PBC & Scleroderma

[Arlie]

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 .

[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 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 in reply to Arlie]

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

[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 in reply to Arlie]

Sorry to hear that. Is she doing ok now?

[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 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 in reply to gwillistexas]

It’s the Assisted living

[gwillistexas in reply to Arlie]

Good. Hope she does well in her therapy. 😊

[Arlie in reply to gwillistexas]

Thank you 😊

[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 in reply to SHE306PE]

Which scleroderma do you have

[SHE306PE in reply to Arlie]

I have limited or what is also called crest.

[Arlie in reply to SHE306PE]

I have that one also, I also have psoriasis,

[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]

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 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]

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

[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 in reply to Arlie]

Mount Sinai?

[Arlie in reply to ninjagirlwebb]

Yes

[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 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 in reply to Arlie]

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

[Arlie in reply to Ellyne]

Great I go to see her in Monmouth County medical center

[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