Has anyone ever "gotten off" Urso?

My son had Lupus and has since passed away. Twenty years ago at age 46, I had my thyroid removed. This year, I learned that I have PBC in the earliest stage. I take natural thyroid and Urso. I am doing well so far. I often read of people with serious diseases such as Crohns or Lupus who claim to be off all medicines by adhering to strict diet (the author of "Against All Grain" - Danielle Walker) . Since PBC is also inflammatory, has anyone managed the disease through diet and lifestyle changes such as yoga, acupuncture, meditation and exercise?

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  • Hello Sissymcc.

    I think taking urso for PBC (I was diagnosed December 2010 when I was 46) is a bit of a 'catch 22' situation.

    I somehow don't think it is known at probably certain stages of the PBC how we can really be with or without the urso. I believe that for some of us never taking the urso if asymptomatic we might never need to take it, that is of course if the bloods were monitored at intervals for specific changes). I also believe that even when we develop certain symptons (back in early 2010 I started to itch badly and at the time also had fatigue that is said to be 2 of the commonest symptons of PBC), things might never change regardless but ultimately they can. My bloods have never returned to normal in the 6yrs I've been taking the urso nor are they expected too but they are certainly better than they were back in 2010.

    I don't think diet is going to change very much as in PBC it is said that specific antibodies that are said to be the AMAs (anti-mitochondria antibodies) that are causing it. I think the only thing diet can do is improve our health so we don't start to develop other health issues. Also it can make us feel better. My diet was never full of what is termed junk food or fast food, etc pre-2010, I always took care of myself but since being diagnosed with PBC it has made me wonder...was it all worth it?

    There is said to be certain foods that we can have that are supposed to be classed as 'anti inflammatory'. Onions is one. Coffee seems to have been mentioned quite a lot for this property and I did once post an article on it (you'd have to search my posting via my username). I did see on British tv (I am in the UK) last year that viewers were taken to Italy and a scientist showed some research she had done regarding coffee and stated clearly that drinking coffee can in fact help with inflammation in the liver.

    I do think in the case of Crohn's Disease it is more than likely a condition that is best controlled by diet.

    I am not a believer of a drastic dietary change now I've diagnosed PBC as any form of diet has some temporary impact on the digestive system. Not sure if a good idea with PBC.

    I've never done yoga, acupuncture, etc in my life but I am a staid walker (more when the weather is warmer and the nights are lighter).

    I made certain lifestyle changes myself after diagnosis. I was fortunate that I could quit a demanding shop manager job and go back into working in the voluntary sector, that made me feel much better and I am certain that is how at some point during 2011 fatigue seemed to vanish. (I do get tired odd days in the afternoon due to broken sleep at night as itching continues and for me it is every night around 11p.m. until around 6a.m.)

    In the past I've read books on dietary issues, etc but have to say that I often find myself thinking and then questioning things and I often think a lot is unfounded.

    Me personally I'll stick to sensible eating with the odd treat (life wouldn't be worth living without the odd portion of ice-cream now would it??), I'm not doing so badly at present.

  • Thank you, Peridot. What a thoughtful, helpful answer!

  • Urso slows down the progression of PBC. So I don't think it's something you want to stop taking.

  • Peridot. Thank you for sharing your very useful knowledge of PBC you have built up during the years. Our prognosis are very much the same. I sleep much better now a days, but take a strong sleeping pill and for at least 6 hours I am relieved from the itch. Bath in Epsom Salts. Creams with no perfume and still my body is full of marks from scratching, but I know I must be grateful I only discovered that I have this PBC in 2009. I am now 76, so life is not always easy, we just have to make the best of it.

  • Hello Rockie.

    Good to read that at present you are sleeping 'much better'.

    Like yourself I take care what I bathe with. The only perfumed bath products I use are natural ones and not the artificially made perfume (or parfum). Don't know if you are aware but if you live near a Home Bargains, they sell Epsom Salts for bathing in a large bag at the cost of think it was £2.99. They also do 3 others. I have tried the Himalayan Rock Crystal Salt but have to say it doesn't dissolve completely in the bath so makes the bath feel gritty. I just tend to stick with the Epsoms myself when I am that end of town as I know a well-known supermarket that begins with a T were last year selling exactley the same product for over £8 a bag!! I bought one when it was half price but then felt like I'd been cheated when I found it on sale elsewhere for under £3.

  • Hi Sissymcc. Before diagnosis, my Liver Function Tests were elevated for 3 years. Upon diagnosis I was given URSO and my blood tests returned within normal range and have remained that way for 4 years (expect for 1 test that the Doc thinks was a glitch). So, if you can tolerate it (some can't) why would you not want to take URSO - it is the only drug available for us. Since joining this site I have done a lot more reading online too, and bought books to educate myself more on auto-immune conditions (I'm hypothyroid with PBC) I paid to see a Nutritionist who confirmed what I had read, that gluten is like 'throwing fuel on the fire of auto-immune disease' so I have decided to adopt a gluten free diet, I also take an excellent quality pro-biotic and Vit D supplement.

    Any advice you are given on the site will not resonate however, if you do not believe in it, i.e. if you haven't researched about this for yourself you are likely to dismiss what I have said as a load of nonsense lol. So, the best advice I can give you is do loads of research on auto-immune health and you will come to your own conclusions. I feel the changes I have made are benefiting me, I feel fit and energetic and have no symptoms of either condition....and long may that last. Good luck finding what works for you, especially yoga and meditation and they will help stress levels. xx

  • Thanks, Katherine. I too have adopted a gluten-free diet and no alcohol. I don't salt my food anymore and try not to eat meat and fat. I eat some chicken. I feel great. I have right shoulder pain which I think is referred from my liver, so I do yoga and acupuncture for that.

