To urso or not??

[cazz22]

I couldn't take capsules of urso last year because it seems something probably the fillers didn't agree with me.altho the dr doesn't give me a high dose I found I did much better on tablets.then this last week I decided not to take them.i instantly feel great loads of energy tho I didn't feel that I lacked that much anyway.no aches no pains.i dunno.i guess life's about quality not quantity but I suppose il drift back on to the little blighters.to worried not to

[Hidden]

Hello cazz22.

I started on urso Dec 2010 when I was diagnosed with PBC. I started itching early 2010, that is why I saw a GP after a fortnight of it vanishing. I was fatigued at the time but didn't think much of that.

I was never one for taking any medications pre-2010 and I was not happy about urso being something that is recommended for life once starting on. I did go through periods in the early days of taking urso of a few side-effects that vanished within a few months. I did also have times when I hated the fact I was soemhow tied to taking tablets and I did myself skip them for a couple days at times when I did feel quite down. I also went through a few days over the first couple years where I felt quite tired due to not sleeping well with the itch at night and I'd stillbe in bed by noon of the odd Sunday thus not eating anything. I found those 3 seperate days that by not taking the urso and not eating for a whole the itch vanished and I didn't have it for several days. That to me didn't spell it was the urso but the fact that the itch is down to the digestive system. I reckon if I stopped eating today and didn't from then on I'd not have the itch but I doubt I'd last long without food.

I somehow think that it might be a good thing maybe to have certain short intervals of not taking the urso but as yet I've not really done it intentionally. I've not had that down time with this PBC now in about 18mths and have taken the damn pills every day. I have experimented with the timings and reckon I've found that for myself (breakfast and evening meal).

I have experienced the same side-effects since originally starting due to different brand/generics but currently on a branded one (Destolit) that I seem fine with.

According to the hospital consultant who I saw a couple mths after starting urso when I was experiencing heartburn every evening and also a bit of bloating and I started bouts of constipation I never had prior to urso, he said if I thought the urso wasn't doing any good then up to me if I wanted to quit. It's that grey area with urso due to it being a tablet taken to try to hold something back as opposed to fixing it daily.

As much as I hate the urso I continue to take it. For me I haven't had fatigue in quite some time now, that vanished sometime during 2011. I just have the itching still but have to admit it is far better than it was back in 2010.

I think with urso you need quite a bit of time actually to get the system used to taking it I feel. I personally do not think it as an instant thing. I think over time with continued improving bloods the liver is being relieved if the urso is doing any good and the system starts to gain back a more normal mode.

[Kaywal]

Hi Cazz22. I've also had problems with taking urso. I've developed something like adrenal insufficiency/fatigue and my quality of life has decreased massively since I started taking urso over 5 years ago (you're right about quality above quantity!). I've barely a social life left and I'm missing out on being a great Mum to my kids. Unfortunately docs diagnose stress after lots of routine tests came back normal. I'm not stressed tho! I don't think there's enough of us with problems taking urso to be taken seriously

[spoul]

I've taken urso from day one and my view is that the benefits weigh out the disadvantages. It is well researched and proved that urso stabilises your liver function tests. Personally I'd be really worried about not stopping them and taking things into my own hands and I don't think my consultant would be happy either!

[Rosehip19 in reply to spoul]

I agree wholeheartedly, Spoul. At a PBC Conference a couple of years ago we were given a talk by a specialist doctor who is doing research into PBC and he said that those who took Urso constantly from diagnosis were almost guaranteed to have the progression of the illness slowed down. Those who stopped taking them for some reason ran the risk of the progression accelerating. I have never missed one dose - am too scared to!

[Hidden in reply to spoul]

Well t hese are my thoughts exactly spoul. I've probably not missed more than 3 days in the 3 and 1/2 yrs I have now taken the urso.

I don't see urso as a medication, given it is a form of bile acid. I see it more as adding so a supplement myself.

Knowing how I felt back in 2010 I know I am far better than I was then so for me I'd continue taking the urso.

[Hidden]

Hi

I orginally had problems with the capsules, with an allergic reaction.

I now take 5 tablets a day and have had no problems at all, so maybe I am just lucky.

Such a shame you are having problems, it is such a good drug for PBC, especially if you have been diagnosed early with little liver damage.

Keep well

Lou

[LindaSusan]

I have yet to take any medication although I know that it is available if my symptoms ever get bad. I appear to be symptom free at the moment and I am a great believer in NOT taking anything until absolutely necessary. Don't want my old body to become dependent on something it doesn't need.

As for fatigue I have found that the more I do the better I feel. So with this in mind I've just joined a Zumba Gold class and a Fit For Life (FFL) class. I feel a definite improvement and intend to carry on.

Wish you luck with your abstinence and hope you manage without URSO for ages.

