Experiences with

Systemic sclerosis

Hi - my mum is taking mycophenolate for systemic sclerosis and pulmonary fibrosis. She has been taking a small dose for about 3 months. She has caught some bug which has gone onto her chest and she has a really bad throat can barely talk.

Hi, I have been diagnosed with systemic sclerosis/myositis, I lost 20kg, and I eat a lot but have no weight gain, if I eat fats I have big problems with reflux. Is anyone here experiencing the same problem? Thank you

I received a very high positive (+++) SCL70 which stated scleroderma/systemic sclerosis. GP has referred me to rheumatology which I will likely be waiting atleast 8 weeks for (urgent referal 🫣).

I am considered an anaesthetic risk due tomy autoimmune disease ( systemic sclerosis) and heart failure. I am awaiting a decision ( for last 4 months) I am not sure what to do now as it impacting on my life so much, I am unable to walk very far so unable to go out. Any advice would be welcome.

https://www.rarediseaseadvisor.com/disease-info-pages/systemic-sclerosis-guidelines/

Hi, I rarely meet anyone with SSc and just wondered how many people are actually living with this horrible disease in my area and what specialists they see/ have experience with 😊

Blood test done at the appointment showed Systemic Sclerosis (anti TH/TO) as well. I was advised of this diagnosis over the phone at the beginning of June. My face to face appointment is 9th August.

Diagnosed with diffuse cutaneous systemic sclerosis - thankfully no fibrosis. I don't have any skin tightening yet, thankfully as on mycophenolate 2g and that has reversed the skin involvement I had on my hands.

I have read up, but it seems there isn’t much information whether it is connected to Systemic sclerosis.

Hi, Been diagnosed with ltd systemic sclerosis and fibromyalgia Jun 23, has had Raynaud's for a good 10+ years. I'm currently looking at getting life insurance and have not been prepared for the difficulty! (Previous policy was done a long time ago prior to the change in my health.)

This includes (but is not limited to) diseases such as: Rheumatoid Arthritis (RA) and other inflammatory arthritis, lupus (SLE), Sjögrens, undifferentiated (UCTD) or mixed (MCTD) connective disease, systemic sclerosis, PMR, Inflammatory muscle diseases, vasculitis, Multiple sclerosis (MS), Autoimmune

This includes (but is not limited to) diseases such as: Rheumatoid Arthritis (RA) and other inflammatory arthritis, lupus (SLE), Sjögrens, undifferentiated (UCTD) or mixed (MCTD) connective disease, systemic sclerosis, PMR, Inflammatory muscle diseases, vasculitis, Multiple sclerosis (MS), Autoimmune

Hi, I was diagnosed with SSC last year - typical symptoms. Recently my scaclp has been driving me mad with an ever increasing itchy patch. Can anyone recommend a soothing shampoo?

They have also put RA on my notes is this normal for systemic sclerosis to cause RA on top of everything else I feel like a walking dictionary for autoimmune conditions 🤣 I think I’m up to six now ? I’m guessing they all fit into the one main diagnosis ?

Is this connected to my Systemic Sclerosis or just a coincident. Thanks for any thoughts on this.

Hi Everyone, I’ve recently been diagnosed with Diffuse Systemic Sclerosis at 35, after about 9 months of experiencing various symptoms.

Hi I was diagnosed with systemic sclerosis in Jan this year. I am concerned about the effect my job has on my condition and if I should be looking to change. I work outdoors 5 days a week all year round.

I was diagnosed in September 2023. I’m currently on prednisolone and hydroxycholoquine. I’ve struggled with fatigue for close to 2 years now and it has been the most debilitating symptom so far. In the past few weeks my hands have become very achey, they were slightly achey before but now it’s a lot

I have been speaking with the sister of a friend recently, who is battling various autoimmune diseases for 16 years now (hashimoto, RA and recently also diagnosed with systemic sclerosis and polymyositis), who has told me about this.

Hi, I’ve posted on here a few times about large areas of calcinosis ( I have diffuse systemic sclerosis) but as it’s a rare side of dSSc I have had very little response regarding others having this .