Newly diagnosed & started Urso

[Carol60]

Hello. I have recently been diagnosed with PBC; a disease I'd never heard of until now. I'm thankfully in stage 1 with just inflammation and a little fibrosis of the small ducts and hope to maintain that level for the duration. I do seem to be rather old (nearly 60) for an initial diagnosis and wonder if others have been diagnosed past 50 and what your experience has been? I just started Urso and it is definitely NOT agreeing with me as my symptoms seem worse. I'm wondering if the Urso has helped alleviate your symptoms? I have been experiencing increasing fatigue,no stamina, night-time itching, elevated LFTs and soaring levels of cholesterol. Is it your experience that the Urso helps with the LFTs and limits progression of the disease, but doesn't really give much symptomatic relief? Again, it's such a wonderful thing to find a community of people sharing their knowledge and experience with this disease and treatments. My thanks in advance for any assistance with my questions. Best to all!

[MK3117]

Hi Carol!

I was diagnosed-early stage 1- at age 53, in January. Fortunately it was found via routine blood work to ck on cholesterol, and ultimately confirmed by biopsy. To date, I am asymptomatic. Your experience sounds fairly typical, as you will discover as more people leave replies here. Someone is bound to recommend something for the itching. It's a good group, and you'll learn a lot.

I began on URSO immediately after diagnosis. Yes, I had upset stomach, irregularity, etc. I take 3 tablets/day. I found that it bothers me less when I take following meals.

My LFTs have dropped a bit, but was told that it may take a while to stabilize-same as with any other symptoms that may be/have been evident. Everyone responds differently. My hepatologist told me that the URSO won't cure it, but slows the progression of the disease for most people. And in time may inhibit some of the symptoms. Especially for those diagnosed early- like you!

Be well!

[Carol60 in reply to MK3117]

Hi, MK. Thank you for responding to my post. I have been reading the older posts and learning more about PBC and Urso. I've been symptomatic for a while, but nothing like the reaction to taking the Urso. Ugh!

I broke down and called the PA who advised I see the doctor day after tomorrow. She said most people don't really have more than a day or two of adjustment to the Urso...so it may be something else going on???

I didn't take the Urso this morning and things seem to be settling down a little bit. So, I have at least some anecdotal evidence that it is a reaction to the Urso.

I am so thankful to find a community of people with this disease. Hoping it gets better from here on.

Thanks again and best regards!

[Twinkle26]

Hi Carol60,

I had read that different makes of urso had different side affects, I'm taking the real urso I will call it (ursofalk) and I only have one box of this left but the rest of my prescription is a generic one as the chemist said she only had small amounts of the ursofalk but the generic one was the same. I have had some upset tummy but not too bad now I'm not too sure about taking the generic one as the itch is not too bad and it's only been a few weeks since starting urso. The foundation are great so join them for great info and help, they did say that it can take up to 3 months for urso to get into the body properly.

Good luck

[Rockie]

Hi there. I am 75 years old. Was diagnosed 9 years ago with PBC, but I think I have had it long before then. My symptons were loose stools and itching. So after 9 years I had to accept to cope with this rare disease. Just know you have my sympathy

[Carol60]

Peridot, Rockie, Twinkle & MK: Thanks to everyone of you for taking time to reply. It is truly helpful to see so many participating in this community. For a supposedly "rare" disease, it certainly seems like plenty of sufferers in the States and the UK.

I am off the Urso (per my doctor) as he believes "something else may be going on." So, I'll see him tomorrow and will most definitely ask about the dosing and brand-name Urso (Actigall, here in the States) since many anecdotal reports of the generic being more difficult to take.

Again, so good to know there are people out there scratching their way through this

Warm regards to all.

[SimbaTutor]

Carol60, I was diagnosed at age 57 with stage 1 PBC. It took several weeks to adjust to the urso meds...my adjustment was complicated by adding hbp meds at the same time and coming of hormones I had used for 10 years. My liver numbers kept climbing for several months, then reversed and gradually returned to the normal range. I also experience soaring cholesterol numbers...finally got them back to normal range on this last labwork.