  • KatherineMPBC I agree with you regarding the gluten free diet. For me it settled my bowel troubles I had due to the bile from the bile ducks in the liver. As for the itch, I am still praying for an answer to that one. Just good to feel other people understand what we go through,as this is a very isolated illness

  • Interestingly i too have right shoulder pain. Never considered it to be refered pain before.

  • Hi buy and read curing cortney its a great book hope it helps and let me no how u get on plz x

  • I was unaware that pBC was inflammitary, in fact my drs tell me I have never had inflammation markers in my blood tests. As far as I'm aware, the only thing that impacts this illness is urso, ( at the moment in the UK) if you could do it yourself, with diet etc. We would all be told to do it. So if it's the only thing that can slow it down, then I suppose it's just got to be done. X

  • Many thanks just shows they don't tell us a great deal. X

  • When I see posts for newly diagnosed people, I routinely reply citing the experience of my son, who although not having PBC, does have PSC (Primary Sclerosing Colangitis), a very similar liver condition that is also thought to be of an auto immune nature, as well as Ulcerative Colitis, another auto immune condition. He has been successful in using diet, vitamins/supplements and most importantly Low Dose Naltrexone (LDN) to return to a normal condition. All his liver function values have returned to normal for about 1.5 years now, and all his inflammation markers are normal as well, and he is symptom free. Go the the LDN Foundation web site; read their materials and links to Dudley Delaney's web site and blog; and Google Dr. Burton Berkson and watch videos about him, particularly his 2009 presentation at a National Institute of Health conference, and also read his books on LDN, Alpha Lipoic Acid and B-Vitamins, (related diet strategies) and you will find his regimen of vitamin/supplements that improve your immune system, and the method of action of these items to help your body's immune system return to normal. Gluten and dairy free diet can help to reduce leaky gut and related intestinal irregularities that are typically at the root cause of many auto immune conditions. Some people also believe that a non-GMO diet will also help. Join the Yahoo LDN User Group and you will receive emails from LDN users and questions from inquirers about the application of this inexpensive and low risk/side effect drug in addressing a range of auto immune conditions and returning your body's immune system to normal or more normal condition. Many doctors do not know about LDN, or, since it is used "off label" for auto immune conditions, will not prescribe it, so do not be surprised if you get a negative reaction from your doctors. Find one who is LDN knowledgeable, or search the above resources about its availability not through your current doctor.

    The vitamin/supplement regimen I refer to can be found by reading Dr. Burton Berkson's book on Alpha Lipoic Acid, as well as information about using Low Dose Naltrexone as an important means to re-regulating your immune system in Elaine Moore's book on the Promise of Low Dose Naltrexone Therapy.

    It takes a lot of time and effort to do the research and investigation, but with main stream medicine offering very little help to halt the progression of many of these auto immune diseases, I believe the above items offer a reasonable and low risk strategy to address auto immune conditions. You can contact me if you have any questions, and I will try to point you in the direction of additional resources that will help to answer them.

    I think you are on the right track in trying to use diet and other lifestyle strategies to reduce inflammation and the progression of your disease. While URSO will not cure PBC, it will thin liver bile and thus reduce inflammation in the liver. LDN, while it will also not cure your condition, will re-regulate your immune system, and has shown to be effective in slowing or halting auto-immune progression of many conditions, and thus is a broader, whole body approach to inflammation reduction. (If you suffer from a thyroid condition and take thyroid meds or supplements, be sure to read Dudley Delaney's web site about LDN and the protocols to use in starting LDN use and re-regulating your thyroid supplements.) Using diet and vitamins/supplements compliments the efforts to reduce inflammation throughout the body, and those techniques you cite such as acupuncture, yoga and meditation, through stress reduction, also compliments an inflammation reduction strategy. I hope you follow through with all the inflammation reduction strategies you find that work, and think if you do, you will have taken the right steps to address your condition. To answer your initial question about getting off URSO, if you try the other strategies listed above, and find that they are working to reduce inflammation throughout your body, I would think you would have a good opportunity to then try to reduce or eliminate URSO usage.

    Warren

  • Wow, thanks, sick. I recall reading somewhere that, unlike with PBC Urso did not prove to be effective for PSC. Does anyone out there know if this is true? I might be totally incorrect about that. I will start my homework right now researching all the info you have given us.

  • I believe you are correct about Urso and PSC; it has mixed results for PSC patients. My son's hepatologist recommended he take it, but that was after he changed his diet, and took LDN and vitamins/supplements, and had improvements in his liver function values and inflammation markers; so it is difficult to say whether Urso is doing anything in his case.

  • I am in early stage one for 22 years. I am gleuton free for over thirty. Why would you ever want to go off Urso when you read the devastating effects of higher stages and you are going well on it ?

  • Well, I am wondering if having a good diet would ever quiet the inflammation which is pbc.

  • Yes, my numbers are not very high. I just have right shoulder pain, slight itching and slight fatigue along with Raynauds and dry eyes which I manage with Systane drops and gloves

  • 'Early stages for 22 years' - there's hope for us all!!! Do you have any symptoms of PBC, I'm assuming your Liver Function tests remain within normal range each year? x

  • Yes, my numbers are not very high. I have right shoulder pain, slight itching and slight fatigue along with Raynauds and dry eyes which I manage with sustained drops and gloves

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