Experiences with

Systemic sclerosis

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.

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.

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 😊

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.)

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?

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

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

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.

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

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 .

spent the day at the Sheffield hospital yesterday having a heart catheterisation and when all results were in the consultant said I have developed pulmonary hypertension on top of my Scleroderma. Don’t know how I feel about this yet.

Hi, I have severe osteoporosis as well as diffuse systemic sclerosis. I am having 6 monthly injections of denosumab. I also have chronic ulcers on feet which are being looked after by tissue viability. I have just finished a 2 week course of a strong topical steroid cream with this week off.

I have positive ANA Centromere ,but that also doesn’t mean a definite diagnosis for Systemic Sclerosis ,they advised that can sometimes be caused by the Raynauds?.

I would be interested to know the experience of others with systemic sclerosis who have had to have surgery of any kind. Thank you.

.🥱 I have a couple of autoimmune disorders (autoimmune thyroiditis and mild systemic sclerosis for which l take Levo and Hydroxychloroquine). I had wondered about pernicious anemia but my b12 is always in the 570/680 sort of range.