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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Diagnosed yesterday


#21

The worst thing about my ercps were the calf massagers put on to reduce the chance of blood clots; the calves hurt afterwards after massaging muscles I forgot I had.

Doc, I hope your ercp goes well.


#22

Thank you everyone. 9 more days til the ERCP. Got blood work done yesterday and my enzymes went up again :frowning: so pretty bummed about that. I don’t know if it’s because I drank at two parties last weekend or the vitamin D with calcium I started taking or the new statin my doctor put me on ( instead of Lipitor he switched me to Crestor). Or if it’s part of PSC for them to fluctuate. In one month Alkaline Phosphatase went from 157 to 204, AST from 36 to 48 and ALT from 40 to 58. They were going down and then randomly went up again. I’ve been on budesonide since end of October and Cellcept since end of November.


#23

Idoc,
I hope the ERCP goes well for you. Just a word of caution though. If you ever hope to get a transplant one day, you best lay off any form of alcohol. You will never get a transplant being on that stuff and they can tell from your blood work and other tests if you are a drinker. Transplant centers have very strict guidelines in those regards. Just some food for thought moving forward. I do wish you the very best though in your upcoming procedure. Take care.

Mark


#24

Thank you! I drink socially. On those social occasions I usually have 2 or 3 drinks only once or twice per month. I will however cut down to probably 1 drink on social occasions.


#25

Idoc,
I say this kindly my friend, but you have a life-threatening liver disease. At some point it will take your life if you do not get a transplant. Every drink only pushes your liver to disaster sooner rather than later. One drink is too much and will disqualify you from being listed for transplant in most cases. Drink a strong soft drink like Mountain Dew or Sun Drop, leave the beer and liquor alone. Of course it’s your choice, but I would be failing in my responsibility not only as a moderator but a liver transplant recipient to not give you fair warning. Take care.

Mark


#26

I know Mark. I’m not sure if I have psc or aih or both yet. My doctor said I can drink in moderation. If I do have both or just PSC there is a drug in phase 2 ngm282 which shows promising results. I would have participated but they are not recruiting at this time like I thought.


#27

Hi! I have also read a couple of units occasionally is ok. But that means in a wedding, on new years eve, not monthly.

I am just jumping in to talk about the new medicine. Do you mean the Nor-urso? Or is there something else? I am really hoping for the Nor-urso for my son, 12 years old with newly diagnosed Psc, Aih and UC.


#28

Hi. Yes the norurso study is going on in Europe and ngm-282 is another drug that was being studied in the U.S. I hope everything goes well with your son!


#29

Oh fantastic, a new drug to Google, thanks!


#30

Just got done with ERCP. I have mild PSC. So we’ll see when they adjust and taper my meds if I also have AIH. Hopefully cure soon!


#31

Idoc, I am glad yours in mild mode. I hope you get good news with the AIH.


#32

Thank you. I’m just still very scared. They had to go in with a balloon because they saw mild stenosis and he did a biopsy of something. I’m still a little sore around my liver. Is that normal?


#33

Idoc,
Glad your ERCP went well. It’s not uncommon for PSC patients to get balloon dilation of the bile ducts and they often will do brushings or biopsy from time to time to check for cancer cells. This is all routine so don’t get too worked up about it. Soreness is pretty normal, especially if he cleaned out a lot of blockages, or did extensive viewing of the ducts way up in the biliary tree, at least as far as he could go before they became too small. Give it a day or so and you will be fine. Just take Tylenol if needed for the discomfort. Keep in touch with us.

Mark


#34

I would also take some ice cream if your throat is sore. (Persona; experience, of course)


#35

I have pancreatitis from the ERCP. :frowning: im so tired of this. In the hospital and will be here for a few days. Was and still am in a lot of pain. On IV morphine. I wish I never had the ERCP. :frowning: my enzymes went up a lot from pancreatitis


#36

I’m sure sorry Idoc. You hang in there. :blue_heart::blue_heart::blue_heart:


#37

Hi Idoc,
I’m just seeing your post and reading through I see it goes back to 2017. It sounds like you are settling some with your new diagnosis. For me, going on my 6th month of knowledge (diag. in Jan. 2018) I too am starting to settle some. So first and foremost, I’d like to say Hello! and that this is a fantastic forum to come to. But I think you already know this :slight_smile:

There are two PSC forums on FB - not as private of course, but loads of good information and great people.

