An update on how am doing OFF URSO.

[littlemo]

Hi all, just wanted to let everyone know my experience of being off Urso, now coming up to 6 months off it. I am continuing to do great from an itch point of view. I have gone from being plagued by it 24/7 (read my previous blog on this ), to having it only very mild and mostly early morning and last thing at night. At the moment all I am taking for the itch is Questran Light- one before and one after breakfast and one after supper (usually a bowl of cereal) and occassionally, one during the night ( and in the last week or so this is happening less and interestingly if have the itch in the night, its usually around 4hrs after have taken the night time (supper) dose).

Unfortunately the down side is that my LFTS are still very high (started to rise approx 6-8 weeks after came off the Urso in mid Aug). Then on 14th Dec I decided to start taking Milk thistle 600mgs daily (9 weeks ago) but sadly LFTS still high(i.e. 3-4 x the top of the normal range. My Bilirubin is raised (30 at last blood test done on 6th Feb). My Bilirubin was almost always normal apart from when I was pregnant in 2006-2007. Thankfully my Albumin however had stayed normal so thats good at least.

I am feeling more fatigued recently (for approx 2mths now) and become tired more easily and am having a bit of joint pain again, mainly wrists and elbows ( was same before was diagnosed with PBC back in 2001-2002). However, I am back at work since start of Jan, albeit only 12hrs/week at the min so maybe the fatigue being worse may just be my getting used to being back at work. Another reason could be that I have an underactive thyroid and may just need the extra bit of thyroxine my dr prescribed today as my last TFT (Thyroid Function Test ) was normal but on the lower range of normal. I had been on Thyroxine 75mcgs daily, she has increased this to 100mcgs daily, so have started taking that from today so watch this space! In general though I do actually feel much better off the Urso than I did on it and would be very reluctant to ever go back on it. However I am due to see my consultant start of March and will discuss all with him and let you all know the outcome of that. Hope you all are keeping as well as you can. Keep Healthy and Keep Positive. Take care of you and yours. Bfn

[Hidden]

Hello.

Sorry to read your LFTs have taken a turn since you stopped taking urso.

I have had a bit of an up and down since starting urso Dec 2010 with my LFTs but the ones finally taken last month (for the last two times I've had to return as they had been missed! Without print out I wouldn't have been any wiser as GP didn't seem to notice! I had to ask if I'd had some of the print out missed), mine are back on the decrease. I didn't take much notice when I got the print out as these days a quick glance seems to be all. It was later on I wondered about them so got them out and found out that they were even better than the best May 2012.

I have had the itch from the year I was diagnosed so it is now almost 3yrs with it. I have to say that a yr on from starting urso, I did go through several days where I didn't have the itch and then it would return but I've not really had many where I've just had one itch-free day in about 8 months now but.....

......I did experiment myself from February 2012's blood results which were not so good (had started to increase again) and in the month prior to repeats May 2012 I took milk thistle alongside the urso and did get pretty great results following.

I didn't take milk thistle every day afterwards and Oct 2012 the bloods started to increase slightly again. I decided to restart milk thistle before last month's repeats just to see if they were making some difference. In my mind they are making some difference but I am also taking the urso also.

I did read on this site about a month ago that someone was asking about when we taken urso and it seems to vary from once to about four times per day doses. I did take my full dose (2 x 300mgs) at morning as had been mentioned and I noticed I was itching during the day for the few days so reverted back to one at morning, one with evening meal.

In the last week I have been taking half tablets, morning, noon, just prior to tea and then after tea and for me it seems to be lessening the impact of the itching at night more of recent. I've also felt much better and I am pretty sure it is down to small spaced doses.

