Make the itching stop!

General
1

Hi everyone, I have not posted a question before but I am in need of help and help badly.

I am 28 years old and was diagnosed with PSC approx 10 years ago. Since diagnosed I have also been diagnosed with ulcerative colitis and rheumatoid arthritis.

Currently I am in between doctors and don’t have any medical professionals i can confide in. I was taking gabapentin for the itching and that worked for a year or so but then began not working. I was recently put on zoloft to help the itching. It worked for a while but since being put on it I have had many episodes of fainting or almost fainting.

The itching has since come back while being on both medications and it is much worse.

Any help would be appreciated

2

Briarrann,
When my itching drove me the craziest, my dermo prescribed Mometosol (sp?).
It is a steroid based cream and worked wonders after a few days. I put it on my most troubled spots, wrapped/taped saran wrap around it (yes, those were the instructions) and loved the results.

Jeff

3

I am honestly itching everywhere and all the time. I would probably go for a bottle of cream a week if I went with something topical. Thank you for the suggestion.

4

Unfortunately it is highly individual as to which remedies help one’s cholestatic pruritus, they take time to kick in, and most are locked behind a prescription.

Perhaps the best over the counter short term fix if you are having trouble sleeping is benadryl. Take before bed so that the itching won’t wake you up. Your body gets used to it over time so this is only a short term fix. There are stronger prescription versions, but like Benadryl they will make you very drowsy.

Some people may respond to a change in diet. Consuming dietary fat causes a hormonal response that induces your liver to produce liver bile. A low fat diet may help to improve symptoms. No promises that this will help and this type of diet can cause a lot of health issues and will exacerbate PSC vitamin deficiency issues long term.

UVB phototherapy works for some people. An over the counter source is the sun. You can also get a prescription for a UVB light. Most tanning places are primarily UVA rays and won’t help. All of these sources can cause skin cancer over time.

Cholestyramine is a prescription that works for some people. This can render a lot of medications ineffective so it is important to figure out if there will be a conflict.

Rifampin out of all the options seems to have the highest rate of knocking out cholestatic pruritus. This is a prescription antibiotic that doctors are sometimes wary of using (it has raised LFTs for a few edge case patients).

This itching seriously sucks. Get in touch with a doctor ASAP and try to knock this down before it gets any worse. Good luck!

5

Briarrann,
Sorry you are having such a difficult time with itching. I know exactly how you feel. Nothing topical worked for me either. We each have found a remedy that worked best for us, it’s so individual in nature. I tried everything topical but the very best I found that eliminated the itching 98% was Rifampin. I took 300 mg twice a day. Ask your doctor about prescribing this. You will be hopefully pleasantly surprised how well it works. You mentioned you were between doctors. I would strongly recommend that you find a hepatologist connected with a transplant center to take care of your care regarding PSC. GI’s are just not the type of physician one should go with to treat PSC typically. I wish you improved health as you seek out a solution to the itching. Also, keep in mind that with increased itching, this is an indication that your bilirubin has increased. It may be time for another ERCP procedure to open up those bile ducts so they can drain.

Mark
PSC 2011 / Liver Transplant 7-2015

6

Hi, Briarann –

I too experience significant itching. I went through a period with my Dr where he’d prescribe one or another medication (rifampin, zoloft, urso, several others), it would work for a few weeks, and then the itching would be back. Nothing I’ve found is perfect, but here are the things that work the best in my experience:

  1. benadryl pills at night if it is keeping me awake
  2. benadryl lotion when the itching is more localized – as large an area as my whole calf
  3. keeping very well hydrated
  4. getting plenty of sleep – my itching is noticeably worse when I’m tired
  5. keeping my fingernails very well trimmed (2x per week and more) – with me, often scratching makes it worse, and if I can’t effectively scratch it really helps

By the way, if you end up going off the zoloft, I found that was very unpleasant. I felt very dark for several weeks after, and I had only been on it for a month or so. If this is your experience, just know it will pass.

