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PBC Foundation
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Urso wake up call

Well I've just had a massive wake-up call. I've been diagnosed & on urso for four years. All doing well bloods coming back with ok levels occasionally itching but not too bad Drs are very pleased with me. Annual checkup lots of other autoimmune symptoms fatigue dry eyes mouth watch my diet but managing the beast pretty ok know what I can & can't do/ get away with no real worries. However I have just taken 2 & half days to get back from Malaysia. Got caught up in the snow / cancellation flight chaos that is the beast from the east. Managed to get home last night via the good old train very cold & tired. But my baggage is still in transit & I've gone approx 24 hours without my beloved urso. I never realised how much I rely on it. Those that don't respond you have my whole hearted sympathy. One days miss & my itch has gone through the roof, I can't sleep, my urine is brown sludge & I can't keep off the loo for ' other' reasons!! Here was I wondering if I really needed it as things were going so well. Well I do I'm back on it now I'm home & I can't wait for it all to go back to normal. Never doubt it folks. Xxx

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I can relate! I had an issues last summer where I had an insurance problem and was 3 days where I took only half doses and 1 day without...I dragged myselt into the pharmacy feeling like I was nearly dead! I told them I had to have it. They made a few phone calls and got me the Urso. Keep some extra in you handbag next time. You don't want that to happen again!

Pam

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Always put medication in your hand luggage, I do along with a copy of my prescription in case I have to show it in the Airport.

Hope you feel better soon xx

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Me too Dinny. I always leave it in the box and also take my prescription form with me just in case I get stopped and they think it's contraband!! We're going to Japan in the summer and there's a whole load of generic medicines available here that'll get you into a heap of trouble if you take it there. Thankfully Urso isn't on the forbidden list but it's something I'm mindful of now particularly outside Europe.

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Hi, I didn’t realise missing them would have an effect so quickly. Just goes to show how well they work. Hope you get them soon xx

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I never put my prescription tablets in hold baggage. Always have them,and a copy of my prescription, on me at all times. I figure you never know what might happen to your luggage once it gets on that conveyor belt 😀.

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This is something I witness in the pharmacy a lot. Sometimes it’s travel, a lot of times it’s insurance hold up or doctors office. Those things are easily fixable...what my fears are is “supply chain shortages” as I’m seeing this more and more making meds not available to order from manufacture aka “manufacturer back order” 😳😳😳

I have slowly built up a two month supply now so that I can survive for a little bit if that happens. I rotate them out and will have the $soon to purchase a third month...

There is no alternative to Urso like a lot of other meds. I also keep small rx bottles with a weeks worth of all my pills in my overnight bag and car.

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Thanks for all the interest folks. Update =

I'm feeling much better now I'm back taking them.

For those of you who are telling me to carry in handbag/ hand luggage. I had sufficient plus a spare day just incase. There was no more in my luggage as I didn't want to take it all just in case I lost them & had no way of getting any more for ages on return.

Unfortunately I was caught up in the beast from the east. It took 2 & half days to get home. Which I couldn't have planned in advance for. It was just one of those things. Luckily I only missed one day it could have been 2. Xx

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I can relate. If I forget to take it in the morning I feel farigues by midday. And I’m told I only have stage 1 Pbc

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Unfortunately the symptoms don't equate to the stages. My liver is well but my other stuff is horrendous. Some don't have any symptoms really.

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Thank you for sharing that. I also take it daily without really knowing if it's doing any good. And because I hate traveling and never trust the airlines, I always have my medication in a carry on which I refuse to let leave my hands. I also bring extra of everything in case I don't get right home again. I've always considered myself an alarmist but then I hear stories like this and tell myself I'm just being smart.

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I always try to make sure I have extra medication with me when I travel in case of hold ups and also carry my repeat prescription with me in case I have to source some more. However, in the past I have missed the occasional dose but luckily have never had any effects like you've had.

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yep I doubt it every so often , go without or just forget to bring the Urso with me. I get so faint I need to get somewhere I can sit down before I fall down. I just think what a twit! and decide not to get caught out again. I find I am in a mindset daily of racing to get through things before the tiredness hits. it does anyway and overall I am definitely less productive. Well I'm a year in now not panicking as I was. And I did.... My itch is definitely present at this stage but I'm lucky I can tolerate the Urso. My condition is deemed "probable PBC" as the AMA reading is negative. A year later (I've had a biopsy and a scan and regular blood tests). No clarity still. Just wonder should I get the second opinion of a Heptologist or accept the checking by the gastroenterologist I see is sufficient. it's also possible so it was suggested that the PBC is actually PSC. I do hope not.I'd love the on going worry to go away. Worse than the itch and the tiredness! At least I too know for sure now that URSO is relevant. Just wondering anyone else with neg. AMA readings and clarification about that?

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