I know some of you on here will probably say that I shouldn't be chopping the tablets in half but at the end of the day I am taking the full dosage and with urso I don't think it matters if you are just over a 150mgs or just under each time it is taken. Plus I know that the ones I am taking (Wockhardt pharmaceuticals) aren't available in the 150mgs tablets and I'd rather not rock the boat and get a GP script for 150mg tablets by some other company as I know for a fact that the packaging on the ones I have been getting altered Sept script and I only noticed as I started with the same side-effects I had on initially starting urso and it wasn't until later Dec I felt back to normal again.

Littlemo have you tried taking half a dosage of urso in very small doses just to see if that makes any difference to the itch?

[littlemo in reply to Hidden]

Hi Peridot thanks a million for all that info. When I was given the diagnosis of PBC back in 2002 I felt like my whole world was falling down round me. I, like many I expect, looked on internet when the possibility of this as a diagnosis was given to me by a medical registrar at my local hospital. That was my big mistake as basically read (with the info available at that time) that I could expect to live 10-15 before I would need a transplant! So given I was then a mum of a 6yr old girl I was devastated thinking I might not be around long eough to rear her take her to and see her through all her milestones in life.

By the time I got to see the Hepatologist and was given the diagnosis I burst into tears. Thankfully he was a very wise and gentle man and said to me very calmly "....do not worry at all about having this disease I have patients in their late 60's, 70's even 80's with PBC who have lived very normal lives not even knowing they had it, you are young ( was just 31 at the time ) and have your whole life ahead just go out and live a normal life we will keep a close eye on how your liver is doing just make sure to attend your appointments you will be fine...."

So that is exactly what I did. It is only in the last couple of years specially last yr that I have even bothered getting copies of my blood results this purely for my own knowledge, (maybe in future I can use it to do some research into this disease with a lot of help form more experience researchers than me !). In hindsight in relation to the meds have used specially for the itch I wish I had kept a diary so assess any pattern to when it was mild, moderate or really severe and unbearable. I commend you as you do seem to be doing this.

I did find out though over the years what things made it worse ( think put that in a blog one time ) and since I have been off the Urso I truly cannot believe how much more mild and tolerable it is. So therfore I would hate to go back on the Urso and have the itch back to way it was. At its worst 2011-20212 it was making my whole life miserable and my quality of life was rubbish as I was so isolated. I stopped going out in public because never knew when it was gonna start and as anyone who suffers with the dreaded itch knows its extremely difficult not to scratch when you feel like there are millions of litlle crawlies in various parts of your body and all at the one time!Hence I had to go off sick from work and as say stopped going out only went out when absoutely neccessary (i.e. school runs, shop etc).

Problem is in order to stop my liver being destroyed further may have no choice but to go back on the Urso but will definately try taking it the way you do. I know thats the way I took it at the start but was then told I could take it all at once (this advice I think was given to simplify things for me as I was also taking Questran for the itch and with taking it you have to take other meds either an hr before it or 4hrs after taking other meds, (as the Questran can affect the absorption of other medications ). I did have a lot of diarrhoea when first took Questran but when changed to the light formula this subsided and did really help dampen the itch and happy to say it still works well to help the itch have currrently.

Keep doing what your doing Peridot and hope if anyone else takes time to read this will just take that piece of advise, keep a diary of how you are daily and specially what you eat and drink i.e. the names of foods you have eaten ( eg Weetabix,tomato soup, steak/chicken, jaffa cakes (naughty but nice!) etc, how much tea or coffee you have had,how much water you have drank that kind of thing and then what symptoms if any you have had that day. I totally intend doing this from now on that way get a good idwa of what helps and what hinders how I feel. Just couple of mins before bedtime should do it. Bfn and thanks again Peridot.

[PamRopp]

I guess I must have missed something. Why are you off your URSO ? Luckily I have had no problems with URSO. It's the only thing that brought my ALK back into normal range.

[littlemo in reply to PamRopp]

Hi Pam if you click on my icon take a look at my previous blogs (think its the second one I wrote) have a read will explain why I went off Urso. I will warn you in advance though its a long one too so make sure you have the time and are not too tired if your going to read it!