Urso: I was diagnosed with PBC last month. I... - PBC Foundation

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Urso

LindyRich
LindyRich

I was diagnosed with PBC last month. I did not have any symptoms. Then came Urso.😣. Now I itch at night, feel nauseous and have problems with anger. Too much of a coincidence for my liking.

Has anyone heard of Low dose naltrexone? 

35 Replies
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Hi LindyRich,

Sorry to hear of your diagnosis and new symptoms. I think the body does take a little while to get used to the Urso.

When I first took Urso the itching started with painful prickling. The patient information leaflet mentioned that this might happen so I wasn't too worried even though it was horrible. After some time it lessened and went away. I only get the itching intermittently now, mainly at night.

Do get in touch with the PBC Foundation, link above, if you haven't already. They are really helpful and informative.

Take good care of yourself, Cx

Can't see a drug that helps aids cancer etc helping your bileducts myself else we would all be on it.Just give it time, are your tablets coated? As the coating can cause issues. X

LindyRich
LindyRich in reply to teddybear7

It is used in very small doses for auto immune disease. 0.5 to 4.5 mg.

I have read about it for Hashimotos. That claim it can help PBC

Hidden
Hidden in reply to teddybear7

Hello teddybear7.

Seems that a lot of medications that were originally designed for one thing tend to then be used for others.  The urso was originally developed for cholesterol formed gallstones and not PBC.  

My original urso was film-coated tablets and I preferred to the ones I have to take now that aren't.  I never had any issues with my original tablets that were branded URDOX 300mgs until they were withdrawn and I had to take another.

Karlimc93
Karlimc93 in reply to teddybear7

It's dose work I'm on it been fighting for this drug for the last year been on it for 3 year was paying for it privately. It helps the itch and its help my liver from getting worse my bile ducts have been damage to much but they won't get anyworse the LDN IS AN AMAZING DRUG.. Don't knock it till u try it 

LindyRich   .   I have no answers, but we  are there for each other. Hope you feel better soon. 

I'm another person who started itching WITH urso and not before but the itching stopped in a matter of days.  Try not to worry.

Hi I was diagnosed last November and on 4 tabs daily. That happened to me but it got better and to be honest I don't think it has anything to do with urso. I think more likely to do with our bile ducts. However don't stop urso without giving it a decent try. I did and my bloods greatly improved. I'm no expert but Rob is so ring PBC and leave him a message. He will get back you you. Also loads of folk on this sight are great too x

Rob?

I'll try and get info for him. He is in the office but really has expert knowledge bear with me watching grandchildren one poorly. X

Thank you. Hope your grandchild is better soon.

Ring this number and leave a message he will get back to you. Leave your number as he is often out st meetings this may be best way to get him. Helped me loads.

07894 238413

robert@pbcfoundation.org.uk

Thank you again. 👍

No probs as we are here for each other x

Hi limdyrich

Ive been taking urso for 17 yrs..

But had the nausea and itchimg before and since taking the urso.what made you go tobdiagnosis for pbc?...i know it seems odd but i thimk it could be coincidence.....i was told back 17 years ago by my first consultant that it takes a long time for the toxins to build up to the point where the itch starts.so although its not impossible it is more likely to be the pbc than the urso.i wish you best wishes coming to terms wiyh pbc.cazer.p.s.might be worth asking to get blood tests repeated as my ltfs rise and fall.and the itch (and feeling rougher)tends to correlate with them

This of course may not be the same for everyone

teddybear7
teddybear7 in reply to cazer

My itch is worse when my bloods are bad too. X

cazer
cazer in reply to teddybear7

At least it makes me feel  that im not imagining things!!! Cazer.

Hidden
Hidden

Hello LindyRich.

Itching is one of the common symptons of PBC alongside fatigue.  After I started urso December 2010 I did think for a few months the itching felt worse but over time my 24hrs a day itching that I had from early 2010 until around 2011 has altered in severity and these days although I can feel prickly at times during the day, I do get the itch later at night.