7

I had good success with Mometasome(sp?). It was prescribed by my dermatologist.
After several days of applying the cream (steroid) on my itchiest patches,
the itching lessened to a wonderful, livable extent.
Jeff

8

My husband took Cholestyramine. Worked awesome. I’d say he started to get relief within a couple of doses, but quit taking it when his itching/associated rash was completely gone. It did make him kind of gassy- guess it tends to cause constipation. Hope you find some relief. My husband was about to go stark raving mad before he got some relief.

9

My husband had INTENSE itching that was keeping him up at night for the past year…he took two showers a night…had scratching and scars on his legs…it was awful. I called and asked for Cholestraymine…(PREVALITE)…it began working THAT NIGHT!!! He takes half a little pack in water…he burps one time…thats his side affect;) it slowly decreased his itching every day after that…it has been a week and a half. It is so nice to lay beside him and feel him peacefully sleep. Sleep is when your body heals and I wish I would have called to get it a year ago.
It is worth a try!!!

10

also…it is very inexpensive to get this med. (there is generic…but it has more salt so watch salt intake)

11

A lot of people love cholestyramine. I have never had to take it, but I like that fact it is there if I ever need it.

Mommymoses, glad your husband got relief.
Jeff

12

I finally got relief from itching from Rifampin, an antibiotic that is absorbed. I am having side effects therefrom such as coughing but so far worth it because I failed cholestyramine, zoloft, and everything else tried including all creams. I know how tough this problem is and suffering for about a year before I got an effective treatment was unpleasant, plus it increases your chances at skin infections. But finally got relief on it.

13

Endrun,
I too was only able to find relief from itching by taking Rifampin. I was on 300 mg twice a day for 4 years before transplant. You know, I never thought much about the coughing but now that you mentioned it I too had coughing at times while on it. I don’t remember it being bad though. The relief from the itching was worth it to me so I probably didn’t think twice about a cough. I’m glad it has been a help to you.
Where are you in your PSC process? Have you had your transplant yet or are you still in the early stages of the disease?

Mark
PSC 2011 / Liver Transplant 2015

14

Ok thanks for your message. Actually I would not consider I am early stages of the disease since I had bacterial cholangitis in late 2008 which was a year that saw cholecystectomy due to terrible gallbladder disease. For two years I have lost considerable weight and I do have considerable muscle wasting at this stage. My MELD score is only about 16 but clearly, this is a disease that has taken enough of a toll thus far I would have to say not the early stages. But I just got through a very nasty experience at a transplant center that simply, as I would understand it, didn’t care about me as a patient. I had a hepatologist who held appointments with the computer and I just happened to be in the room. I had a Social Worker who did the most underhanded, backstabbing things behind the scenes so as to cover up her own foibles. The nurse seemed confused all the time about everything, and this place had a requirement for Psychiatry that really made no sense to me nor objectively but was used against me by this Social Worker because I expressed a negativity about Psychiatry from the start. So then on another board I was booted AFTER a whole bunch of folks who couldn’t find it within themselves to offer support to me and instead preferred to villify me and paint me as the bad guy, the guy who was not cooperating and compliant, and was complaining about nothing. I was called literally everything but a “child of God” yet refrained from calling anyone else any names. So that’s gratitude and justice forya. Bottom line is I am ten months after referral to the first transplant center, and the thing I have to show for it is medical clearance which will be good enough to get listed at my new transplant center, but not there since I was undermined deliberately and in a very literal sense quite viciously by folks supposedly tasked with caring for patients–not good enough to get listed there. Not good enough to be tried on Rifampin for ten months whilst I literally tore up my arms and legs every single day during that time. Not good enough to be treated like a human being–just treated like a piece of meat, maybe, if that standard was reached even. Questionable if that standard was reached in my humble opinion. Think that about describes it. Cheerio!

15

Wow! You’ve really been run through the ringer endrun. I’m so sorry you have had such a bad experience. I trust you will have a better outcome at the new transplant center. I do encourage you to take a trusted family member or friend with you that can help be your advocate and keep you on track if the conversation gets tense. We all need someone at this stage in the sickness. I’ll certainly be remembering you and hoping things go well.

Mark

16

I already had one appt. with the new center. They speak to you like a human being, which is something I was not used to experiencing for ten months. So yes there is reason to be hopeful, along with the fact the screening tests are transferable and they don’t require Psychiatry and all that B.S. I wish there were standards these places have to follow but they each cook up their own recipe and it seems, depending on how they make the dish, either throw it in your face or invite you to sit down and pull out the chair for you. Incredible.