Linda Susan

[spoul in reply to LindaSusan]

I understand and that's slightly different Linda Susan. If your symptom free and the doctors don't think you need urso then that's fair enough. After all they are the experts! Take care and hope you keep well

[Hidden in reply to LindaSusan]

Hello LindaSusan.

Yes I understand that at present you aren't taking urso and I hope you never do have to start on it.

I was never one for taking any medications prior to 2010 when I started itching and was diagnosed with urso. Given how I felt at the time I decided to give them a go and see. I got good LFTs within 2mths and continued. I do loathe taking the urso but I simply just reach for them these days pretty much without thinking.

I think for me with the itching I was curious as to how it might make a difference. I still itch but it is definitely not like it was back in 2010 and part of 2011, it is much improved and for me that is another reason I shall go on taking it. I don't experience any symptons whilst taking the urso but have on the initial start or a change of brand/generic manufacturer but I suppose that can be expected with a lot of tablets. For me in the beginning it did take a few months for them to 'bed down' in my system so-to-speak.

[LindaSusan in reply to Hidden]

Sorry to sound ignorant but where exactly is the itching. Is it all over the body or just in certain areas. For instance when I am about to go down with flu or sore throat my head itches. Not excessively but it is a monitor to how I'm feeling.

[LindaSusan]

Sorry to sound ignorant but where exactly is the itching. Is it all over the body or just in certain areas. For instance when I am about to go down with flu or sore throat my head itches. Not excessively but it is a monitor to how I'm feeling.

[Hidden in reply to LindaSusan]

Itching is what I call random, starts certain places ie arms up to elbow some days. My head occasionally itches but it is minor. Scratching or rubbing doesn't seem to make too much difference in PBC.

I liken it to being stung by nettles or having a few wasps sting, that sort of feeling. At night I experience the creepy-crawly beneath the skin sensations. As soon as I rub/scratch the one place, starts elsewhere. My legs below knees and feet and toes are more prevalent at night than anywhere else.

The itch doesn't tend to subside in many with PBC once it starts. It can be a constant. I am ok from morning until early evening when I start feeling the prickles of it kicking in and then by 11p.m. at night I usually know I have the itch. Of a rare evening I sometimes am not too bad at all and am thankful.

I have never really been a sufferer of colds at all. Last time I had a realy bad sore throat where I felt I couldn't swallow and was informed by the doctor I had a bad bout of tonsillitis it was in 1999. I've not had any sore throats since this time. (He gave me antibiotics then, until Dec 2010 from 1999 I had not had any medications prescribed by my GP.)

I do think if you start with the itch you will know you have it and to me it sounds like at present you are just doing fine and your itchy head is just down to how you are feeling at that time with a minor ailment.

[Hidden]

Hi, before urso was used in treatment for pbc the prognosis was grim. If I was you I would continue to take them.

[spoul]

My itching prior to starting urso was mainly my legs. It's hard to remember now as it was 16 years ago but the urso cured it. I can only describe it as feeling like something crawling under your skin with little relief from scratching and red weals from nail damage! Lol

[Hidden in reply to spoul]

Hello spoul.

Yes you are one of the luckier ones taking urso that your itching vanished. Mine has improved since starting urso (be 4yrs come December).

It seems puzzling though how a minor few lose the itch with urso and majority it continues.

Given the itch isn't supposed to be any indicator I've accepted it. I am starting now to wonder what life was like minus the itch to be honest! Had it now for just over 4yrs.

On a brighter note though I won't hold my breath (!) last night I went to bed jsut before midnight and actually slept right through until just gone 5a.m. Now that is a first for me in about 5 months. I then went back to sleep following waking up and was just gone 7a.m. so last night I did really great sleepwise and of course due to that I missed the itch!

[spoul in reply to Hidden]

Hi peridot I don't consider myself lucky as the fatigue has changed my life......destroyed my career and my family and social life. Everything is relative and it would be unfair to say one is worse than the other but I think we've both been dealt a bad hand!

[Hidden in reply to spoul]

Oops spoul.

Sorry I had forgotten that you have mentioned prevously fatigue.

I did once think about fatigue and itching and what would be the, lets say the better of the two if you had one sympton but back in 2010 I suffered fatigue and also itching and I do know how fatigue can be at times, knocked me for six at the time as I was working full-time over the allotted hours in a day and itching at the time was creating further problems with sleep. Due to me having both the itch and fatigue, not so sure now what I'd choose.

Think they are both as bad and I really do feel for others who endure both daily unlike myself at present. Fatigue for me left me sometime during 2011. I am quite energetic and fit, just the itch that does create a few problems for me too as at certain times it causes havoc as I find I cannot sit for very long much these days unless I am doing something or I do feel the prickles.

Didn't mean to cause offence, not my intentions as I do try to come across for all of us in a more positive way.

[spoul in reply to Hidden]

That's ok no offence taken x