My cousin was diagnosed with AIH back in the early 90’s. She also had UC issues and much more. Due to her health, she had her first babe via a surrogate. She had a liver transplant 10 years later and had TWO!!! babes all on her own. This is not to say there were not complications with it, but all in all, she made it happen. Her beautiful body made Life happen in the midst of so much. Including pancreatic issues, colon cancer, portal vein issues… you name it. But she did it!

Not sure if you went with the IUD. Hope it worked for you if so. In my family, our bodies reject them, fast. I was on the pill for over 30 years and went off when I slammed into almost total menopause around 4 years ago. Not sure if I regret taking it that long or not. It did assist with my wayward periods and it was the lowest dose - but … as you probably already know, best if you can avoid for many reasons I think.

God and Hope and Staying in the Fight. I’m not a religious person in the sense of God, but I do believe strongly that we are just part of a very big picture and we are pretty insignificant… lol. I find that by spending as much time in Nature and with animals and my garden - a peace like no other. Life and Death are our path regardless of how it comes about. As many have said… Live your Life! Live it as if no damn disease owns you. Yes, we know in our hearts our deep truths, but that does not mean we should not push and fight to Exist. Finally, connecting with others with PSC has helped me beyond words. Like any friendship some are stronger and than others, but when you find a connection of pure and clean and non judgemental understanding, it’s golden.

I’m early stage PSC. I currently do not have other issues that we typically see with PSC. (well I do have 3 other incurable diseases, but they are manageable so far… not sure how it will go when and if I’m on immunosuppressants, but I try not to think about such things). My enzymes shot through the roof in 5 months- May 2017 I’m fine. October 2017 not fine. Since October they have been coming steadily down. ALT and AST all in range again. ALP has yet to go below 200. I’ve done nothing different food or drug wise. I did cut back on alcohol after October, just because, and am constantly working on reducing my stress. For me, I think stress is a huge trigger. My liver is still “normal” per all tests but obviously a bit stressed out. So for now, even my hep said a drink here and there is fine, but keep it to a minimum. I have found that alcohol hits me differently (even before diagnosis) so for me, listen to your body and your heart. Our minds sometimes are not our best allies when it comes to what’s best for our bodies.
I’m sorry for the pacreatitis, I’ve read that’s kinda common with some who get ERCP’s. It WILL pass sweetie… so hang tight and keep that chin up.

Lastly, I understand that feeling of “who will want me now”. I’m very single and 53. I’m happy and content! but still, I asked myself that same question many times. Who would want to be with me into our “golden years” of 60 where I had planned to play and travel. Not possibly be sick and awaiting a liver. I know very few in my age range that did not see more issues in the first 10 years - but as you are aware, we won’t know and the disease will always dictate. I still don’t have a good answer to my question. It’s a lot to sacrifice, Money, Freedom, Mental and Physical Stress that comes with those that care for us PSCers. So right now, I just put it out there up front and center and allow my date (if I have one! lol) decide what they wish for them. The bigger issue I think… will be me allowing a person in, versus they wanting in. So… I think you are going to be just fine. And it sounds like maybe you already on the way to that. I sure hope so.

Message me anytime if you need - we all understand and in any way we can, we have your back. And this goes for everyone, truly.

Be Well and in Peace
Big Hugs and Hello’s!
Jennifer


#38

Idoc,
One question I would have you ask. Was the doctor that performed your ERCP an “Advanced Endoscopist”? If he was just an ordinary GI doctor and doesn’t do this procedure every day it really opens the door for things like this to be more likely to happen. I would always insist on a doctor that does these procedures daily to do mine and never a student doctor or resident. PSC is just not something I was willing to be a study patient for in this regards. I hope you are better soon.

Mark


#39

Hi! Thank your for your inspiring story MzzP and Mark yes on of this doctor’s specialties is ERCP. Apparently putting a balloon or stent increases incidence of pancreatitis. Feeling better since I’m IV dilaudid but skin very itchy as side effect of dilaudid snd higher bilirubin from pancreatitis causing enzymes to go up. :frowning:


#40

Glad you are feeling a bit better.

I have to say, you are all so wonderfully inspiring and supportive. I’m really loving reading everything you’re writing.