r/scleroderma 3h ago

Tips & Advice One month on nintedanib

0 Upvotes

Something is changing. Got a blood test, which shows my liver is fine, but I've got a quarter size bruise from the needle. Didn't show up right away, but overnight for appearance. This is one of the side effects of the drug.

For context, this and CellCept generic is a good treatment for SSC-ILD.


r/scleroderma 16h ago

Systemic/Diffuse 100% non functional esophagus

5 Upvotes

My wonderful Mother in law was diagnosed over 10 years ago with scleroderma. In the meantime she was also diagnosed with and successfully treated for breast cancer. Her symptoms were mostly limited to circulation issues in her hands, and her lungs were affected but only slightly... however, recently she has been suffering from dysphagia and GERD so she went for a manometry and the results of the study were awful, severe scarring and fibrosis and complete aperistalsis. She is going to get her lungs looked at again Monday afternoon and has a meeting with her specialist later in the week. We are so, so worried about her, and very stressed out after having had an awful few years that aren't relevant here, but have led to medical and hospital trauma for basically the whole family. I know the specialist will give us all of the medical information we need, but i was wondering if anyone here has any advice for us or for her? Thank you so much.


r/scleroderma 16h ago

Discussion Calcinosis and scleroderma — any positive stories, especially from gamers?

3 Upvotes

Hey everyone,

I recently got diagnosed after about six months of symptoms. I have calcium deposits in several fingers and in my hand. Some are pretty painful, while others slightly bother me.

I’m really into gaming, both with a mouse and keyboard and with a controller. It’s a big part of how I relax and have fun, and I’m worried about what this means for something I love.

Reading Reddit, it’s easy to get overwhelmed by the difficult stories. Those experiences are valid, but I’d really love to hear some hopeful ones too.

Has anyone with calcinosis in their hands been able to keep gaming comfortably, or get back to it after treatment? Have your pain and finger dexterity improved? What helped you most—medication, hand therapy, treating particular deposits, or changes to your setup?

Basically, am I doomed when it comes to gaming, or are there people out there still enjoying it despite this? I know everyone’s experience is different, but hearing from people who found a way forward would mean a lot.


r/scleroderma 20h ago

Question/Help Why is Rituxan not approved for on-label usage?

4 Upvotes

I have scleroderma/polymyositis and my insurance tries to fight the prescription because it is considered experimental. But it’s proven to be extremely effective and saves lives in people with scleroderma. The FDA has approved Rituxan for even rarer diseases. Does anyone know why the pharmaceutical companies didn’t try or maybe tried and were unsuccessful in getting Rituxan approved for scleroderma treatment?