Itching ... ?

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Permalink Reply by Paul Hain on January 5, 2012 at 1:49am

The doctors were able to tell me what stage I had from a liver biopsy. This is an out patient procedure where they do a needle biopsy through the front right side of your abdomen. They extract a small sample of you liver and a pathologist examines it. They might be able to do the same with an MRI. I really don't know about that. If you are losing weight that fast and cannot stop no matter what you eat or how much (and that happened to me last spring) you need your hepatologist to look into it. I went from 167 to 146. I have regained about 14 pounds, but started retaining fluids which I estimate at 7 pounds.

There are several causes for PSC weight loss. Be sure you are going to a hepatologist who has experience and knowledge about PSC. Many do not, because it is so rare. They refer to medical textbooks and professional journal articles. I was in an emergency room with liver failure and not one of the doctors knew anything about PSC. Another time I was hospitalized with c-diff infection of the bile ducts and the on duty gastroenterologist said his medical professor said he would never see a PSC case in his professional lifetime. That's how rare this disease is. Don't be afraid to get a second opinion if you think the doctor is winging it.

Theresa said:

What stage would I be at if I have lost about 20 lbs in the last 7 months weight continues to come off no matter what I eat.  I was diagnosed thru MRI in November.

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Permalink Reply by Paul Hain on January 5, 2012 at 2:45am

Stacey,
Do not feel shamed that you have PSC. My arms and hands are easily bruised and cut. It takes much longer to heal because of PSC. You have less red platelets to clot bleeding. (building block for new cell generation) normally form around a wound to help it heal, but with PSC that process is reduced. Washing washes the leukosites out of the wound further delaying healing. It is painful, both physically and emotionally.

I'm a teacher. When I learned I had PSC, I decided to go public and tell people about it so that they understood. I say it is a degenerative liver disease of unknown origin. I tell them it causes cirrhosis but is not caused by alcoholism. It has no known cure except a transplant. I have lived with it a long time and never get a high enough MELD score to qualify for a cadaver liver transplant. People are supportive and compassionate. I don't ask for or want their sympathy. I just want them to be informed.

I force myself to be normal and active. Neighbors and friends notice the muscle wasting and fatigue in my eyes, but I don't give up. I tell them if they want to do something positive go an sign up at the DMV to be an organ donor. I'm not above asking for help if I'm not strong enough to do a job in the yard. My doctor does not want me to drive any more because I have become so impared. People around me have offered to drive me places. Occasionally, I have taken them up on that offer. I do drive, but I stay local. My wife drives me if I need to go places further away.

Don't be embarrassed or ashamed of your looks. You are a whole person. You are what you are. Like you said, be grateful for the day and let people see your enthusiasm for life. They respect courage in the face of adversity. As bad as this disease is, it can make you a stronger person, someone who is admired for you fortitude, so don't let it get you down.
I went through the period of worrying about my fate. I could not get early death out of my head. I was angry that this disease happened to me. Then one day after months of that, I said "the hell with this. I'm going to stop my fearful thinking and stop feeling sorry for myself.". Accept what is, but don't give into it. My life and physical state got better immediately. For me, that's the only way to go. Who cares what other people think. I don't hide it, nor do I care if they pity me. I'm not looking for that. I don't like it, but that is the way some people are. So what!. If you are living near a transplant hospital, ask your doctor for a referral there so they can answer questions about changes you are experiencing and what the future holds in store. Chance are they will dodge the latter. But, they will get to know you and get you enrolled in the transplant program when that time comes.

Cirrhosis stages are not all that important. I went to a PSCPartners conference and met others with PSC for the first time in my life. We were all falling asleep and eating like birds.it was funny in a sick humor kind of way. Finally, I felt I was not alone. www.pscpartners.org I met a young man with Stage II and he was in worse shape than me with Stage IV. I have a MELD score of 16. My PSC friend had a score of 8. Physically, we were in about the same shape. He got a live donor transplant 8 weeks ago and looks good. He immediately felt his energy come back. He has a normal appetite and he can now sleep without the need for sleeping pills.

