Am I the only person who gets irritated with improved results? This may sound strange. But w feeling so poorly, and having so many other bad results coupled w a bilirubin that’s now barely evelevated, drives me nuts.
Now I’m going to go into my 6 month board review, w a lower meld and a bili result which is barely elevated.
I know this sounds counterintuitive.
Curious if I’m the only backwards one here.
Eric,
I know how you feel, but believe me one day it’s going to take off and that MELD will start climbing. Mine hovered around 12 for the longest time, then in April of 2015 went to 19 and in the middle of July went to 36. Got my transplant 2 days later. Give it time, it will come. Hopefully though they will not kick you out of the transplant program with having to start back over again. One thing you could try when you have your next labs coming up, you could go off URSO for a couple of weeks, that would probably increase the bilirubin for sure. Good luck in your review.
Mark
Thanks Mark.
10 days ago meld 16 then today 12.
I’m Canadian so the program won’t kick me out as the structure is different
up North. The head surgeon and the Hep are my two main doctors for
everything, blood, scans, ercps, ect.
Just frustrating…
Both improving and declining blood work levels come with a price, so it is a matter of picking your poison.
With good blood work levels, you move further away from a life-changing transplant. And the longer we have psc, the greater the chance of CCA.
With declining blood work levels, the roller coaster is taking what could be a nasty dip, leading to more pain, suffering…
With exception points due to expire in early August, I already knew I would be very disheartened if a transplant did not occur by then. Emotionally, it would have been pretty hard to handle, in that my meld would have gone down to a 15 or so, with no transplant in sight.
Psc tests your patience, your flexibility and your sense of humor.
You nailed it Jeff.
Eric,
I’ve been experiencing/thinking the same thing and know exactly how frustrating it is. I’m tired if feeling like crap and would prefer if things would just move along. Not that I’m looking fwd to feeling/getting worse or a transplant, but if that where things are headed (and everything suggests that’s exactly where it’s headed), then let’s get on with it.
I am curious about Mark’s comment about temporarily withholding the Urso in advance of your next labs. It’s my understanding that the labs could also show the decreased Urso level. I don’t know if this is true or not - or if they even look for such things; I had simply assumed that was the case.
Also, I was not aware that the exception points expire in August, as Jeff mentioned. I presume that’s August, 2017(?) - which raises my angst level & frustration just a bit more. 'Suppose I need to review the original info again for a refresher…
Sisyphus,
I don’t ever recall any sort of lab that tested Urso levels, not that they couldn’t tell from one of your routine liver labs. That was just an idea to keep you on the transplant list, I’ve never tried it myself as mine never went down. That was only a thought.
I think the expiration on exception points is individualized based on when you were given the points, put on the list, etc. I doubt it’s set in stone as August for everyone. Not 100% on that but a good idea that’s the case.
Mark
Hey, Mark.
Thanks for the quick reply & clarification. Apparently I misinterpreted/over-reacted to the original comment about the expiration of exception points. I did not recall having seen any previous reference to that and it put me in a bit of a panic mode. Like many PSC-ers I suffer (literally!) from a deceptively low MELD score & the exception points seem to be my best hope.
Just chiming in on this impromptu poll. I have that same paradoxical reaction: I feel crummy, labs come back normal (completely normal for me often). Well then, why all this lethargy? Why this terrible itching? Etc.
I did have elevated numbers a few times the last couple of months after a couple days of flu-like symptoms then vomiting. This last week I was hospitalized with pancreatitis after an ERCP to clean out 5 areas of stone/sludge. Although I am not anywhere near recovered from that, my wife continues to point out that I haven’t had any itching since the procedure on Monday… Hm.
Hi to everyone on this thread,
I can certainly empathize with your frustration! It seems timing of transplant is a huge test of patience for sure.
