A few questions regarding follow up, advancement, and pregnancy with PSC

Hi everyone! I’ve been reading as much as I can about this disease and I have a few questions.

Besides the occasional flare up, itching and fatigue, is it just a waiting game to get sick enough for a transplant?
How often is monitoring necessary?
I’m about to get married and unfortunately my ERCP is after the wedding at Baylor in Dallas. We won’t have any answers until then. This is a bit scary. My MRCP and MRI didn’t look too great obviously. my fiancé was telling me that having his own child is very important to him. We have a son but he is not his biologically. Is pregnancy and PSC possible? I’ve already been through cholestasis of pregnancy with my son and I know how hard it is, but it’s worth it. Just wondering if doctors suggest against it or if it could do serious damage.

Emily - congrats on the upcoming wedding!

All of the practice guidelines regarding the management of PSC consider PSC a waiting game--treat symptoms as they arise, wait for the patient to get sick, then transplant. Note that these are guidelines that doctors will generally follow by default and are not hard and fast rules; patients are free to be more proactive about their treatment if they desire. I recommend doing some research on past and present clinical trials that are attempting to solve the PSC puzzle. If something resonates, try to either get involved in the trial or, if the drug is already available in your country, attempt to emulate the trial off-label through your doctor. In my case, I emulated the oral Vancomycin trials through my transplant hepatologist and the drug, in my case, was the miracle treatment I was hoping for.

As far as monitoring - it depends on how much the disease has progressed. When I was asymptomatic, I met with my doctor once a year, had labs checked once or twice a year, and had a yearly MRCP. When I became sick, doctor visits happened at least every three months with labs drawn, the MRCP happened twice a year, and ERCPs were ordered when they were therapeutically necessary (to open ducts). The MRCPs were used to track progression and in theory to spot any cancer that might pop up.

If your doctor hasn't done so, bug him/her about getting a vitamin D test. Fat soluble vitamin deficiency is a big problem with PSC and most doctors forget to check.

I was diagnosed with Crohn's and PSC in February, after having problems for several years. I am in the early stages of both and take Lialda for the Crohn's, it has really helped. I spoke with my GI doc regarding pregnancy and he gave me the go ahead. I am happy to report that I am 14 weeks pregnant and doing well. I am concerned with developing cholestasis of pregnancy but my OB and GI doc know my situation and are keeping an eye on me.

This is my first pregnancy and I don't know if/how it will affect my disease prognosis but it is worth it to me to have a baby.

Good luck with your decision!

Thank you so much everyone. Stephen you really have such an amazing empathetic way about you. You are blessing others with your kindness, including me. Ladies thank you. It just feels good to not feel uncomfortable talking about health issues… Talking about it with people who haven’t been poked and prodded for years is harder.

Jtb, I was told years ago when I had my biopsy that I was low in vitamin D so I assume I still am?? I will ask him about this!

Hi Emily. :)
As having been diagnosed last year with PSC, my GI doctor told me "not to try for a baby." They had told me that I may get a bit sicker with everything. It is a bit frustrating. We are talking about other options though. I am just afraid that I may get too sick to take care of a baby. But I have a ton of family that would help....lol
As for everything, just like everyone else, you have to wait until you become "sick enough" to get the doctors to do a transplant. For me, I am going to the hospital every two months to have an ERCP and a stent in place. I had been getting too sick to not have the stent placed in. It tends to help out only for about a month before I can start to feel the symptoms. I have the itching all the time. The only thing I never got was jaundice, all the other symptoms were there along with throwing up a lot.

I hope the best for you!