Alternative approach to PBC

[M_rose]

Hi all I've been diagnosed with PBC and have been taKing 1000th Ursodeoxycholic per day. Dry mouth in particular driving me crazy. Just wondering if anyone has ever tried alternative approach to dealing with this condition and in particular if anyone knows anything about fumitory. Could it be used as alternative to Urso and not cause all the dryness?

Love to hear from people that have any experience of trying it.

[June9961]

Hi, urso or ocilavia (oops spelling) are the nly two drugs at present to slow down PBC. urso is made up of synthetic bear bile and I'm not sure what is in the other. If you have a dry mouth it may not be the urso but another auto immune condition like Sjorgens. We PBC,rs tend to have more than one auto immune disease at a time. It's best to take advice from your consultant regarding alternative medicines. I was told to stay away from them as they can affect the way the urso performs and I certainly would not stop using urso. 😀

[AngelaBarron]

Hi, I think June 9961 has pretty much said it. all. One suggestion for you, after you have consulted your doctor about the dry mouth, could be a spray or pastilles from your pharmacist to help stimulate saliva. My Mum as prescribed them for years for dry mouth and they did help. Touch wood I've not needed them myself- yet!

[LorraineLouise in reply to AngelaBarron]

Hi Angela

I too was prescribed Urso 1000 mg per day just over a year ago.

I had dry mouth, dry eyes, flu like symptoms, including headaches and nausea, the worst.

All these symptoms lasted about 3 to 6 months and then subsided.

It takes quite sometime for our systems to adjust. Others have no problems from the Urso.

So be have patience this will get better.

Wishing you the best!!!

Lorraine

[AngelaBarron in reply to LorraineLouise]

Thanks Lorraine! I don't actually have the problem, urso works for me right now, it was M-rose who had the problem, but you are spot on with your advice. 😃

[LorraineLouise in reply to AngelaBarron]

Sorry Angela. I am glad your doing ok.

[Hidden]

I have the dryness but doctors tell me it's not primary sjogrens, I always understood it to be a symptom of PBC not the URSO as the dryness started 3 years after diagnosis and I'd been taking it for all that time.

I find it worse at night through mouth breathing ( sinus problems a separate issue) I find the biotene mouth gel the best thing for at night, during the day I have salavix pastelles on prescription and drink plenty.

I don't know anything about alternative medicine but would urge everyone to check with your doctors before doing anything the risk could be high.

[M_rose]

Thanks everyone for all the comments. I agree that alternatives should only be tried conservatively. My dryness is only getting worse and no signs of abating. Also the Liver Clinic are only concerned with the blood readings. Any ancillary issues are treated as just that - not really relevant. So basically what I'm saying is that they're not listening to me. It doesn't exactly inspire me with confidence in them!

I'm particularly interested in Fumitory which is a wild flower in this country and has been used in herbal medicine for a very long time. I'll explore it and if I have anything interesting to share I'll put it up in the forum.

On a final point I think the forum is really great. It creates a community of us where we can share what we know and don't know. I do know that there are meetings from time to time in Dublin. If anyone knows when the next meeting is I'd love to know.

Best wishes to everyone and on we go!