I am posting a few questions here myself now that my husband and I have. We are just beginning to know how getting on the transplant list, etc, works. Our son is 12, diagnosed PSC and UC at age 8. The specialist then said he would need transplant in about 4-5 years. We have a new specialist now for about 1.5 years, who at first said the same, but changed this and now says no definite timeline for transplant. This is frustrating. We live in Canada. My son is on meds that our specialist thinks will help slow the damage. I can’t find any research to really support this. The meds are in combination to control both PSC and UC. He’s on remicade, azathioprine, urso, budesonide. He’s had pancreatitis twice already. He’s had colitis flare ups that definitely elevate liver numbers extremely, but hasn’t had that happen for over a year. Labs look good, liver enzymes slightly up, but all else good. But he gets really tired quickly. How do I know the condition of liver tissue matches the numbers?? No biopsy done for four years, only MRI and ultrasounds, which don’t seem to show much. Should we be questioning the doctors for specific details more? I don’t know if my son is on the list even yet. We met one of the transplant surgeons last year, who just said he is a low priority in the list. No score or anything like that was given. Our son is so young, and without the firmer timeline now, we don’t know whether to push the doctors or just go along with the med plan… the docs seem very convinced that the longer transplant can be delayed the better. It seems like risk assessment, which is worse, being on heavy meds consistently that might have serious side effects the longer you take them, or transplant, which apparently has its own set of really serious possibilities. Any thoughts would be appreciated! We are not really sure of anything at this point, other than we want to make sure we are 100% advocating for our son to take the best and safest course of treatment, and that we are happy that no flare ups requiring a hospital stay have occurred for a good amount of time.
Hi 3Kids,
Sorry your dear son is having to face PSC at such a young age. Often the progression of PSC in younger patients is rather slow. I trust that’s the case in your son. There’s no absolute time-table on when transplant would be needed, everyone’s disease moves at different rates. It can be going along fine (well fine for PSC) for many years and then suddenly things go down hill, more ERCP’s are needed to clear bile ducts of strictures, feeling worse, weight loss, etc. You just never know. What I tell people with younger children, let them just live their lives as normal children, do what a young person does and live life to its fullest. Their body will tell them when they need to rest or otherwise. I for one would question why the doctor has him on Azathioprine. That is an immuno-suppressant for organ rejection after transplant and also used for rheumatoid arthritis. Why is his immune system being suppressed right now? I’d certainly ask. Some of the others look like meds for Chrones and UC which make sense. And the URSO is definitely one I’d have him on. It helps to thin the bile so that it can flow around the strictures in his bile ducts better.
As far as the biopsies, they really do not like to do those very often as their is risk for infection, bleeding, etc. PSC will not reverse itself, it’s a progressive disease which eventually will lead to transplant. As far as being on the transplant list you WILL and SHOULD know when he’s placed on it. There is a battery of all sorts of tests to go through to even qualify for consideration at least here in the USA. It would be good to know what his MELD score is. Here is a MELD score calculator that we use here in the USA for transplant listing. The range is 4 to 40 with 4 being not too sick and 40 being well almost dead you might say. Here’s the link. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
I would try and make sure he stays under the care of a hepatologist not just a GI doctor or General Practioner (family doctor). If he’s having a lot of itching, and his bilirubin is getting up there around 3 or 4 it may be time for an ERCP to clean out the bile ducts. That usually makes one feel normal for a while till those things clog up again over time.
Hope this helps. We are here for you.
Mark
PSC 2011 / Liver Transplant 2015
Hi 3Kids,
I’m sorry about your son. I too am Canadian and am quite familiar with how our system works. I’m west coast. I can undoubtedly say that you would know if your son was actively listed. There could be no confusion. None.
Please ask any questions. I’ve found great comfort in this board.
Best
I cant make this up…
Feb 24 - Meld 15
With upcoming Transplant Team meetings April 16th. I did new blood work and today meld is 11.
How can it fluctuate so much. Its frustrating cause I don’t want to go there and be quickly passed through due to most recent labs.
Rant over.
E
Eric,
MELD scores can fluctuate up and down with PSC. You may have had a blockage break loose allowing more bile to flow, thus lowering your bilirubin levels. Your INR is a strong factor in the equation and it doesn’t take that dropping much to really affect the score and visa versa as well.
I was listed at a MELD 12, that was in January '15. By April it had shot up to 19 then by July 36. So yours could settle down for awhile or just start taking off like mine did. Take heart, be patient and your time will come.
Feel free to rant anytime. That’s what we are all here for, to support one another 
Mark