And another

[Mrsfancypants]

I stared taking ursofalk ( liquid ) on the 1 st Feb 2017 but after a week I started developing headaches daily, and two weeks on it was unbearable, so I have stopped ( now 5 days) I have another batch of ursofalk I haven't stared yet ( tablets ). I'll start again tonight, has anyone else experienced horrendous headaches ?

[Hidden]

Hello WendyHelena.

As far as I know from various Patient Info Leaflets (PIL) I have looked at since being diagnosed with PBC December 2010 (I have had 3 different pharmaceuticals who produce urso so far), headaches don't seem to be one of them.

I know in the early days I experienced what could probably be described as normal - constipation (never had any problem pre-urso), bit of tummy bloating and I thought the itch was worse plus I had heartburn.

[Thenoise]

I had the most horrendous migraine 2 weeks after starting Urso. Not sure whether it was the meds that cause it or not, but never experienced anything like it. I've had migraines in the past but nothing like that. It lasted for a few days. Xx

[LindyRich]

Hello Wendy

Have you joined the PBC Foundation?

All this is quite scary at first. PBC is rare so most people are shocked to find out they have it. I know i was.

The foundation has a compendium you can download. It is very helpful. Clear, understandable and up to date information.

Google is not a good place to find information as it can be wrong or out of date so try and resist going there.

[butterflyEi]

Hi Mrsfancypants

I think you will find that when you first start URSO tablets that you spread the dose across the day. If you have read the leaflet you will also see that your dose should reflect your weight. I used to suffer with bloating and upset tummy. It may be that you need to slowly introduce the URSO into your system. I have read, but you should check with your doctor, that for some the medication is introduced slowly over a period of time until the body accepts the dose. However you should also bear in mind that when we become ill it is not necessarily the PBC but an unfortunate coincidence. Hope this is of some help but please do check with your doctor, although here in the UK I do appreciate it is not always easy. You can always telephone the secretary to the specialist and ask the question via her. I had a problem and did this and received a reply in the same week. I would not have thought to do this but Brummi answered a post that I had put up and he apparently has also done this.

Hope this helps

best wishes

[Hidden]

I would echo LindyRich, if you've not joined the PBC foundation, join them its free and you will get all the right information. Also give the helpline advisors a call they are a wealth of knowledge you will feel so much better for doing so.

The headaches may be stress related it's a lot to take in when your first diagnosed with your emotions on a rollercoaster. I found having to take regular medication really hard to deal with initially.

I also personally found making sure I took the urso with food the best way for me, I had some indigestion, issues so built up to the correct dose slowly.

[Hidden]

I'm so sorry to hear that! I haven't experienced any headaches with the urso meds. My Alkaline Phosphatase isn't coming down after 2 1/2 yrs of this med so my doc is going to start me on the new obetecholic acid med which targets people like me who's liver enzymes are decreasing as should with just urso but not bringing down the alk phos. Good luck to you with the tablets.