PBC & Scleroderma : I’ve been diagnosed with... - PBC Foundation

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PBC & Scleroderma

Arlie profile image
26 Replies

I’ve been diagnosed with PBC about 28 yrs ago , I’m now 70 , been on urso from day one 2 cap / 250 mg and now I’m on 3 caps . I was diagnosed about a year ago with scleroderma, has anyone been diagnosed with this , I’ve also had psoriasis for many years , I’m not on any Med for the scleroderma but I do take A pill called Otezla .

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Arlie profile image
Arlie
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26 Replies
gwillistexas profile image
gwillistexas

G’morning. I haven’t officially been diagnosed with schleroderma but my labs a year ago indicated slight possibility. Is yours limited to the skin?

Arlie profile image
Arlie in reply to gwillistexas

Hi qwillistexas , yes , but not much going on with my skin, what part of Texas are you from , my sister lives in Mineola

gwillistexas profile image
gwillistexas in reply to Arlie

Hi! That’s good to hear. Oh what a small world. I live in Tyler. Where are you?

Arlie profile image
Arlie in reply to gwillistexas

I’m in N.J. , right now she’s in Tyler for therapy for walking, but she’d been living at Autuum Winds she was in the hospital in Tyler for her breathing and falling .

gwillistexas profile image
gwillistexas in reply to Arlie

Sorry to hear that. Is she doing ok now?

Arlie profile image
Arlie in reply to gwillistexas

She’s doing the best she can , I’m way overdue for a trip out there, I’ll let you know , thank you for your concern

gwillistexas profile image
gwillistexas in reply to Arlie

I just looked up autumn winds. Long term & hospice? I hope she’s just there for long term care & not the other.

Arlie profile image
Arlie in reply to gwillistexas

It’s the Assisted living

gwillistexas profile image
gwillistexas in reply to Arlie

Good. Hope she does well in her therapy. 😊

Arlie profile image
Arlie in reply to gwillistexas

Thank you 😊

SHE306PE profile image
SHE306PE

Hi I am 63 and have both scleroderma and PCB I was diagnosed about 8 years ago it hasn’t affected me that much . I was on methotrexate but stopped that because my daughter in law is a RN and advised me not to take it. Actually when first diagnosed I was on a lot of meds. I quit taking most of them and feel much better. I still take my urso because that I didn’t do well without. I think when we are told we have a chronic illness it takes a while to settle our mind into it. Since I realized I was going to live and quit thinking of the negatives I’m doing very well. I also have rauynolds and fibermyalgia . I have also returned to work 18 hours a week . So hang in there !

Arlie profile image
Arlie in reply to SHE306PE

Which scleroderma do you have

SHE306PE profile image
SHE306PE in reply to Arlie

I have limited or what is also called crest.

Arlie profile image
Arlie in reply to SHE306PE

I have that one also, I also have psoriasis,

DRK1960 profile image
DRK1960 in reply to SHE306PE

I love your sentence “Since I realized I was going to live and quit thinking of the negatives I’m doing very well”. That’s just what I needed to read/hear. Thank you. 💕

Jlruggie profile image
Jlruggie

Arlie

Hi! I have vaginal lichen sclerosis. I think it’s linked to psoriasis because I use a topical every 3 days that indicates for psoriasis. I can’t read the label or I’d tell you what it is called, it’s a clear salve in a tube.

Jlruggie

Biddyb profile image
Biddyb in reply to Jlruggie

I use Dermovate ointment for me it works well. At the moment it flares up every 10 days or so. I have tried not to use the product as it contains a steroid but as its only sparsely applied I find it works straight away so use it for about 3 days and then leave it till the next flare up. Hope this helps by the way a tube lasts for over a year

PBC2002 profile image
PBC2002

Hi Arlie, i also live in NJ. Somerset County. Where are you located?

Arlie profile image
Arlie in reply to PBC2002

I live towards the shore , Toms River, my live specialist is in Monmouth hosp , and also In NYC , she specializes in PBC

ninjagirlwebb profile image
ninjagirlwebb in reply to Arlie

Mount Sinai?

Arlie profile image
Arlie in reply to ninjagirlwebb

Yes

PBC2002 profile image
PBC2002 in reply to Arlie

CAn i ask which doc? I used to go to my Sinai for all me medical care and my OBGYN care.

Arlie profile image
Arlie in reply to PBC2002

Dr Nancy Bach she’s fantastic , who do you go to now , look her up she has other ofc’s , where about are you

Ellyne profile image
Ellyne in reply to Arlie

My hematologist is in MT Sinai as well. Dr. Nancy Bach?

Arlie profile image
Arlie in reply to Ellyne

Great I go to see her in Monmouth County medical center

HealthyChik profile image
HealthyChik

Sorry for the late post but Im new to this forum. Since being recently diagnosed and knowing that people with PBC can also have underlying autoimmune diseases, I immediately went to a Rhumatologist. He did a series of bloodwork to rule out things. I tested positive for a few antibodies but nothing to really seal a diagnosis, then he later mentioned that I likely have limited sine scleroderma. I'm not confident in his diagnosis but nevertheless he didn't prescribe any meds and took a wait and see approach, so that's what I'm doing. I do have Raynaud's

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