I realize my discussion title could be taken various ways but I do have a concern. I have noticed over the last few months, that I easily bleed if I bump my hand or finger on something and it doesn't have to be all that sharp. Does PSC cause ones skin to become "thin or paper like" that it is susceptible to this? I also notice that wounds do not heal very quickly. Any thoughts on this would be appreciated.
When liver isn’t functioning well, associated with deficiencies of fat soluable vitamins ADE&K.
Our son does bruise easily as well. We are told can be caused by the liver disease itself, as well as by the medication he is taking. Are you on immune suppressing medication? Our son also takes a long time to heal.
Just prio to the PSC and UC diagnosis, our son was also diagnosed with a skin blistering disorder that is autoimmune in nature. It is basically a mild form of skin fragility. Our son scrapes very easily, lots of cuts and bruises and scabs. This skin disease causes blisters when friction occurs, but so far, thankfully, his disease is very mild, and we have only seen blisters during flare ups of the skin problem. In fact, we have noticed somewhat of a pattern. When we have seen blisters appear, usually on his hands and knees, as the most friction occurs there, they pop up for a couple weeks, then seem to calm down. A week or two after that we see a flare up of his colitis, followed quickly by a rise in liver enzymes. We would guess the immune system must be marking something specific that is common to all three diseases.
I am sorry to not know any of the science behind it, but we certainly identify with the skin problem. |It is worth noting that cirrhosis has already begun in our son.
Our little guy is 10, and he sometimes seems like a walking boo-boo!
I knew that cuts, scapes.....do not heal as quickly as they used to. I had chalked that up to the fact I am not as young as I used to be. Curse of getting older, I guess.
But I have not noticed any tendency to bleed more easily. Luckily I am not on any medication. Meds might be a factor in bleeding more easily.
Jeff
Low Platlet count, perhaps? My partners count keeps going down and is now at 95. He bleeds profusely when bumped slightly and even has nose bleeds, sometimes spontaneously but mostly from blowing his schnozzola. Ug. PSC sucks. It is called, Thrombocytopenia which is the medical term for a low blood platelet count. Platelets (thrombocytes) are colorless blood cells that play an important role in blood clotting. Platelets stop blood loss by clumping and forming plugs in blood vessel holes. I don’t know the science, but PSC causes problems in this department. Did I mention that PSC sucks?
Dolphin, I get the nub of your gist.
Dolphin5 said:
Low Platlet count, perhaps? My partners count keeps going down and is now at 95. He bleeds profusely when bumped slightly and even has nose bleeds, sometimes spontaneously but mostly from blowing his schnozzola. Ug. PSC sucks. It is called, Thrombocytopenia which is the medical term for a low blood platelet count. Platelets (thrombocytes) are colorless blood cells that play an important role in blood clotting. Platelets stop blood loss by clumping and forming plugs in blood vessel holes. I don't know the science, but PSC causes problems in this department. Did I mention that PSC sucks?
I too have the thin skin problem. I'm 2yrs after transplant. I believe the skin problem is multi-factorial. All of the above discussions are applicable. My trouble is aggravated by aspirin and prednisone.
Both Walgreens and Band-Aid make a powder that is effective in stopping the bleeding when applied to the wound.
Stay Strong!
EAD3
As we all know by now, the liver is an incredibly important organ in our body. When it is sick, as with PSC, the production of protein, which is the building block of healthy skin is drastically reduced as are red whole blood cells and platelets. In addition, some of us have to take medicines, such as Prednisone, that cause skin thinning.
Your skin tears easily because it is very thin. You bruise easily for the same reason, plus your blood does not clot quickly. Bruises happen even without knowing that you bumped something. Cuts take a long time to stop bleeding and to heal. Nexcare brand bandages are extremely flexible and waterproof. They are very helpful with wound treatment. My doctor put me on Plavix, a blood thinner after my transplant to prevent clotting where the hepatic artery was re-connected. After three years, they took me off of Plavix and my bruising and slow wound healing came to a stop.
The bad news for me was that my skin would not get as thick as it once was. I has improved, though and I would consider my skin thickness to be in the low normal range.
when we take these vitamins from pharmacy -as a pill or liquid-, can liver absorb/process into these vitamins in that way? i mean take a vitamin is useless?
Windward said:
When liver isn't functioning well, associated with deficiencies of fat soluable vitamins ADE&K.
I took vitamins the doctor prescribed during my PSC. They did not make my skin get thicker. The disease slows down the amount of replacement skin cells you create. That's what makes your skin get thinner. Prednisone also makes the skin get thin and along with Plavix, makes the skin tear easily and bleed longer. I have my new liver for 4 years now and my skin is near normal thickness.
Your vitamins do not get absorbed normally due to liver cirrhosis. My doctor said multi-vitamins could cause abnormal bile duct cells to grow and mutate, increasing the risk of bile duct cancer. I recall that he had me take Calcium Citrate with Vitamin D, 1000mg twice daily and vitamin C. He had me get at least 15 minutes of outside daylight (even if just hands and face in the winter) to help absorb the Vitamin D.
