Hi,
I’ve been really unwell this year with scleroderma/PBC/Sjögren’s syndrome and I also have hypothyroidism. I started methotrexate a few weeks ago and I’m trying to get used to that, and now I’ve been told after many years of dodging it, that I have to start urso as my alk phos has been elevated all year and I have a large risk of severe fibrosis. I’ve been horribly poorly this year and I’m worried about side effects on top of managing the methotrexate. Any insight would be great! Thanks Lisa
Thanks for your post. I do know that Methotrexate is used in Sjogrens to help suppress the immune system. Treating the PBC though, seems something that is equally important. It has proven that Urso is the first line treatment for it, Especially in view of your rising enzymes, I would strongly consider starting it. Even if you just take 1 pill or capsule a day and work up to the proper dose. Just remember that Urso dosage is always based only on your weight. 13-15mgs/kg of body weight. Unless the PBC is treated, it will slowly continue to progress. I know you realize that already. I am so sorry you are dealing with all of this at once, but not taking the Urso may not be in your best interest regarding the PBC. Do you belong to any support groups for the Sjogrens? sjogrens.org It might help knowing others who might be facing similar situations.
Thanks for your reply!
My scleroderma, PBC and Sjögren’s have been horribly active this year, and there is very little in the way of support for Sjögren’s despite the fact that it gives me a lot of infections as my mucus membranes are so dry. I really wanted to get to grips with the methotrexate before starting another med with all the potential side effects that might bring.
I totally understand but with your liver enzymes already on the rise, the earlier you begin taking the Urso the better the chance of your response to it. Please think about joining the Sjogrens Association. I bet you could find some comfort chatting with others who truly understand.
I wonder if this will help much but, sometimes we are given quite strong pharmaceutical drugs to take, that cause us loads of side effects. Often the side effects can be worse than the condition itself it’s always a risk benefit scenario.
However as a medication Urso is well tolerated, it’s a bile acid opposed to a strong pharmaceutical drug and if you think about it your body makes its own bile, so your only adding a bit more of what your body already gives you. ( albeit it’s manufactured) As I understand it we need it to make our own bile less toxic and damaging to us and to keep our bile flowing correctly thus keeping our bodily systems working as normally as possible and slowing any progression.
When you first start taking it some people get some GI symptoms but I found that settled down quite quickly. ( I’ve since learned that, that was more likely the fillers in the capsule rather than the medication itself, after changes in Brands highlighted it over the years)
As suggested by Donna try taking one a day and see how it goes it takes a while to get into the system so taking it slowly is better than not starting it at all. Hope that helps a little.
I can understand why you are nervous of introducing another medication, but you may be pleasantly surprised and it may only bring positives to you. You have to take a deep breath and give it a chance. Let us know how you get on. PS I take 4 x 250 Urso a day all at once after breakfast and it's fine
It used to be that the brand name Urso was quite tolerable but the various generics will never be the same. Unfortunately brand name Urso is no longer being manufactured and even with compounded no-filler Urso, it's not the same as the original. If you run into problems try a different generic is my recommendation.
Absolutely no problems taking URSO over the last 9 years and LFTs have been normal throughout, so if it works for you, there's one health issue under control which might make it easier to deal with the others bothering you. It's worth a try at least, for longer term gain. I do hope it goes well for you.
My doctor described Urso as like washing up liquid for the liver. Been on it since 2012 with no side effects. I always take it with a meal. More likely to make you feel better than worse.
Getting the right dose of thyroxine has been more difficult for me than adjusting to Urso, and being too high or too low both make you feel rubbish.
Thanks all for your kind comments.
Nervous to take urso 
Urso side effects.
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