living with PBC

[manstin]

Hi everyone its Mandy from Canada I was diagnosed 2 months ago and its been WHAT totally didnt see this at all i thought arthritis or something. The medication and low salt diet has gotten rid of the itch and is bringing alot of blood work back into normal range.White blood count down thats good just working on Vit D it was real low. Feeling better but still wondering what the future holds.

[Brummi]

Hi, There will be a few life style changes but nothing major. Mine is now just being more watchful on what I eat. I hope you sort things out..

[Hidden]

Hello manstin.

Good to know that since you started on urso you have managed to be rid of the itch that we can get with having PBC.

For me it hasn't been a resolution to the itch but it has altered it somewhat since I started on urso at diagnosis December 2010. Urso it is said isn't something that can resolve the itch but for some lucky few it seems that it can do so. I actually found in the first few months of taking the urso the itch felt even worse than it already was.

I've always had a diet that has been low in salt, never added salt to cooking at all nor ate much in the way of fast or prepared foods.

I did have 'on the line' reading for Vitamin D in the early days. The consultant didn't recommend supplements at the time probably due to it being winter here in the UK at the time of checking. I have been utilising the sun ever since and did have a normal reading when it was last checked.

I think when we are first diagnosed with PBC it can take its toll as you are right we don't know what the future hold but then looking at it another way, even if we didn't have PBC we never know what is round the corner as the saying goes.

Once you reach the first year of being diagnosed (I am 6 this year and now 52) and all being well with the bloodwork you start to feel a bit different. I long since read about PBC but then resolved with myself that I cannot do anything about it except to keep myself healthy (I did look after myself pre-itch early 2010, reason I went to a doctor) and try to live life as full as possible. For me so far so good. My bloods are not normal but they're not overly-abnormal (or overly-elevated as the other terminology is) but they did start to come down on taking the urso. I know if I didn't have the itch I'd not know I had PBC. I have had to accept there are a few things I doubt I'll do again (going to cinema for eg due to feeling prickly if I sit about) but they are insignificant.

Hope you continue to improve on the urso, knowing you seem to be doing well makes all the difference.

[LindaVillanova]

Hi Mandy from Canada, I'm Linda from north of Toronto- diagnosed a year ago, started on urso and Vit d right away.

I never had the itch, was just not well and too tired with shingles and chest infections last winter. Much better this year although a couple of blood levels still high, but not unusually. If I eat well, drink more water and scale back the treats (miss my wine, chocolate) I don't feel any different. If I cheat or push myself I can tell the difference as fatigue comes back. Nothing else has changed for me and am not planning on deviating from that!

PS There's a PBC workshop in Toronto tomorrow - if you're nearby let me know and I can pass the details. Will meet others, learn more and hopefully have questions answered as Doc really provides little info.

Take care!

Linda

[manstin in reply to LindaVillanova]

Thank you Linda I was born and raised in Barrie Ont but am way out in Kelowna BC now. Would have loved to attend workshop have nothing here. My family doctor is great but not much help really.The Gastroeneroligist that diagnosed me handed me prescription and out the door I went in say half an hour feeling omg thats it am dead. But have googled PBC every night for 2 weeks now maybe once a week I have hope now but scary for sure. I just stumbled across this website. So nice to hear from others so thank you thank you.

[PBCsupport in reply to manstin]

Hi Mandy, we have a PBC group in BC. As well as the Toronto & Edmonton workshops - we held one in North Vancouver where people attended from all over the province - I think the furthest was Lac La Jeune. Robert Mitchell Thain from PBC Foundation lead the Self Management workshop. If you would like more information on our group let me know. [e-mail]

[Becca75]

glad those things worked for you with the itch - for the medication are you talking about URSO or are you on specific med for the itch? I now have what seems like arthritis but I'm wondering if it's simply part of PBC. It's in my fingers, hands, wrists, feet and even toes.

I've been on URSO since diagnosed April 20th, and the itching is crazy at times. I've been taking reactine which sometimes helps a bit for sure. I don't eat a lot of salt - but does salt make the itching worse??

