Scleroderma (Systemic Sclerosis): Anyone else?

@kimberlyfarasyn Welcome to Mayo Clinic Connect. This is a great group of people and I’m sure that they will help you! But first, can you tell us about the multiple issues you are dealing with? How long have you had Sclerosis/systemic sclerosis? Are you receiving treatment ?

I was Diagnosed back in February with scleroderma, Sjogrens and ILD. Positive ANA positive Scl 70
They started me on Prednisone, Cellcept and Retuxamab infusion. It was May I did first round of infusion. My CT last week showed mild progression. I don’t know what to think. Should I be seeing something different on the scans.

I was diagnosed with Systemic Sclerosis in June of 2023. At the time I lived in TN and the rheumatologist I was referred to wasn’t very knowledgeable in treating my condition. They found that I had esophageal dysfunction and pulmonary fibrosis as well as microstomia and other facial changes. In March of this year I moved to Ga. Since then my condition has worsened. My ILD has progressed, I have severe GI problems now and I’ve lost the padding in the bottom of my feet. Walking is almost impossible. I no longer recognize myself due to the facial changes.

Hi Robin, I’m Kim. I was diagnosed with SSc in June of 23 and also have ILD. Unfortunately the rheumy I was seeing wasn’t very knowledgeable and I didn’t receive the appropriate treatment for over a year. I’ve been on methotrexate since diagnosis and started Cellcept 3 months ago. I’m also continuing to progress. I’m actually still trying to get to a dr that really knows how to treat me. I was finally referred to Mayo Clinic last week.

I’m sorry you are going through this.
I hope you get better results at the Mayo. My daughter goes there for Lupus and his lot of confidence in them. I got a call from them today after filling out their request for an appointment over the weekend and I have an appointment coming up in November. I actually feel really relieved. I realize even the best doctors and treatments may not always give us the results we’re hoping for. But when you don’t feel 100% confident in your doctor it’s best to seek more advice. For all I know they wouldn’t do anything different. But even my pulmonologist said there are better options for the Rheumatology treatments.
I wish you all the best. God bless.

Kim i am glad you are considering the Mayo Clinic for evaluation and treatment. I am also very surprised and concerned that you are on Methotrexate, as that drug can cause ILD and pulmonary fibrosis as side effects. I would suggest discussing this with your current rheumatologist and consider discontinuing this drug. Perhaps an adjustment in your Cellcept or prednisone dose could be beneficial for additional immunosuppression.
It sounds like you need aggressive treatment as you are experiencing serious effects with rapid progression. I would start the Mayo referral process asap and even travel to the clinic who can get you in first. I don’t know if Mayo has a “fast track” for priority cases but one of the experts here may be able to help with that. I wish you both the best and I am glad you have a Mayo appointment set up Robin. The Mayo Clinic gets so much done with multiple specialists in a week that could take several months to achieve on a regular outpatient basis. You will see dermatology, GI, pulmonary and rheumatology usually within a week and the specialists all consult with each other as a team, which doesn’t happen on an outpatient basis in standard healthcare. Good luck and better health going forward!

Thankyou so much Robin. Wishing all the best to you and your daughter.

Thankyou so much for your reply and concern. I was actually told at the time of my diagnosis that I already have scarring and fluid in my lungs. That was back in June of last year. The rheumatologist I was seeing wasn’t very knowledgeable and me ver even ordered a ct scan or echocardiogram. I was there for 9 months. In March of this year I moved to a very small town and asked my new pcp for a referral to a new rheumatologist. I waited and asked repeatedly for several months. This is a very small drs office with one lady working up front and one nurse. When I asked the nurse once again she pulled my chart and said the referral had been done 2 months prior. The lady up front claimed she did it but obviously didn’t. They finally did the referral to a rheumatologist that didnt have experience with systemic sclerosis but still I was relieved to be getting any kind of help. An appt was scheduled in 2 and a half months. One week before my appt they called to tell me my appt was canceled because the dr was no longer with them. So then my pcp said he would refer me to Mayo. It’s been 2 weeks and no word. Once again I’m waiting on the referral. I just don’t know what to do. I desperately need help. My lungs have worsened along with severe gi problems and muscle and tissue loss I have infection in my toes and have lost the fat pads and tissue in the bottom of my feet. I’ve been on these meds for so long with no monitoring. Can you please tell me who I can reach out to at Mayo that could help me. Im so grateful that you responded. Praying I can finally get to someone who can help

So I’ve actually been with no care for over a year and a half. 9 months at the rheumatologist who diagnosed me and put me on methotrexate and Cellcept and besides a chest X-ray and endoscopy did nothing else, even though he knew the X-ray showed pulmonary fibrosis and fluid in the lungs. I moved 7 months ago and have had no care My new pcp just continued the meds and I’m still trying to get to a rheumatologist as my condition worsens

Just spoke with Mayo. They said they’re not scheduling new appointments at this time. I’m so sick and don’t know what to do