A bit of background first :). I was diagnosed with UC at 25, and have been treating it on and off for a few years. I started on Mezzevant about 5 months ago, and its working wonders, with recent colonoscopy results being good. I've had elevated liver functions since I was probably diagnosed with UC, but kind of hid my head in the sand as I was a little immature back then. We're talking GGT over 1000 (extreme I know), plus other elevated LFTS.
I've learnt to respect the condition and decided to follow through with some more testing. I've had an MRCP, which was clear, and ultrasound, which showed some scarring, then followed by a biopsy last about a month ago. I got the results back last week, and there appears to be some early stage of PSC in the microscopic bile ducts, with the primary billiary tree clear of any issue at this stage. I have a follow up in six weeks and I'm hoping to get some more information with my doctor then.
I started Ursofalk today and my gastros request. I hoping none of the side effects hit as a lead a pretty active and healthy lifestyle. Has anyone had any experience with Urso? How long did you stay on it? The only PSC symptom I have is some infrequent URQ pain that comes and goes, not pain so much, more just discomfort.
It has been a pretty up and down few days, I've made peace with the fact the I have PSC now, and will not let it stop me from living my life as I'm getting married in November and hope to start a family in the coming years. Life is funny sometimes :).
I am on Urso. My doc doesn't really have a lot of faith in it, but it is kind of as a "might as well try" sort of measure. I haven't had any side effects from it at all.
Travis - sorry to hear about the diagnosis and congrats on the upcoming wedding. You've got the right attitude - don't let the PSC affect the rest of the things going on in your life.
There is still very little consensus regarding the benefits of Urso despite decades of research. What we do know is that high-dose Urso (28+ mg/kg/day) is a bad idea (see Lindor trial; also higher incidence of colon cancer). Anecdotally, Urso has reduced/eliminated symptoms for certain PSC patients. The latest analysis of aggregated retrospective studies has tentatively suggested that Urso is beneficial for a small subset of the PSC population. Basically, normal or close to normal ALP through whatever means reduces the rate of reaching an end point (transplant, cancer, death) for a patient when compared to a non-normalized patient within the same time period since diagnosis. The retrospective studies found that 30% of the non-Urso group spontaneously normalized and 40% of the Urso group normalized, suggesting that the Urso was having an effect on ~10% of PSC patients. While the rate of reaching an end point was lower in the Urso normalizer group out to 5 years, this rate rose to match the non-Urso normalizer group over time, suggesting that as the disease progresses, the benefits of Urso diminish.
Urso makes sense if it is reducing or eliminating symptoms or bringing ALP down to within 1.5x normal, otherwise it likely provides no benefit. Smaller drops in ALP, commonly seen with Urso, have not been associated with improved survival.
I took high-dose Urso 10 years ago when it was the accepted thing to do. These days I'm of the opinion that there are much better options for treating PSC.
My recommendation is to research the upcoming and ongoing PSC clinical trials. If a particular treatments stands out, get involved with the study or, if the drug is already available in your country, work with your doctor to emulate the trial off-label. Be proactive and don't rely on your doctor to be proactive - PSC is rare and your doctor can't be expected to be up to date with the latest/greatest research for their one PSC patient. Try to get the PSC under control earlier rather than later. The bile duct scarring is easier to prevent than heal and there is very much a point of no return when the liver becomes too damaged and transplant will be inevitable.
If you haven't already, get your fat soluble vitamins checked. A dexascan for bone density every couple years is also a good idea. Osteoporosis sucks, so make sure it doesn't happen. This is a big deal with PSC patients and a lot of doctors overlook it.
I was diagnosed with UC at about 13. I had my colon removed as a result at about 23. I was diagnosed with PSC at 29. it was early stage. I have had no symptoms for 15 years (now about 44). It has progressed according to biopsies, but still no symptoms. Was on URSO high dose for a while, then studies showed it could make it worse, so they took me off completely and now they are considering putting me back on a regular dose just in case it could help.
I am active and played a very active sport just this morning.
The first couple weeks of diagnosis, my wife and I cried a lot--everything we read "7-12 years to death or transplant." Well, that was 15 years ago.
At 84 years of age I may be one of the oldest in this crowd. I was diagnosed with PSC 14 years ago and of course was too old to be in line for a liver transplant. I was briefly on Urso but my liver specialist soon took me off it.
Fortunately the bile duct sclerosis is moving so slowly that at my age I will probably meet the end of my life of something else than the PSC. An optimistic and positive outlook in life has helped me through many problems.
My sympathy goes out to young people who are having to face this reality. Stick to this website bio-medical research in immunological is proceeding fast. Keep up living and hoping. Helping others who are as bad off or worse than you are will give the lives we have meaning.
Hi, I was diagnosed with PSC 17 years ago. Been on Urso now for probably 10 years off and on…no side effects. Also had Crohns Disease and in 2000 had removal of large bowel now have an Ileostomy…no problem. Just been through the transplant assessment procedure and waiting for confirmation to be accepted.Have faith in the system and all the best for the future…
I'm pretty positive about the whole situation, but do occasionally find myself worry about cancer. I think i'm just scared of leaving a family behind and all that.
I hoping to see a hepatoligist soon as I have a follow up with my specialist in a couple of weeks. I'm sick of the intermittent dull ache I get around my liver though, mainly at night, other then that I feel great!