I wish you the very best. Do not ignore the spiritual you and accept that your emotional ups and downs are normal with chronic diseases. I have them. I know it, but I try not to stay down in the valley of darkness too long. Find something to be grateful for each day. It tunes up your thinking. God bless you. I'll keep,you in my prayers if that is all right with you.


Stacy said:

Hi Theresa,

Unfortunately I don't have an answer to your question. I'm still trying to figure out my stage. Hopefully your doctor can provide some insight.

 

I apologize to all for all my questions! Although I've been diagnosed for 4 years now -- I'm just not starting to be more open about having the disease -- not that I hide it from people, I just talk very "matter of fact" about it like it's ordinary to avoid pity stares and always being asked "how are you feeling".

I have found that this disease has a huge emotional burden and just wonder how all of you deal with it on a daily basis. I try to tell myself daily that "hey you're alive today -- make it great" -- but sometimes it's just frustrating beyond all reason and I've had my share of (private) emotional breakdowns.

 

One of my issues is that I have a rare form of folliculitis (inflamation of the hair follicles) -- so since about age 13 (2000) I've had random lesions and so forth on my arms and legs (very difficult to hide -- and people do stare on occasion). I had it under control for a while but it seems I get zit-like bumps on my skin which eventually turn into scabs. I was told by my doctor that due to the PSC my body's ability to heal is greatly reduced. So, while it may take a "normal" person a week for a cut to heal -- it will take me several months. Does anyone have any suggestions? I've tried neosporin and bandaids, lotions, creams, etc -- nothing seems to work consistently. I'm not sure if this is a normal issue with PSC -- but I had UC so bad that lesions were erupting on my skin and now they're just annoying. Plus the itching doesn't help as I find myself ripping open scabs during the night when I wake up itchy.

 

Thanks again for all your help and insight!

 

Stacy

 

 

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Permalink Reply by Paul Hain on January 5, 2012 at 2:54am

Cover a cut with a Nexcare clear plastic bandage. It is the toughest bandage I have found. It won't was off or peel from oily skin. Change it after a week. I heal a cut this way in about 10 days. Nexcare bandages are a little hard to find. Thy several pharmacies. Around me, Osco Drug has them.

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Permalink Reply by Paul Hain on January 5, 2012 at 1:13pm

I was on Rifampin for a while.  It did not make a big difference to me.  I had mild itching.  The doctor changed me to Cholestyramine powder.  It has few side effects and is non-addictive.  It stopped my itching.

Paul Hain said:

Hi Stacey and Joe,

I believe the rating scale you are discussing is about cirrhosis, not really PSC. Cirrhosis of the liver is ranked in fourths. Stage I is very mild, progressively getting worse in Stage II, Stage III and reaching its worst in End-stage IV. That is where I am. I appear relatively symptom free to most people, but PSC has really taken a toll on me since 2000. Someone with Stage II could be more symptomatic and in worse shape than a Stage IV. Go figure? Stages tell the amount of cirrhosis you have, not how bad your daily health is. Any stage is serious and you should be seeing a hepatologist for care. Hang in there.



Stacy said:

Thanks, Joe.

 

I was told that the rating for scar tissue is 0 to 6 (in general, all types of scar tissue -- 4 meaning cirrosis). But I just read online that liver disease has 4 stages.

 

I may try the Rifampin I was prescribed as I'm getting to that "unbearable" stage with the itching. Maybe I'll try it over a weekend in case I start to turn orange!

 

Thanks for the information!  :)

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Permalink Reply by Stacy on January 5, 2012 at 10:34pm

Hi Paul,

Thanks so much for your kind and inspiring words. I appreciate your insight and positive outlook on life. I'm known for being the overly positive person so I like to keep that going. I have my meltdowns in private! haha

Thanks also for your prayers -- I'll keep you in mine.  :)

 

Best wishes to you and prayers for improved health.

