Help with Morphea treatment

I can understand your pain. I had morphea on my thigh about two decades ago. The itchiness was insane. The dermatologist I was seeing prescribed different cortisone creams, none of which helped; but, I must admit I wasn't very compliant. After a year or so and with much effort, I didn't let myself scratch the area. Eventually, the itch stopped. I'm still left with discoloration of the skin, but no itchiness, so I guess the morphea just burnt itself out. I don't recall any muscle ache or excessive fatigue, nor did I change my diet.
Wishing you the best.

Thank you so much for your reply! I have read there are degrees of Morphea, and it can go down to muscle and bone, which is pretty scary. Hopefully, this won’t be part of my story. Sounds like yours was localized. I too have the older plaques that have turned large areas of my skin brown. New ones pop up as bright red. It seems like a lot of foods will kick off a flare of symptoms. I did an elimination diet and the one constant culprit is wheat. Also can’t stand some fabrics or elastic on my skin. It’s like every nerve ending is so reactive. An unexpected but appreciated effect is that I have lost 20 pounds since August. The fact yours disease eventually “burned out” gives me hope. Thank you 🙏

Other bits of advice I was given was to only have soft cotton clothes in contact with my skin.--no synthetics, woolens, etc.; to try to limit the length of my showers; and to use as cool as possible water in the shower. Hope that helps.

I know I’m late to this post but, I have Morphea as well. It started when I was in High school (I am in my 20s now) and for a while no one did anything about it until I advocated for a test to see my levels to show autoimmune. Well I went on pill form of Methotrexate for about 2 years and then got off it seemed to make it just stop growing. I went to physical therapy to try to keep it moving and all so it wouldn’t go into my bone. It is now 2024 and I am on methotrexate again because it is spreading. This time shot form and it is seems to be more tolerable and it is better for my GI because it doesn’t pass through, but I can’t do light therapy as I am allergic to the sun so this is all I have besides creams. I hope you are doing well and hopefully maybe treatment has been successful!

I also just came across this post but I’ve been dealing with morphea for about 6-7 years now. At first it started as a darker patch of skin on the back of my shoulder in high school and has since spread down the length of my arm- only on one side- also known as linear scleroderma. I have sensitivity where the patches are especially if I hit that area of skin it radiates a different pain than if I were to hit something against normal skin. I have one small patch on the top of my foot as well. The first medication I was put on was methotrexate via subcutaneous injection- which I believe I did weekly. I would say I was on that for around a year or two. It had slowed down the rate of the spread and felt like the patches stopped spreading. I can’t remember exactly but I think there was a period of time that I was not on a medication after using the methotrexate. Eventually, I did need to go back on meds as it kept spreading on my arm. I started taking Cellcept (mycophenolate mofetil) for about a year and then added Xeljanz (tofacitinib) to take together orally. I am currently still on both and feel like it has slowed the rate of the spread but not completely. I have also been diagnosed with juvenile arthritis which is linked to the morphea and its effects on the underlying tissues. I experience joint stiffness (mainly on the wrist on the side of the morphea) and muscle cramps on the leg (the side of the morphea but no patches on leg). I’ve gotten a nerve test, MRI, and an ultrasound on my leg/foot to try and see what’s causing the muscle cramping but they did not find anything. So that part is still sort of a mystery but I’m convinced it is because of the morphea since these things only occur on the side where the patches are. The most frustrating thing is that the cause is unknown and the underlying root cause is not really investigated. I have seen that people that change their diet can go into remission and want to try this approach because I don’t want to be on medication forever. It’s frustrating, confusing, and can be scary but I think doing your own research and finding other people’s experiences definitely help in trying to understand this condition and get it under control!