1) since startin* urso I continue to have an itchy abdomen and scalp. My family dr does not think itch is related to PBC because my bilirubin is fine… I think I’m early stage. Enzymes starting to come down but the gi doc says nothing gets added or changed until we see how I do after being on it for a year….can anyone verify?
2) did anyone have PBC symptoms exacerbated by long COVID? Did anyone receive a booster vaccine to see if it helps the symptoms? My fam doc recommended a booster to help this.
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Artsy123
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Itch can often be entirely unrelated to your numbers. Mine certainly was. I love my family dr. but do not go to her with questions about pbc or symptoms. Find a good hepatologist or GI doc who has regularly dealt with pbc. It can be a game changer in how you address symptoms. Your numbers can be great, but your symptoms, itch paramount among them, can have a negative effect on your quality of life.
I've had PBC for 15 years. First you need a good GI doctor, familiar with PBC to answer your questions. Itching head and sometimes hair loss after long term use is common at any stage. I recommend , with Dr ok, adding a Hair, skin, and Nails supplement. Something with biotin. Helps with Itching and hair loss.
Also, find yourself a rheumatologist and ENT for a baseline of other autoimmune syndromes.
In time, others will follow. You need to be sure you have a medical team on board to catch them early.
thank you for your responses! I find them quite validating. I tried to talk to Gi specialist however am working up the courage to ask about hepatology referral. I have a rheumatologist who is looking at sjorgrens( lip biopsy pending) . Might wait to see things as they get ruled out. Add in long covid…. So confusing. Thanks everyone
Please don't be afraid to ask your GI for a referral to a Hepatologist. A good GI physician knows that a Hepatologist can provide you more advanced treatments and information than he or she can. This should not be offensive to them. Get that referral and go see a Board Certified Hepatologist. You won't regret it. It's what's best for YOU.
My heptologist told me that there is a medication for the itching. She offered it to me but I really didn’t want to take another medicine. Also, as your liver enzymes go down the itch should go away too
I have itching of my scalp & abdomen also. I take Benadryl for the itching. It really helps me. Why do you have to wait to see a hepatologist? Ask your PCP if the GI won't make the referral. Don't ever let a doctor intimidate you.
1 Itch is the BIGGEST symptom of PBC. Change you dr both primary and GI if they won't treat it. Find a Hepatologist who works with PBC patients. A "booster" covid shot isn't going to "help" symptoms and it's illogical to think it would.
Ask your hepatologist about taking a prescription of Sertraline or Zoloft for the itching. My hepatologist prescribed it for me and it stopped the itching immediately.
I had itching on my scalp before I was prescribed ursodiol and I used HerbalGlo pro scalp shampoo and conditioner. It relieved my scalp itch within the week after 2 to 3 washes. I have attached pictures of the shampoo and conditioner.
oh thank you I’ll give the shampooit a try! As for doctors, where I live they are very hard to come by. We have thousands in our city without drs and more will be retiring. I just saw my family dr so will space it out a bit…. But am definitely leaning towards referral to Toronto if I can in the future! Very grateful to everyone and validation as well
The reason I tell you that is he probably doesn’t have many PBCers in his clientele. But Liver itch is a side effect of many Liver disease’s.
Urso dosn’t affect the itch at all. The medical community is still learning about PBC. It’s a RARE Liver disease. So if you have questions ask a Hepatologist or a Gastroenterologist. They understand Liver disease more than your family doctor. We live with it on a 24/7 basis so we understand it even more than the Medical Community. I can say that because I was diagnosed 30 yrs ago. One other doctor that understands PBC is a Rhuematologist. They treat most of the Auto Immune diseases. I would suggest adding one to your list of doctors.
The reason he said “no other meds” is the Liver is your body’s “Filter” so most all meds go through it. About 80% of the meds can function through our liver with a liver disease. There are 20% that we shouldn’t take. Most of the meds that we take are for symptomatic reasons. As for the Covid vac’s, there’s really so much we don’t know about them yet. I’m not being “Political” with that statement I’m just saying, that is up to your individual medical docs. There are meds out there that will kill the vaccine.
Please again check with a Liver doc ie a Hepatologist or Gastro, on taking the vaccine.
Having said all this it’s so important that you ask questions to the proper specialist and not believe everything on the internet! Ask questions here too but remember “we are not your doctor”. We can help with “Generalised questions”.
My PCP expressed the exact same thing, even though I am positive for Anti-Mitochondrial Antibodies (AMA-M2) because my liver values of Alkaline Phosphate and Bilirubin are not high then he believes I do not have PBC yet I have all the symptoms. I also have SLE Lupus and ITP along with Hypothyroidism, Palmoplantars Psoriasis, Gastritis, and Psoriatic Arthritis! Many immune issue are related to Lupus! I also have PTSD and anxiety which are stresses that can exacerbate any autoimmune issues. PCP has not recommended a Gastroenterologist as of now, we have no local Hepatologist. I have been itching for over a year now in a few places, my stomach has been affected immensely! I take Hydroxyzine for the itching. Cannot take more than 1 a day. Drys me out in my sinuses area. I can only eat very few things, am Gluten intolerant, and lactose free, and eat absolutely no corn related foods!
I do take Vitamins they are recommended, as much as I stomach. Especially D, C,K, A , B12, Folic Acid, Biotin ( just learned Biotin can skew Thyroid Blood test). B-Vitamin Complex without B6 ( need to read more before commenting). Maybe completely untrue! Looking into taking TUDCA, a more natural and original form of Ursodiol sold as a supplement.
I am living on a small amount of foods, all good vegetable's , fruit , eggs, Silk almond milk, and Lactose free low fat milk, brown rice and breads. A extremely low salt diet. No nightshades, it is a hard diet to follow, but have no choice! Sorry so long. Need help, thanks in advance!
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