Hi all. I’m the father of an 18yo female who was diagnosed with UC, PSC/AIH overlap, Celiac, about 5 years ago, and Uveitis 3 years ago. Been reading and occasionally posting in this amazing place, for the past couple of years.
Throughout our main treatment was Vancomycin, which worked well, as my girl never had clinical symptoms (such as itching), and her last blood work was really good with ALT, AST and ALKP at normal, and only GGT at 150%.
5 days ago she informed me she is itching all over her body, and mostly in her thighs. She claims she is able to sleep “OK”.
My questions for those who experience the itching:
- How long does an “episode” last? or is it on indefinitely?
- Have you noticed positive or negative corelation between Liver blood work, and the clinical symptoms such as itching? seems so strange that this is happening after here best results in 3 years…
- Does it get worse?
- Has anyone tried FMT, and saw improvement after the FMT?
- Has anyone tried NorURSO, and saw improvement since?
Hello. Sorry your dear daughter is having such a time with itching. Generally when there is extreme itching, it is an indication of elevated bilirubin. What did her latest labs say about her bilirubin levels? If it is quite elevated, then an ERCP intervention is usually needed to clear blocked bile ducts. The reason for the itching is because the bile cannot flow freely out of the liver through the bile ducts and into the colon it then will leach out under the skin in the form of bile salts. Until you clear the blockage the problem will only intensify. I’d check with her hepatologist as soon as possible and ask about an ERCP. One suggestion though, unless the doctor believes it’s absolutely necessary, please ask him NOT to use stents in her ducts. They are just the ripe place for bad infections to form and then she will have double trouble. Sometimes they have no choice and then they need to change them out every few weeks to avoid problems.
In addition to the ERCP’s I was on a medication called Rifampin, 300 mg twice a day. It eliminated my itching up to 98%. I hope this is of help. Please let us know how we may help in the future.
PSC 2011 / Liver Transplant 2015
With the usual caveat that PSC differs widely for everyone, my symptoms tended to track pretty closely with liver function tests. Does she get imaging done annually? If the numbers and pictures are good, the itching may be due to something other than cholestatic pruritus. Itchy palms and bottoms of the feet are tell-tale signs it is PSC related. My personal test - if I itch a non-itchy area and it gets itchy then it is PSC related.
My PSC itching episodes were pretty strange - a slow buildup from 1pm-5pm, unbearable from 5pm-8am, then complete relief from 8am-1pm. Repeat.
Some people itch off and on, others continuously. For some it is mild, for others it is all consuming.
Benadryl can help with sleep in a pinch until something more substantial can be had via prescription.
NorUDCA is still unavailable outside of a clinical trial. OCA is available off label in the US, however one of the main side effects is…itching.
What’s the brand and dose of vanco?
Thanks Mark. Her Bilirubin is very low actually. Will keep in mind your note on ERCP.
Thanks JTB. Her Vanco story is complicated. Brand is powder form Teva. Was on 1500mg for about a year, than we got “greedy” and tried to lower dosage to 1000, and later to 500. Backfired, so we went back to 1500, and LFTs normalized again. Repeated this 2 more times over the next couple of years, always LFTs went up when we lowered Vanco. Last time we tried to lower the Vanco, when we went back to 1500, the LFTs did not go down. So we ended going as high as 3000mg (3 times daily of 2X500mg), and to that she responded, eventually. It took nearly a year.
This is just out story (and I posted this here before). But I think it is noteworthy for folks on Vanco hear this story because I often wonder if staying on 1500mg without playing with the dosage would have sparred us the need to go to 3000…
It’s a good idea to seek medical advice. However, you may want her to try a few things before you assume it’s the PSC. For instance, I have PSC, for 19 years, and have had itchy times and far less itchy times. If your daughter charts her cycle, she may begin to see a pattern, as I have, as to when more itchiness is likely to occur. She could become knowledgeable via fertility awareness methods. It’s reassuring for me to know when the itching will end when I correlate it to my cycles.
Secondly, she may find it helpful to spend some time in the sun everyday. This helps reduce itchiness for me.
Thirdly, she may find it helpful to correlate the itchiness to any spicy foods she may have eaten. For me, any spice such as cumin, cardamom, curry powder etc. can set off unbearable itchiness.
Fourthly, there are better and worse ways to deal with skin. Sometimes over-showering can cause the skin to dry out. I use castor oil as a moisturizer but she may find others which she likes.
Finally, nerves around this illness can to lead to itchiness, so it’s important she gets a positive perspective on PSC. It’s a very long-term illness for many, so best not to get too excited about any given aspect of it.
thanks Lara. I will pass the info. She is taking a lot of curcumin for her UC- maybe that’s “hurting” the itching issue? what about massage therapy? We wanted to help her relax (she is under a lot of social pressure right now, and for the past 10 years…) so scheduled a great massage therapist, but I now wonder if the treatment could backfire?
I’m sure the massage will bring some needed relief to your dear daughter. My wife and daughter’s would often rub my feet and back when I was in such distress with the itching or just the overall problems associated with PSC. It may not alleviate the itching but will bring a calm and peace to take her mind off the disease for a while. I know of no medical reason why it would be a problem to do so. I wish her and your family the very best through these days.
I’m still baffled that her bilirubin is so low with the itchiness. I wonder if she could still have a blockage necessitating an ERCP. Her body is trying to tell her something. The itching comes only from the bile salts not being able to leave the liver through the ducts. I would really encourage the pursuit of the ERCP if this worsens.
With me I would suddenly get fever & chills. The itching would correlate with the fever & chills. Usually it would hit during the day. I’d have to leave work, sleep the rest of the day & the night then I’d be fine. Stents were the ONLY thing that would stop my episodes. Antibiotics would give temporary relief until the stents were placed. As long as you get the stents replaced every 6 weeks until removal, you shouldn’t have a problem with bacteria.