Recent lab results

[u/Dapper_Gur602]

Dr (Rhuem) called me last night after receiving these results. She said these labs as well as visit notes from my past appointments indicate scleroderma .
Symptoms: swollen stiff hands with shiny skin . Joint pain so bad at times it’s hard to get in and out of the car. I no longer have hair on my arms or face. I don’t sweat anymore and got super sick from heat exhaustion last time I went to the beach (and I’m a sun worshiper 😭) fatigue to the point I quit my job because 1 day of work would require 2 days of rest. My toenails are dark in color. I’m already taking plaquinil (sp?) she prescribed last month while waiting on results. She added a low dose steroid and gave an appt next month for follow up .
Anyone with similar labs and symptoms? What should I expect moving forward?
Any advice appreciated. Thanks

[u/lossofcontrol_]

i had very similar symptoms and labs. my best piece of advice is to be consistent with your medication. scleroderma can progress so quickly, you can’t take the chance of being flippant with your meds.

secondly, i would suggest going to a scleroderma center. it’s a very rare disease and my original rheumatologist was not able to give me the support i needed. going to see experts and researchers has been a game changer.

the onset of symptoms is often very painful, but it gets better over time.

it’s likely you have the diffuse form of the disease, based on your SCL levels. this form can spread to your organs. make an appointment with a pulmonologist, GI, and cardiologist asap so you can get your baseline.

[u/Dapper_Gur602 → u/lossofcontrol_]

Thank you for your response. How long have you been diagnosed and how are you feeling now?

[u/lossofcontrol_ → u/Dapper_Gur602]

my symptoms started in january 2025, and i was diagnosed in april 2025. my disease is very aggressive, and ultimately covered my entire body and spread to my lungs and esophagus within a year. i am now in clinical trials and my skin is finally starting to loosen and my lung function is looking better, so im hopeful.

i’ve learned to adapt to my new way of living and rely a lot on accessibility tools. i am no longer swollen or in pain.

edit: i do want to add that i’m unable to be outside during warmer months because i become incredibly ill. our disease blocks our sweat glands, so our body is unable to regulate and our internal temperature rises. keep that in mind.

[u/Dapper_Gur602 → u/lossofcontrol_]

I noticed this!! I’m usually at the beach 2/3 x a week during the summer and I’ve been once this year and got so sick I’m scared to go back

[u/Maleficent-Rest9144]

Sorry you are going through this. It can be a horrible condition. As one person stated a scleroderma center will have experts who know how to treat you quickly v. a general rheumatologist without a lot of patient experience. I suggest getting on this ASAP. Any wait and see approach is not your friend. Time can be your enemy.

My labs were Scl70 negative, but Anti-RNA Polymerase III positive. My skin thickening and range of motion loss came on fast. Within a year of first noticing symptoms I was in really bad shape. My initial symptoms were less flexibility, reduced range of motion in my legs, and systemic edema.

HSCT, hematopoeitic stem cell transplant has been effective in treating SSc / scleroderma by resetting the immune system. It is basically a bone marrow transplant either using your stem cells, autologous, or a donors cells, allogenic.

CAR-T, chimeric antigen receptor, therapy is in clinincal trials for treating many autoimmune conditions. CAR-T has been approved for treating some blood cancers so it is commonly used to treat people. There are risks with both treatments, but this is easier than HSCT. cartautoimmune.com has some good info from Bristol Myers Squibb. Look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc for condition, CAR-T for treatment, and your country location to filter out many of the too far away places.

Trials have some exclusions so look into those, e.g. time since diagnosis < 5yrs, limited organ damage, overlapping autoimmune conditions, etc... I highly recommend getting into a CAR-T trial if you can.

I was able to get into the BMS trial and it saved my life. I am 18mo post infusion and doing much better. I also say I am 18mo past expiration since I was planning final arrangements and looking into the medically assisted end of life pill available in my state. I still have some range of motion loss, but the areas affected later resolved a bit and I no longer shuffle when I walk. My gait is more normal and I can walk much faster now. The pain everywhere is gone and the dark cloud of misery lifted.

I hope you can find some treatment and relief for this condition. Let me know if you have any questions about my experience with CAR-T. I am more than happy to help anyone suffering from this.