I have not posted in such a long time! I w... - PBC Foundation

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I have not posted in such a long time! I was informed I had PBC when I was 65. I have been taking Urso. now for 4 years.

2006 profile image
2006
11 Replies

I have gained about 6 pounds. I still work and feel pretty good. I get tired a little easier but that could be old age! A month ago I had a TIA ( stroke). I spent one night in the hospital and they ran so many tests! They can't find anything wrong and said resume all activities!

So life is good! I plan on working as long as I can, I would be so bored to do nothing! I know this disease could change in a moment.

I have not had the terrible itch so many get with PBC. Not Yet!

I keep you all in my prayers!

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2006 profile image
2006
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11 Replies
4pjx__ profile image
4pjx__

Thank you for giving me hope!

Ktltel profile image
Ktltel

Nice to meet you 2006,

It's great to hear positive stories about ones living with PBC and plugging away. Are you on any special diet? Do you take any supplements? How often do you have labs done and have they remained stable?

Stella ❤

DX 2016 PBC early stage

DX 2017 RA

Dx 2017 Dequervain's tendonitis

Thank you for putting up a positive post regarding your journey with pbc, it is so encouraging for everyone especially those newly diagnosed. . I hope you are staying well after your TIA, take care of yourself.

Bonnieanne54 profile image
Bonnieanne54

So happy to hear your going well. I was diagnosed at forty with stage one and with the urso have remained there for twenty three years. Lab work every three months and I only itch on my back

A lot of the side effects of Pbc were attributed to old age but I plug on

In the beginning they thought it was fibromyalgia and they ruled that out and they thought it was ra and blood work showed up negative. Then they thought I had chronic Fatigue syndrome and it was not

I'm happy I push through and very grateful. I'm in a genetic study now as there is no data in the states for whether or not it's hereditary. Anyone who wants to email me privately may do so at B40ai82@aol.com

2006 profile image
2006 in reply toBonnieanne54

That is great! I would be very interested in the results of that study! I have PBC and a dead thyroid! But it could be worse!

I live inFort Myers, Florida and we made it through the hurricanes so I feel lucky! Hope you continue to do well!

Good luck with the study!

Ruth

Mblack profile image
Mblack

I was diagnosed 3 years ago with PBC through blood test for blood clot after stubbing my toe ....I did have dreadful itch , tiredness for about 15 years prior but never diagnosed or any mention of PBC until then ...started on urso straight away ...I now have no itch , get tired not fatigued, , I retired in June aged 72 , feel good

Mblack profile image
Mblack in reply toMblack

Really came on to say i have gained weight too possibly 8 lbs since starting urso

2006 profile image
2006 in reply toMblack

That is about the same amount I have gained! I guess I could exercise more or eat less - I will have to think about it! I just don't want to gain anymore.

Take care of you!

Ruth

2006 profile image
2006 in reply toMblack

72! Good for you! I am still working at 69 and love it! I get tired but I don't blame the PBC I figure I am just getting old!

Take care of you!

Ruth

ShellsNZ profile image
ShellsNZ

So great to see positive stories - I am 40 and I was diagnosed very early in a random blood test at age 30. I have a beautiful little boy who has severe disabilities, he teaches me every day to live in the moment and not take life for granted. I can't say for sure if I have any symptoms, I get itches that come and go but I try to not pay it to much attention, I get tired, but I think that is part of caring for a 'different type of perfect child' :-) and living life to the fullest.

Thanks for sharing, go well xo

2006 profile image
2006

Wishing you the best! We just have to learn to live with what life hands us! Some times life is Amazing - and sometimes it sucks!

Love to all.

Ruth

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