I mentioned a couple months after starting on urso to the consultant that I thought the itch felt worse and he said if I wanted to see if it was the urso to come off it.  I never did come off it as when I received the first blood results after 2 months on urso and saw how good they were I continued taking.

The first line of defense for the itch tends to be for a patient to start on Questran brand name or the generic name in the UK colestryamine.  I believe the medication that you have mentioned isn't tried at first in the UK though I have read it has been taken.

Personally I don't want to take any medications without a good reason (only take the urso, have since diagnosis and that goes for over-the-counter items including paracetamol unless necessary).

Hello lindyrich

2 years ago I was diagnosed with PBC and was very frightened and stressed until I got to understand it better.  I experienced lots of different symptoms which I thought might be the Urso or the PBC but which I now think were due to stress.  Fortunately I persevered with Urso and it brought my lft numbers right down and many of the symptoms cleared up as I calmed down.

Let a little time pass and you will gradually get used to the PBC idea and as you relax into it, your symptoms might start to improve.  This group is so supportive and we wish you all the very best.  Keep in touch and let us know how you are getting on.  Big hug.  Diane

LindyRich
LindyRich in reply to liver-bird

Thank you. I appreciate your kind words. 

I went to the dentist today to have a tooth out.

I always take diazepam when I have dental treatment as I have a phobia.

It did nothing for me this time. I came out with the tooth intact. How sad is that.  Wonder if the Urso stopped it working!,,

I itched before I began taking Urso.  When at first I took Urso - the full dose of 4 x 250 tablets - the itching increased exponentially.  So I took one Urso tablet for the first week;  two for the second week; three for the third week; and the full dose of four since then.

I also take Questran light.  What helped reduce the itching the most for me was the pharmacist at Boots.  I was taking 3 sachets of Questran light a day, one sachet after each meal.  She told me to  stagger the three during the day so that I covered most of the day.  Up until then I was OK during the day but itched in the evening.  Since I've been staggering them throughout the day, the itching in the evening has almost stopped.

LindyRich
LindyRich in reply to Pat_H

Good idea. I will try what you did. 1 a day for first week. 2 a day for second week etc. That makes sense to me. That's  what we did with thyroid meds.  Logical.

Yes I heard of the drug they are doing two larger studies on Chrons and fibromyalgia because it really seems to help. But if you try it talk to your dr. I'm thinking about taking the drug but with my medications. I had to decrease my dose of Urso and am doing much better

LindyRich
LindyRich in reply to Evaj3

Are you in the UK.

Evaj3
Evaj3 in reply to LindyRich

No I live in canada

LindyRich
LindyRich in reply to Evaj3

Ah Canada. I love Canada. People are really friendly and your milk tastes delicious.

In my experience it's  harder to get new treatments in the UK. I had to fight to get Armour Thyroid instead of Thyroxine, which didn't  do it for me. So I'm not holding out much hope for Low Dose Naltrexone. 

That's too bad my naturopathic Dr will get it for me. However if you take too much there is a black box warning for livers so you need to be monirored

LindyRich
LindyRich in reply to Evaj3

Thanks for that. I am still reading up on it. There are ways to get it privately with my doctors approval of course. I have noticed the warning about livers. It is more likely I could get it for Hashimotos rather than PBC. I will keep doing the research. I'm happy someone else has read about it. Thanks for your input.

Live well

I am low dose naltrexone.. I had to fight for a hole year to get this in NHS I had to pay for it for 2 years. I'm in 50mg.. This stuff is the best works a treat for AIH... 

LindyRich
LindyRich in reply to Karlimc93

There is hope for me yet. I'm a bit surprised at the dosage you are on. I thought auto immune dosage was 0.5 to 4.5mg

Evaj3
Evaj3 in reply to LindyRich

Yes it is. I use higher doses in ER as a nurse to reverse narcotic overdoses. I would check for low dose

Karlimc93
Karlimc93 in reply to LindyRich

Trust me I was shocked to I was like no that's way to much.. But she says less won't work.. Because of how severe my itch is 

This is where i found the information

lowdosenaltrexone.org%2Find...

Sorry. This is this correct link lowdosenaltrexone.org/index...

Senior moment

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