Morphoea any info?

[Katglasgow]

Hi I've just been diagnosed with morphoea which is an extremely rare side effect of radiotherapy. I'm not sure if there is any other people here with this as I am struggling to get any info. Even my surgeon hasn't had 1 case in 32 years! Dermatology cant tell me much either. Was misdiagnosed since may and skin biopsy confirmed. They say usually I would get an immune suppressant drug but they dont give to recent cancer patients so in limbo until results if bloods xrays etc they say it is still spreading rapidly and spread below and above my affected breast into my neck which could cause breathing difficulties and also donw into my ribs area. Any advise or information would be great thanks

[Shadow15]

My son has linear morphea, but not due to radiotherapy. If it is morphea it generally just affects the skin and sometimes the fatty and muscles underneath. Ask to speak to a rheumatologist as the tend to teat autoimmune diseases. SRUK or the Mayo Clinic has some good information on this.

My son is on methotrexate, but understand that you can't go on that. What about steroids, as initially he had an infusion of this to kick start his treatment. He also had a topical cream to rub on the liesions.

I hope this helps, good luck.

[Katglasgow in reply to Shadow15]

Hi thanks for reply. I have been on high does of oral steroids for 2 weeks now and have a topical cream. They had to reduce steriods due to me getting bad night sweats and no sleep. I was 35mg now 20 a day. They are definitely helping as my breast area was solid and very swollen. It is now slightly softer but the condition is still spreading. Since may it has gone from underside if breast to all over it under it and up to my neck so not contained to radiotherapy site anymore. Hopefully that can contain it. Can I ask if your son has side effects from his meds and will it clear up his condition completely? Thanks

[Shadow15 in reply to Katglasgow]

He mainly dreads the injections, some days he does not have much of an appetite and can have loose stools. I have not heard of any other treatments other than immune suppresents. There are others used other than methotrexate, cell cept is one but assuming you can't go on any of these due to the radiotherapy? My sons liesions are on his head, face and neck. He has had some stem cell transplants which seemed to have filled them out and helped stop the progress of it, however the discolouration or hyper pigmentation will not go away. If you need anything else, feel free to ask. If you are on Facebook there are a few scleroderma support groups, which morphea falls under x

[Katglasgow in reply to Shadow15]

Thank you I will have a look on fb. I did try but was searching for morphoea instead if scleroderma. Will look now x

[Jmiller623]

Hi Kat. I’m really sorry that this is happening to you. I do not have morphea but did look into it at the beginning of my diagnosis. It looked like the fat was wasting away in my face causing it to become uneven but found that this was neuropathy related.

However, during my journey, I did look at how morphea is treated. For many it seemed self limiting and responsive to steroids. From my understanding, its really hard to predict how far it will spread. Some continued treatment until it visibly seemed to stop spreading. Dermatologists should follow closely with timeline pictures to assess rate of spreading. I did see that some dermatologists use fat/polymer injections for the face. Some used Botox in the facial area to help achieve symmetry but this seemed more up ENT’s alley. Much of what can be done cosmetically seemed to fall under dermatology. Maybe, you could find a dermatologist who has seen a case or two? I felt like most of the case reports came from derm journals.

I really feel for you. I do hope you find someone who can help you. I know it must be a scary time. Sending many hugs your way. ❤️