(I'm in Canada too)

[manstin in reply to Becca75]

Im just taking URSO and watching my salt like crazy but its in every thing yes for me more salt I itch. I was itchy for a year scratched so bad I bleed and am scared now. But I have been itch free for about 1 month. Im still dealing with burning in feet and hands and ache in hands and feet as well. But its getting better longer am on URSO. I have read stuff from other people most have arthritis like stuff to. Im still trying to figure it all out to. lol work in progress

[Djscallan]

Hi Mandy, much like you I was misdiagnosed several time was arthritis and other things for a very long time. Fortunately I get my blood work ever 6 months and went my blood work was elevated they really got on the ball. I was having severe burning whenever I ate because of the obstructive bile flow. They kept treating me for an over acid problem. I took the medicine a week Urisodial and the burning stop immediately. Now my food is at least digesting so my chronic fatigue is much better. I was a really healthy eater before so I don't know if the sodium was any different. The biggest thing I noticed is if I don't sleep enough I have really bad joint pain and muscle cramps. Otherwise I feel pretty well. Much better than before the medication. My doctors feel like as well as I am responded good chance my life expectancy will be the same as the general population. Good luck to you I hope this makes you feel hopeful.

[manstin in reply to Djscallan]

Thank you yes its nice to not be the only one with PBC. But my specialist told me all the symptoms you mentioned were not related to PBC as I have all that going on to. I have read others have severe burning and joint pain along with muscle cramps to. Perhaps I should talk with my family doctor as I dont sleep either totally insomnia. Interesting

[Djscallan in reply to manstin]

I also have insomnia severe. I actually have to take medication to sleep. Sometimes it doesn't hold more than 4 hours. I have been confirmed by 2 specialist. My regular MD didn't have idea of this until my blood work was so different. My GI passed it off as well I think I just didn't fit into a classic box. I now go to a teaching hospital and have several DR's for every area of the disease. Yes, I agree it's quite interesting. I would love not to have PBC. However I have such an overwhelming response to the meds I guess there is not much doubt. Please let me know about your 2nd opinion. Praying you get a better answer.

[kandiepat in reply to manstin]

Hi Manstin, I am similar to you - I also have Sjogrens syndrome and PBC sometimes the symptoms overlap and I dont know which is causing what. At the moment my fingers, arms and hands ache like mad - I think that comes from Sjogrens but Ive heard that PBC ers have the same problem. Kandiepat

[PBCRobert Partner]

Hi,

I am writing this from Vancouver having spent the last 4 days in Canada doing some of our self-management workshops for people in Canada with PBC.

I hope you take the time to join the Foundation proper pbcfoundation.org.uk and also Canadian PBC society. We both have people in Canada that would be delighted to chat, support etc.

All the very best,

Robert.

[Syb_Sze in reply to PBCRobert]

Hi. Robert. I had lived overseas for years and planning to move back to Vancouver in 2-3 years. I found out I had PBC in 2013 and I would like to know the estimated cost of URSO . I weighs 150 pounds, I hope you could share your cost of URSO or give me a price range reference . Thank you.

[PBCRobert Partner in reply to Syb_Sze]

Syb, we are a patient support and advocacy charity. We do not sell Urso.

In Scotland and Wales it is free. In England there is a nominal fee for each prescription. In the US, it can be ridiculously expensive. I do not know what it costs in Canada.

[Katienharley in reply to Syb_Sze]

Hello! I can give you a little idea of how much Urso costs. I’m just outside Calgary, Alberta, am 120lbs but have been prescribed 1000mg of Urso a day as I wasn’t responding well to the recommended dosage per weight. I’ve been on it now just over a year and the price fluctuates each time but the last prescription fill was $135 for three months. Keeping in mind of course the pharmacy dispensing costs - that may vary. Hope that helps a little.

[Syb_Sze in reply to Katienharley]

Thank you for replying me on the reference of cost of Urso. Wish you well !

[DoreenD]

There is a support group in Canada Canadian PBC Support group is pbc-society.ca/welcome.html

[Debbiem40]

Hi Mandy

I was diagnosed 13 years ago and honestly? nothing really has changed! My life is as its always been, I take 3 URSO tablets a day and have a check up every 6 months or so.

I just try to forget I have it and stopped looking at blood work results etc., you just have to live your life!

[Pamela4475]

My vit D3 by prescription helped my bone pain now I’m on over the counter but d.... takes a bit but it helped my pain