 

Stacy

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Permalink Reply by Stacy on January 9, 2012 at 9:56pm

Hey all,

Another question for you -- I'm on a roll with these, huh?  :)

After my cuts and wounds heal (arms and legs) ... I'm left with discoloration of my skin. Spots of my legs literally look like I have lepracy. Has anyone found anything that works to lighten skin tone -- or does no one else have this problem? I've tried creams, lotions, gels, pills -- everything. Even baking soda. I can't find anything that works. I used the ProActiv skin lightening lotion for a while ... but it's not strong enough to cover such a big area -- it's made just for someone's face.

 

Thanks!  :)  I appreciate you all sharing your information and experiences with me.

Stacy

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Permalink Reply by Paul Hain on January 9, 2012 at 11:16pm

My discoloration was white on a white guy. The wounds healed, but my normal color never returned. It is much more important for a woman than a man to get those blochies cleared up. I understand your concern. Maybe, a dermatologist could help.

Keep being positive about life and yourself as PSC presents more issues. I have had PSC for 12 years. It's nothing new to me. There is no such thing as a stupid or silly question. Bloggers on this site are knowledgeable and helpful, so ask whatever.

Anyone with a serious, chronic disease that says they are never depressed are lying or they don't recognize it for what it is. You are in good territory if you can have more up than down days.
Peace. Confidence.

Paul

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Permalink Reply by Todd D on February 29, 2012 at 8:44pm

I use aqueous cream, i think its also for eczema, but i find it really helps me, and you can use it as a soap as its gentle on the skin. I mainly find i wake up with puffed eyes as ive scratched the hell out of them in my sleep, and also on the same spots around my body which is a good and bad thing, least its not my whole body, but not good for the skin in that area. it doesnt stop the itching but provides a relief for maybe an hour or so, but thats better than nothing and then i dont have to take any more drugs, which im over.

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Permalink Reply by Deb on February 29, 2012 at 9:37pm

HI Todd:

Where do they sell the aqueous cream at?  I recently went to a Health Food store and bought a bottle of itch relief lotion with tee tree, e, and chamomile.  It's by dermae!  It helps relieve some of the itching when applied before going to bed but than I wake up at 3am itching my feet and legs like crazy!!  losing soooo much sleep.....had some blood work done today and waiting on results....the itching is the worse part.   Wow, i cant believe you take no drugs...thats great...i take what im prescribed and still itch.....recent mri showed narrowing of bile duct with some scarring but thats it....there has to be something else out there......

 

 

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Permalink Reply by Stacy on March 3, 2012 at 1:01pm

Hey all,

My Mom was watching The Doctors on tv the other day and they were talking about what to do about itching. Dr. Travis Stork (the ER physician) said to keep a frozen water bottle in the freezer -- and when your feet itch, roll your foot on the frozen water bottle to relieve the itching. I haven't tried it ... but just an FYI in case anyone wants to give it a shot.

Stacy

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Permalink Reply by Todd D on March 3, 2012 at 3:49pm

hi deb, sorry i meant i dont want to take any more drugs than i have to,the pills i take are for UC though i think, called pentasa. the cream i get i get prescribed from the doctor, but im pretty sure you can buy it over the counter at a pharmacy, but different countries might have different things. im from new zealand, i had a look at your profile saying the states then had a quick online search, by the sounds of it you can get it through a prescription, or have to private order it in from the uk, this site seems okay http://www.westons.com/cgi-bin/ss000247.pl?RANDOM=NETQUOTEVAR%3ARAN... but also i read somewhere that america sell it as aquaphor, so ask around and im sure yourl have some luck, it might have brand names, on the tub it says that, but i havnt checked for a brand name, will do when i get home and let you know. i use it probably twice a week and it works anywhere on my body. my docs have given me 2 types of pills to stop itching when needed if i want, i might try them next time and let you know. good luck for your results!

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