PBC and Scleroderma

[Ancolie]

Hello everybody,I have learned this week that I have tested positive to Scleroderma. The neuroligist is refering me to a rheumatologist. I am anguished because I have had lung problems since a few years and anal problems also. Do some of you have to deal with both and if so how are things going ?

Thank you for your support !

Ancolie

[DonnaBoll Administrator]

I'm sure you will get several responses from members here who have this autoimmune disease as well. I would strongly encourage you to get all the information and support you can from their foundation. National Schleroderma Foundation...... I think they have a conference coming up this summer. worldsclerofound.org/ There is a world organization as well.

[Ancolie in reply to DonnaBoll]

Thank you for the link Donna and information ! Take care 🥰

[gwillistexas]

I have limited schleroderma. My rheumatologist will periodically order a scan of the lungs and heart to be sure there are no issues. Scleroderma can cause hardening. Hope you do well. Your rheumatologist will take care of you. 😊

[Ancolie in reply to gwillistexas]

Thank you Gwillis, it gives me some hints on what types of follow ups should be done. I am seeing my pulmonologist wednesday the 26th of March and will talk things over with him.Thank you again,

Ancolie

[gwillistexas in reply to Ancolie]

You’re welcome. I know it’s hard but try not worry. (That comes from one of the biggest worriers in the world, lol!) my drs say not to worry unless they give me something to worry about. But I still worry. Please let us know how you do. When do you see the rheumatologist?

[Ancolie in reply to gwillistexas]

I have to wait for the call from the hospital so I dont know for now. I live in Montréal Canada. As soon as I get my appointement I will let you know. Thanks Gwillis,

Ancolie (Gisele)

[gwillistexas in reply to Ancolie]

Oh you are far away. Ok. Sounds good 👍😊

[DebatDG9]

Hi I was diagnosed with localised scleroderma with overlap lupus last year 10 years after PBC. I expected Sjogren’s and got far more than I bargained for! I reported difficulty with swallowing so had endoscopy and barium swallow and had baseline lung and heart function testing. Nothing untoward reported. Now taking hydroxychloroquine which I understand may slow down any further damage. Rather unsettling to know immune system on the rampage😱

[Ancolie in reply to DebatDG9]

Thank you for your answer, very helpful to know what other people are taking to slow it down.Ancolie 🥰

[Buttsy]

Morning,

The SRUK site as all the information, to make you aware of what test are required and what course the disease can take. The symptoms people have can vary quite a lot , but there can be Lung involvement and gastrointestinal tract can be involved at any location from throat to anal.

It is good that you have been referred to the rheumatologist, they will be able to facilitate the tests and any medication you may need.

I know it’s hard not to worry, I worry a lot, but at the end of the day it dosnt help. Wait and see what the rheumatologist says , hopefully you won’t wait to long for an appointment.

Take care and good luck x

[Ancolie in reply to Buttsy]

Thank you so much Buttsy. It is very hard to swipe it from my head even if I know that I cant do nothing about it. I will visite the web site. Hope things are good for you also 🥰Ancolie

[Buttsy in reply to Ancolie]

I am okay , Thanks , just about to trial Hydroxychloroquine myself, others have mentioned they take this also.

I know it comes in waves for me the worry, my Rheumatologist is somewhat relaxed about it, which actually dosnt help, but I go with a list of questions I have and any new symptoms and we go through it.

I would add write down , your questions, symptoms and concerns so you don’t forget when you get your appointment.

Have a nice day

[Ancolie in reply to Buttsy]

Very good advice, I will do so.Thank you so much !