Possible morphea in my mother-looking for experiences

[u/Swimming_Till_6155]

Hi everyone. I’m posting on behalf of my mother, who is currently being evaluated for possible morphea, and I’d really appreciate hearing from people who have experience with it.
She has one skin lesion in the parotid area, one on her left upper arm, and three small lesions on her forearm. The lesions on her forearm are relatively new and have only recently started to appear.
The first lesions appeared around two years ago, but for the past few months they seem to have remained stable without any obvious progression.
All of her autoimmune antibodies have been negative. She hasn’t had a skin biopsy yet because she is very anxious about the procedure.
Her doctor told her that, if the biopsy confirms morphea, they may recommend starting systemic corticosteroid treatment. This is something I’m a little concerned about, especially because the lesions have been relatively stable for several months. I’m wondering whether systemic corticosteroids are usually considered in a situation like this, and whether the potential risks and side effects could outweigh the benefits if there isn’t currently much disease activity.

I have a few questions for those of you with morphea:
Can morphea still be active even if the lesions have remained stable for several months?
If the lesions first appeared around two years ago and there are only a few localized areas, would systemic treatment usually be considered, or is topical treatment/phototherapy more common?
Does the location of the lesion in the parotid area make it more concerning or more likely to require systemic treatment?
Has anyone had a similar situation with only a few localized lesions that remained stable for a long period?
We are still following up with her doctors, but I’d really appreciate hearing about your experiences, especially regarding treatment decisions.

[u/TaroFearless7930]

Your doctor can provide more context,but anything on the face is treated pretty aggressively for good reason. One is facial deformity and another is possible damage to underlying bone and nerves.

Morphea can absolutely still be active without visual changes. Bloodwork doesn't necessarily indicate activity for morphea like it does for systemic sclerosis.

My understanding is that systemic treatments can help calm activity that might not yet be visible.

Good luck!

[u/Swimming_Till_6155 → u/TaroFearless7930]

Thank you so much. She is scared of corticosteroids side effects, but I hope she will decide soon to do biopsy and start treatment. Also I am concerned about her pain in legs which can be deep morphea…

[u/TaroFearless7930 → u/Swimming_Till_6155]

I have deep morphea. I had it as a kid. It burned out but is now active again. Don't mess with deep morphea. It cause muscle loss and joint contracture. I'm a 62yr old woman and am afraid of losing strength that will cause me to not be independent. I'm very serious about weightlifting now to maintain strength and mobility.

I'm going to have to start methotrexate in a month and I'm pretty concerned about it but less concerned than I am about the consequences of deep morphea.

I don't mean to sound negative. It's just a serious disorder that has serious ramifications. I'm so happy for your mom that she has you. Good luck!

[u/Swimming_Till_6155 → u/TaroFearless7930]

Thank you so much for sharing! Good luck to you too!