Yes, the urso helps with the numbers but it takes several months for the benefits to show up per my doc. It also helped me with the symptoms once I adjusted to it. I do better if I take all 3 tablets at the end of my breakfast and supper. I take 1500 mg each day now.

The diagnosis was a surprise for me as well. I have learned to do less and be satisfied. I do best if I rest in the middle of the day and set up my schedule so that I stop for an hour from 2-3 each day. This allows me to continue working full-time...I just have to pace myself.

I encourage you to find what works for you and don't be discouraged that it takes weeks to begin feeling better when you want it to start happening in days. My liver biopsy was end of May and I spent June and July that year wondering if I would be able to teach again since the fatigue, itching and stomach symptoms seemed to last forever. By August, I was improving and my numbers had started downward. Take the time to find your way. I was blessed with a supportive husband who encourages me to rest, helps with tasks as he can (he has health issues as well) and doesn't judge when I am not able to do what I want to do. We just take it day by day and life is good.

[Carol60 in reply to SimbaTutor]

SimbaTutor: Thanks for your encouraging response to my post. It's good to consider that a bit of patience (not my normal tendency) may be required to get to feeling better. The doctors have begun to titer my dose so I'm hopeful that will get me on the Urso without so much trouble. Thanks again and best regards!

[littysgirl]

I was 66 when first diagnosed. I started having elevated LFTs about 2 years ago and my doctors and I have been trying to figure out what the problem is since then. There is still some question about what the problem is, but the liver specialist I went to leans towards PBC. It's actually easier to treat than the alternative which is auto-immune hepatitis, so we're trying the Urso first. At my first follow-up blood work after 3 months, there was no improvement with my LFTs so I'm not sure about the future. My doctor said that not everyone responds quickly and to keep taking it and check at 6 months. I didn't really have symptoms of the disease that I recognized, except occasional crazy itching - which I still have. I have to say, though, that I am always tired. Always. I was never a high-energy kind of person but this is ridiculous. I can fall asleep anywhere, any time. Even times when I'm enjoying myself, in a quiet moment, I'll have this wave of exhaustion, that makes me just want to lay down somewhere and go to sleep - not normal.

[Carol60 in reply to littysgirl]

Littysgirl: Thank you for taking time to respond to my post. I'm hoping the new approach to getting me on the Urso (i.e., titering me up at one-quarter dose intervals over the net 4 weeks) at the correct dosage will work.

It does seem that everyone's experience with PBC is a bit different but that overall people see improvement in symptoms and/or slowing progression if they stay on the Urso.

I would be happy if the itching, horrible fatigue, and digestive upsets will lessen. So tired of feeling tired seems to be the common refrain.

Best regards.

[Shine1]

Hi again,

Yes I have found Urso has helped with the LFT results, but not the symptoms such as itching, joint pain, reactions to food and chemicals etc. It's like working out an ongoing puzzle!

[Mrsfancypants]

Hi. I'm newly diagnosed 4 days ago only had one dose so far of urso, I'm bricking it, terrified and can't sleep xxxx

[Mrsfancypants]

I'm 50 in 2 weeks

[Carol60]

Hi WendyHelena,

Just noticed your post and wanted to offer you my support. I know the diagnosis can be terrifying, particularly if you've been healthy prior to this and WHAM-BAM it's on. Hard to realize that you have a chronic, perhaps dangerous, perhaps benign, rare disease.

It's been 6 months since my diagnosis and I'm still struggling with fatigue and itching and gastric problems but...the good news is after months on URSO all my liver function tests are back to nearly normal. So, it can and often does improve once on URSO.

Like you, I was so worried and anxiety-ridden at the beginnning of this journey. The support of others here and in "real" life have helped me realize that this disease is just another challenge in life and one that can and must be addressed. I hope you get to feeling better on the URSO and can get some rest. Talk to your doctor about your anxiety and sleep issues, s/he might be able to help. Take good care of yourself and know that you aren't alone. Best, Carol--

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