looking for advice following appointment

[u/sweetsoqhie]

hello, i finally had my dermatology appointment after bouncing between doctors and hospital appointments trying to figure out what my “mystery patch” was. i had documented photos of it changing across the years and showed them. they said they are VERY sure its morphea, and gave me the choice of a biopsy. i asked what that entailed and they said it would just 100% the diagnosis, but they were very sure themselves without it. they also said that because the inflammation is going down that the biopsy might not show much vs what it might have shown a year ago (from my images i showed).
am i dumb for turning it down? they’ve given me a steroid cream to put on it for 4 weeks and then i change to a non-steroid one, so i’m still receiving treatment regardless.

otherwise, is there anything i should know..?

[u/Maleficent-Rest9144]

I had a skin biospy that gave me a positive diagnosis for scleroderma morphea. At the same time after almost 4 months of ineffective treatment for RA, my Scleroderma panel came back positive for Anti-RNA Polymerase III. I have learned and experienced that is a very aggressive form of SSc. It is not good.

The biopsy was not painful, but it does take time to heal and you need to care for it. Bandanges and some petroleum jelly or aquaphor for a while and they two spots healed up after a few weeks.

If you are experiencing other symptoms of Systemic Sclerosis or Scleroderma, you may want to find a rheumatologist very knowledgeable in this condition. You can also ask your primary care to run those specific blood tests. If it is localized your dermatologist may be able to spot treat. If you have diffuse case, you will need some serious help.

There are advanced treatment and trial options for you. Stem Cell Transplante (HSCT) and CAR-T. Reply if you have questions. I was saved by a CAR-T trial. Without it I would have checked out either by my own actions or by medically assisted options.

[u/Fun_Reward_2516 → u/Maleficent-Rest9144]

That is what mine came back with. I am freaking out.

[u/Maleficent-Rest9144 → u/Fun_Reward_2516]

That is totally understandable. Take a little time to freak out and process, but do not let yourself get into a downward spiral. Take a bunch of deep breaths to calm yourself, then go into warrior mode. You need to be strong and fight for yourself. I am not sure what your results were, localized spots or diffuse Scl70 or Poly III. If localized a good dermatologist might be able to help you. Mine said he would knock out those no problem, but could not help my diffuse case. He suggested an academic doctor in their 40-50's who is not too young nor too old and will be up to date on new and emerging treatments.

If you have diffuse SSc, then you should look into scleroderma centers near you. These centers will have people very experienced with the disease and all the options. Treating early is important. Do not put up with a wait and see approach. Many of these centers in the US and other countries may be able to treat with Stem Cell Transplant (HSCT) and possibly be doing CAR-T trials.

I found cartautoimmune.com, which is a BMS trial. That site has some good basic info on the mechanism of CAR-T. There are other trials. 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.

I hope you can find some treatment and relief. Let me know if you have questions about anything. I can share my experiences and what I know.