a check in with the liver health clinic down at UVA once a year. I was diagnosed with UC 15 years ago, and PSC, 10 years ago. I’ve been very fortunate that my disease has been very slow progressing, but my liver enzymes are somewhere in orbit around the moon. The interesting piece is that when I feel great, my numbers are usually the worst. Last time they were close to normal, I passed a gallstone. Those and kidney stones are the worst. But I feel and understand your frustration and depression. When I got diagnosed, I read a ton of literature. My UC is finally in remission now that I’ve been on Rinvoq for 2 years. And UVA medical just had me start taking carvedilol 6.25MG. Also, once you get past the 5 year mark from diagnosis, they told me my chances for bile cancer have returned almost to normal (something to look forward too). Stay optimistic and while we don’t have a lot of treatments, we at least have one and others are being worked on. As far as diseases go, this is probably one of the better, long term ones to have. Get your annual MRIs and colonoscopies, and bloodwork done. You just have the liver that closely resembles the DC waterworks :flushed_face::rofl:. Sometimes it springs a leak and sucks a car in.

My gastroenterologist is Dr. Tan and his practice is Gastro health. They take all insurance and he put me on the path that I’m on now. Might be worth a call. He only referred me to UVA, because he did his residency with my doctor down there and he said that’s where he would go if he had this.

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I am so sorry you are experiencing this type of treatment!! How horrible.

First, I completely understand your fears! However, there are Great GI doctors who handle PSC. The GI doctor you have must have received his license from a mail in fill in the dots medical license, please consider submitting a complaint to your state’s Department of Health. That GI has given below the standard of care of professional medical standards. That GI could have recommended a GI who works with hepatology.

I have Crohns and PSC. My first GI diagnosed me in 1997 via ERCP. He had a patient with PSC who died so he educated himself and cared for me until his retirement five years ago.

I went to the UW (Seattle) for a second opinion via biopsy.

I had been complaining of right quadrant pain after birth of first child. My liver readings were very high. Gallbladder removed. Called surgeon to complain - horrific pain was back. He said phantom pain. So, I dealt with the phantom pain for two years thinking it wasn’t real.

My primary said I was depressed after telling him I sat on lazy boy for hours with heating pad on my right side. Insurance denied payment for mental health back in the day.

I asked his office, after learning he diagnosed me with depression, to change the diagnosis and submit a new bill to insurance because I was not depressed! Insurance paid the claim after the new diagnosis code was submitted.

I asked my GI what organ is right here (pointed to liver) and told him something is wrong with it!! He did ERCP and diagnosed me with PSC.

We have to be our own advocates constantly! And these days it is worse! I had surgery and ketamine was used which made my liver toxic! Thankfully, according to the labs my blood work is back to normal.

Please consider a new GI who is knowledgeable about liver diseases. Read their bios. Look for those with hepatology as their specialty.

The GI I had the last five years would not give me a colonoscopy yearly even though it is recommended along with an MRI because Crohn’s and PSC increases chance of colon cancer. He retired!

Now, I have GI who specializes in hepatology. I explained I have PSC, and I should be getting a colonoscopy every year and that I could not make the last doctor understand that. That doctor said I only needed one every five years. (I haven’t had one in five years.)

The first question the new GI asked me, “Do you have PBC or PSC?” My response, “PSC and this office diagnosed me thirty years ago!”

He explained that the last doctor wrote PBC and that disease doesn’t need a colonoscopy every year (I’m not sure that is accurate). Anyway he agreed with me. I had colonoscopy Thursday waiting for the report.

For you to be lethargic and itching sounds like bile is in your system. Maybe you need a duct expanded, I don’t know, I am not a doctor. Please find a doctor who can care for YOU and be knowledgeable about both the Crohn’s and PSC because they are very much related. A GI is a liver specialist. If you are not on a transplant list, you may not need to be part of a system involved in that, unless you want to be there.

I would appeal the $500 charge to your insurance and cc your state Attorney General’s office. You might be surprised how quickly and differently insurance companies respond when the attorney general is included in the correspondence. You have (I believe) 180-days to appeal but you must check the back of your explanation of benefits (EOB).

Explain to your insurance company what you thought—I believe you said in your post that the hospital and medical group were in-network, and that you did not realize that a doctor included in a, in-network system, could be out of network. You may get a refund minus any deductible, of the money you paid.

It is scary. Life is scary. Pain is scary. I have had so many medical nightmares that I hit rock bottom. Please don’t ever go there! We are here for you!!

In my recovery as a survivor, I asked Jesus Christ to forgive me. Jesus is my Lord and Savior and I no longer fear death. The apostle Paul asked the Lord to remove a thorn from his side three times. God said, “My grace is sufficient, for power is perfected in weakness. Most gladly, therefore. I would rather boast in my weaknesses, so that the power of Christ may dwell in me.” 2 Corinthians 12:9.

I pray you find the right doctor. Eat well, don’t drink alcohol, walk if you can to get air and sun into your body. If you can find a primary care that does integrative medicine that is helpful. Have your iron checked and your vitamin B checked. My neurologist put me on iron for a bit and B6 and B12. I feel much better!! Blood tests do not check for iron so you must ask specifically. Integrative medical doctor I believe is the best. At least for me it has been very helpful.