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
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.
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. 😊
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
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?
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)
Oh you are far away. Ok. Sounds good 👍😊
Hi Gwillis, here a follow up ; I saw my pulmonologist and he told me that he will do follow ups more often and made a request to make me have a pulmonary function tests done before I am seen by the rheumatologist. He said that the neurologist made a request to have me see the rheumatologist at the interior of 3 months.Now this morning I met with a surgeon for my anal problems. She said that the patches of white seen at begining of the interior side of the anal canal is my lichen sclerosus and that the other white patche seen a little bit further in is the overproduction of collagen trying to repair the anal fissure. That if the anal fissure keeps comming back it is because I am straining too hard to have my bowel movement done and that it is probably my pelvic muscles that are affected by the scleroderma. She is going to have me have a test to see my pelvic muscle strength and meet à dermatologist also. But she doses not recommand an operation because of the scleroderma. I should have a better over all picture once I meet with the rheumatologist.
So much fun to comme 🙄 😫 ☹ !
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😱
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
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
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
Hi, I have had PBC for 13yrs, however in the past 14 months I have been diagnosed with pulmonary fibrosis and scleroderma, and just this past month waiting for test to check if I have PH,
I do feel more tired and have had noticed my fingers turn blue with the cold, and achy joints, I am so shocked how things have changed in my life, but I walk every day trying to and eat healthy , and of course stay positive,
It’s tough I know and I understand !
Thank you Susan, and yes presently finding it hard to accepte. I'm trying hard.
It’s fine to be upset and frustrated, just give yourself time, life can be cruel sometimes, but in time you will find yourself excepting and moving on with life , you will be fine I promise, just allow yourself to feel as upset annoyed, you will get past it and all will be good 💚☘️
Thank you so much for these kind words. It helps To ease the frustration xxx
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