17

Well they reneged on the Psychiatry appt.–now they say it is necessary. Go figure. And my MELD doubled to 30 so now they are cramming all consults into one day(Aug. 1) before they discuss me for listing, which will be on Aug. 7. I will have my second support person with me on Aug. 1 so hopefully that will help me get listed. I should have been listed months and months ago.

18

endrun,
It does sound like you are really progressing with your PSC at a MELD 30. I do hope you get listed very soon. Be assured of our support and prayers for you during these days. Try and exercise, eat plenty of protein if you are experiencing muscle wasting and begin preparing your check list and bag for when the day does come and you get called. If you need any suggestions about a packing list I can post one on the forum. There’s packing for the patient and your spouse or family member, etc. that’s going with you needs to have a list to be able to pack quickly when that day comes. The very best to you. Let us know how things go. Make sure you take your support people with you to all your consults. More than one support person gives the staff a good broad perspective of your support system. Keep your cool and just answer their questions the best you can. Don’t fall to pieces if you can help it. They are looking for stability. Take care.

Mark
PSC 2011 / Liver Transplant 2015

19

I have presented to them two support people. They appear to be happy with that. The last one was listed as the primary support person. No, I do not fall to pieces, but unfortunately you cannot avoid sometimes people who simply should not be employed in a particular position. There is no room for kindergarten games in this arena–it is a matter of life and death!! I do not have a family member or spouse–the closest thing I have to this is a stuffed animal. And trust me, these days my stuffed animal looks much healthier than I do!! Sure, if you want to make suggestions about a “packing list” feel free. I am hoping to get a call today telling me I am listed–today is the day they have the “big meeting” to discuss my listing. I know all about the protein and yes my muscles are wasting. I used hemp protein and somehow one of my blood tests came out positive for “cannabinoids”. Do I smoke weed? Nope. Do I eat hemp in a protein powder for protein to counteract muscle wasting? Yes!!

20

Endrun,
Here’s the packing list my wife came up with to be ready for the transplant call. I hope this helps.

Mark

If your surgery is going to be somewhat far from home, pack as if you are going on vacation.

The caregiver/family who takes you should be prepared: *(Invest in a rolling storage bag ahead of time)

All current meds
Glasses case or contacts supplies
Camera to document the entire process, beginning to end
Journal or notebook
Blanket and pillow - overnight stay in a waiting room(?)
Overnight bag with everything…toothbrush, ear plugs, eye mask, or whatever you need to sleep, etc.
Change of clothes, hairbrush, etc. (I packed at least a week’s worth of clothes in the trunk of the car)
Reading or occupational materials, crafting, sewing, crossword puzzles, etc.
Familiar music or comforting book
Slippers
Cash
Snacks, mints
Bottled water
Thank you notes, pen, return address stickers, stamps, address book if needed
Cell phone and CHARGER
Laundry detergent

The patient should pack:

All current meds, med list.
You will PROBABLY need your preferred laxative because of the pain med you will be on
Glasses case or contacts supplies
BIPAP machine, if applicable
Family photo
Lots of extra underclothes
Extra t-shirts, extra pajama pants
***IF THE INCISION LEAKS through the bandages, you will need someone to do extra laundry for you.
Robe (?)
Socks
Slippers or sandals or crocks
Toothbrush, toothpaste, comb, brush
Mints
*Chapstick - a fresh unopened tube
nail clippers
shaving cream, razor OR electric razor, charger, aftershave
hair dryer
favorite shampoo or hair styling products, if needed
Phone, charger, ipad, ipod, laptop, etc.

For the hotel: (We were away from home for about 3-1/2 weeks!)

Your favorite bath tissue
Your favorite kleenex
Box of baby wipes
hand sanitizer
Laundry bag
Ziplock bags, different sizes
Your own pillow
Some favorite kitchen “things”: sharp knife, cutting board, etc.

*I made my packing list and taped it to the inside of a kitchen cabinet. Only a few months later, I was so glad I could just grab it and pack up!