Itching ... ?

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Permalink Reply by sarahmom0501 on September 26, 2011 at 6:55am

Hi Stacy-

My Dr. put me on Cholestyramine for the itching.  I had tried two others before this one and this one works as long as I remember to take it.  It's a powder and you mix it with a drink.  It's orange flavor (at least mine is) and I mix it with a small glass of cranberry juice twice a day.  But it can be mixed with any non-carbonated fluid.  Unfortunately it does not 'dissolve' so it's kind of like drinking something with sand in it.  But it does work.  Ask your doc about it. 

 

Hope this helps,

Sarah

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Permalink Reply by Colleen Kaelin on October 21, 2011 at 6:43pm

Hi,

 

I think the current standard medication for treatment is Ursodiol.  Ask your doctor about it.  Hope this helps.

Colleen

 

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Permalink Reply by Joseph on November 17, 2011 at 9:38am

Hi Stacy. I'm 26 and have been living with stage 4 PSC since college. The itching was so bad for me at some points that I would make myself bleed. I have a really excellent doctor who prescribed Rifampin for the itching. Hydroxyzine is good for minor itching, but its only an anxiety drug, so it relaxes you to keep u from itching. Rifampin is a drug used to treat tuberculosis (so u might get some crazy looks at the pharmacy) but it has been a miracle for me. I rarely itch for 3 years strong. It's a little "outside the box" to take a TB medicine, but ask your doc about Rifampin.

Let me know if this works for you and best of luck.

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Permalink Reply by tatins on November 27, 2011 at 12:36pm

Hi Stacy

Yes I was on Cholestryramine for  a short while and it helped with in hours I was able to go off it when they replaced my blocked stent,,there were no side effects with this drug,,it tastes awe-full but soooo worth it,,,my specialist recommended I not get a liver biopsy because he is concerned about triggering a infection its not the best way of staging the disease properly he and the other specialist use how I am feeling and my blood work to determine the next step,,,,, I may be seeing the transplant team in Vancouver Canada this coming spring does anyone know what I should ask them??? any info would be appreciated thanks 

 

cathy

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Permalink Reply by Deb on January 3, 2012 at 9:05pm

TO: Joseph:     I itch like crazy too and wake up a few nights a week itching sooo bad.  My doctor prescribed neltronxe for itching...This drug is used for people going thru drug or alchol withdrawal.  Unfortunately, I take an axiety medication for sleep so I notice the two are not working well together.   He also prescribed Rifampin for me several months ago but I'm so afraid of the side effects.  The montly blood work, the orange tears and so on, please tell me this really did work for you.  I've done so much research on this drug and came up with nothing.  Hoping you can shed some more light and maybe I will try taking it.  I can't live like this anymore....thanks

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Permalink Reply by Stacy on January 3, 2012 at 11:55pm

Hey all -- thanks for your advice. I went to a new GI doctor recently and he prescribed me Rifampin -- but I, too, am worried about the side effects. Not to be superficial -- but my career is in Marketing (ironically) for a hospital and I never know when I'm going to need to be "in the spotlight" for various reasons -- I very well can't go walking around being orange and I'm a budget person who won't ruin clothes because I'm sweating orange. I've tried epsom salt and oatmeal baths -- they seem to help when the itching is really bad.

 

I have another question for you all. I've noticed in some discussions that people categorize their "stage" of the disease. I've never had this mentioned to me. Can anyone explain the different stages -- Stage 4 someone mentioned -- or where I could find this information? I know that when I had my last liver biopsy (probably 5 years ago now) I was ranked at a 3 on the 0 - 6 scar tissue scale. But I was also a 3 in 2001 and the doctors somehow forgot to mention that ...

 

Thanks for your input! I'm glad I found this group. I realize I'm literally teetering on the brink of a transplant / death each day (oddly enough it's good motivation to live each day to the fullest!) -- but it's comforting to know that there are others out there who truly understand what it feels like -- physically and emotionally.

 

Many prayers and blessings to all of you for a healthy 2012!

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Permalink Reply by Joseph on January 4, 2012 at 1:11am

Deb/Stacy,

I was literally itching to the point of making myself bleed before my doctor prescribed (and I took) Rifampin.  I personally have not had the effect of orange tears/sweat and I play soccer a couple times per week, so I would REALLY notice orange sweat on a white jersey (but my urine is definitely very much darker now).  Everyone is different, so I can't know if you would have the orange tears/sweat or not.  In my case, the possible costs/side effects outweighed the benefits because my itching was the definition of "unbearable".

All in all, I do highly recommend trying Rifampin and think you should at least see if it stops your itching and if you sweat/tear orange.

As for the stages, Stacy, I had a liver biopsy, they sent the samples to the Mayo Clinic and Mayo sent back a report calling it stage 4 PSC.  From what I read, it's stage 0 through stage 4, but it's interesting that you had a 0 to 6 scale. Wonder if different hospitals/organizations have different scales?

Happy New Year to everyone!

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Permalink Reply by Stacy on January 4, 2012 at 9:38am

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 Paul Hain on January 4, 2012 at 12:33pm

Hello Stacey,
Cholestyramine powder, orange flavor (Rx), mixed in water (yich!) helps. Sarna is a lotion that helps. It is OTC. Not every drug store carries it. A friend, who has had his liver transplant, took a shower at lunch time. It helped. He had severe itching. Benadryl OTC helps me. I only take it at night because it makes me real sleepy. Need to be alert during the day. If you scratch in your sleep, wear soft cotton gloves so you don't scratch yourself bloody. Itching is a royal pain in the tosh! Another medication to remember to take, lotion to put on, etc. But, it's better than scratching in public like you have fleas! God bless and good luck.

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Permalink Reply by Paul Hain on January 4, 2012 at 12:52pm

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 Theresa on January 4, 2012 at 3:54pm

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 Stacy on January 5, 2012 at 1:16am

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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