Be careful as you can not to bruise or get cuts. I was terrible at this and ended up having the Wound Clinic at the hospital bandage and treat me so I did not get infections. Remember, after transplant, you thin skin will start getting thicker, maybe not for a year, but it will get better. God Bless!
Paul,
Thanks for your post. I'm glad to report to you that I did indeed get my transplant last July 23rd. It's been a little over a week now since my 6 month point and I am doing well. As for the skin getting thicker, my problem is my belly is getting bigger. I weighed 172 before surgery but hit 200 this morning. Still being on some Prednisone I am having a time resisting the urges to munch. It's been giving me a fit. I am walking on the treadmill 30 minutes a day but I've got to do more to get this weight down. Take care and thanks!
Mark Wilson
PSC 2011 / Liver Transplant 7-2015
Wow Mark, that is great news! Now that you have a new liver, life is going to get better for you. Prednisone, even in small doses can make your appetite go wild. You will shed that post transplant weight gain. I asked my internal medicine doctor about a bulge I have under where the left and right scar exists. It feels like a lump about 8" wide and 2" thick. He said it is a surgical hernia not uncommon with such a wide abdominal incision. I called the transplant clinic and they made an appointment for me to get examined by a surgeon. It does not hurt. It just protrudes. So, we'll see what, if anything they want to do about it. I do not recall doing anything that could have caused this during the first year after transplantation, but I'm telling you and others about it so you can be aware and not do anything that might split the tender healing tissue around your incision.
1 Like
Code - fat soluble vitamins (ADEK) can only be absorbed with dietary fat. As PSC progresses and bile flow is restricted, your body has a hard time processing long-chain fat that requires liver bile to be broken down and absorbed. The problem is that most dietary fat is long-chain fat. The work around is to supplement with medium chain fat (either coconut oil or MCT oil) as this fat does not require liver bile to be absorbed. This fat is absorbed very quickly so it makes sense to supplement this fat at the same time as your fat soluble vitamins. See https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2015/11/AlnounouArticle-April-06.pdf for more information.
1 Like
Paul,
How long has it been since your transplant and are you still on Prednisone? If I understood my hepatolgist correctly, I believe they may keep me on at least 5 mg of Prednisone the rest of my life to prevent recurrence of PSC. I hope I understood him wrong, but not sure. I'm on 3 MG of Prograf both morning and evening as well as 360 mg of MyFortic both morning and evening, along with all the other vitamins necessary especially the high dose magnesium and calcium. If you or any of the others were not aware, you can get a $0 co-pay card for Prograf, MyFortic, Cellcept, etc. from the manufacturers web site. This has really helped me out. You do though have to have the doctor write the Rx requiring the name brand with no substitutions indicated on the script as well otherwise they will substitute for generic. Just the Prograf and MyFortic alone if I had to pay out of pocket would be around $1,500 a month.
I hope you are right about the weight gain issue. I went out and bought a new belt today as I was on my last notch. Also, I'm sorry to hear about those lumps you are feeling. I haven't noticed that but will keep my eyes open. I have been very careful to obey the lift-limit restrictions during my recovery. I don't want for anything to happen that would cause them to have to go back in and do any surgery on me. I have noticed the sharp pains from time to time which they told me would come as things heal up and the nerves start working again. The scar tissue forming, etc. makes the incisions especially sensitive as I'm sure you well know. Take care.
Mark
PSC 2011 / Liver Transplant 7-2015
Paul Hain said:
Wow Mark, that is great news! Now that you have a new liver, life is going to get better for you. Prednisone, even in small doses can make your appetite go wild. You will shed that post transplant weight gain. I asked my internal medicine doctor about a bulge I have under where the left and right scar exists. It feels like a lump about 8" wide and 2" thick. He said it is a surgical hernia not uncommon with such a wide abdominal incision. I called the transplant clinic and they made an appointment for me to get examined by a surgeon. It does not hurt. It just protrudes. So, we'll see what, if anything they want to do about it. I do not recall doing anything that could have caused this during the first year after transplantation, but I'm telling you and others about it so you can be aware and not do anything that might split the tender healing tissue around your incision.
Wow can’t believe I haven’t read this thread. But yes my skin is super thin really bad on my hands. They look terrible almost like a lot of burn marks. Seems now the entire top of my hands are scar tissue.
I get that too. Every iv stick leaves a bruise the size of a tennis ball. Check iron levels? I used to be anemic, i had to take 4 iron pills a day for like a year. Since then it got a little better. Also, take the big centrum pill vitamin. My doctor said the pill is better then the chewy ones because it has minerals. Vitamin D is also good. See if that helps.
Side note. Prednisone sucks. I was on 60mg and trying to get off from last july to January. Didn’t gain any weight though, just felt horrible.