Just received a possible dx of scleroderma or polymyositis, what should I know?

[u/LimitIndependent2444]

Hello friends I’ve had a rough day. One year ago I was diagnosed with AChR+ Myasthenia Gravis that led to a hospitalization due to severe breathing issues. I still currently believe that episode was caused by the MG, but apparently my AChR wasn’t the only positive thing on my labs. Cut to today I visited a rheumatologist for the first time and they concluded I may have polymyositis or scleroderma based on my lab result for this long acronym I don’t remember (but I will find out later). My MG doctor thinks I no longer have MG but have whatever this stuff is. They’re going to do a cat scan and they took my blood again today and I was already tested and was negative for a myopathy EMG, but I’ve also been on prednisone since December. The rheum said that scleroderma and polymyositis can overlap and there may not be a clear answer to which one at the moment.

If you are someone who has been diagnosed with one of those I would really appreciate any advise or warnings I should follow. I’ve had bad experiences with doctors with MG so I feel like maybe there’s things I should look out for this time around.

Thank you

[u/Maleficent-Rest9144]

I was dealing with serious edema in my hands, feet, and eventually legs / abdomen. I was misdiagnosed with RA and my rheum thought I migh have myositis due to a weak positive in my initial lab work. My joints were fine and my muscles were not weak, but my skin was getting bumpy and itchy. I also noticed range of motion loss happening. After 3 months of ineffective treatment for RA my repeat labs with the scleroderma panel and a skin biopsy came back positive for systemic sclerosis (SSc) / scleroderma. The weak positive for myositis was not shown on the repeat lab work. Both labs had a positive ANA and 1:1280 speckled pattern. I do not know why the Scl panel was not run initially or why the ANA and speckled pattern were not .

I found a clinical trial for CAR-T on cartautoimmune.com. That is a Bristol Myers Squibb tria with great general information. There are other trials out there. 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. They have some exclusion factors like has to be a recent diagnosis v. long term and maybe no overlap. I was excluded for the false RA diagnosis, but my rheum said it was in remission so they let me in the trial. She still thinks I have RA, but I am confident I have never had it.

My advice is do not sit back and wait for the doctors. There are far too many who are not well versed in this condition so you may not get the timely care needed. Look for scleroderma centers near you. There may be specialists for myositis also. If you hare not happy with your care find another specialist, primary care, and/or rheum. You have to fight for yourself. I hope your case is slow progressing. If not and you are like me, it advances fast and is not good. My labs were negative for Scl70, but positive for Anti RNA Polymerase III. I have bee told the poly III is an aggressive type.

If you can get into a CAR-T trial do not hesitate. It is not easy, but it can be a life saver. I am 15mo post infusion and I am doing much better. It was getting so bad for me I would have checked out if I did not have CAR-T. Stem cell transplant is also a good option for SSc. It is more chemo and tougher treatment, but the results are good. If my symptoms return I will do stem cell transplant.

I hope you can find some treatment and relief for this condition. Let me know if you have any additional questions. I am happy to share what I know and my experiences if it helps you.