ADVICE ON SCALP MORPHEA

[Oztrax]

hello everyone, had a tuff 3 months, painful lines (like stinging pain) on my scalp developed in mid july (2024) with a constant headache. Was 100% before this. GP and ED were not really any help.

I saw a vascular surgeon 2 months later as my carotid artey on side of neck was hard and painfull. He did a CT scan and ultrasound to look at these arteries which came back OK, but he said I should get the lesions on my scalp checked and biopsied by a dermatologist. Unfortuneately there is only 2 dermos in my city and cant see one till early NOV. Also my GP is away for another week.

I saw my Rheumatologist who treats me for psoriatic arthritis which is fine ATM. Some blood test were done over the last few weeks, one being negative ANA. So he was not overly concerned but also said to see a dermatologist obout my scalp lesions.

Over the last 2 weeks the hard lines became welts on my scalp (4 places and not on forehead), then they became less painful and formed wells/valleys that feel like they go down to my skull bone in places. Thru all this I just had the constant headache (except for 1 week were had 20mg prednisone for 5 days) and extremely bad fatigue, felt like i had a fever/temp and was very weak.

This would seem to be Morphea/limited Schleroderma but I thought these areas took years not a ferw weeks to form and become depressions in my skin.

Pretty sure this is Schleroderma, hopefully the localised type but now have soft large patches (like cysts) on my ribcage and chest, not really painful. Also another small patch on my spine lower back that was painfull and stinging and now is a small sunken area, but not painful anymore.

Havent been able to go back to work for a month now, dreadfully fatigued/tired and still have constant headache (worse when I wake up). Rheumatologist gave me another lot of prednisone 20mg for 5 days which I started today. Be nice to get some relief if it works but dont have any other medication after this.

Am concerned that the Morphea areas literally take only a few weeks to start/progress and end up sunken skin. In areas I cant see properly to monitor. Has anyone got any experience with these areas forming so quick and making me so unwell

[Angelemz85]

hi. I’m waiting to see a dermatologist for what the doctors believe is linear scleroderma. I have a dent/line going from my eyebrow all the way up to my scalp and it’s now starting to go in my hairline too. I get headaches most days, am very tired all the time, and get sharp pains and a burning sensation through my dent. sorry you are going through something similar: I’m here to chat if you need too

[Oztrax in reply to Angelemz85]

Thanks Angel85

mine is more under my hair/scalp top. sides and back. Glad you said its hurts and you get headaches as I havent read that anywhere so far. Also got 1 area size of a dollar coin on my mid back, its not painful now but has formed a crater. The bad ones on my scalp have now stopped hurting over the last week or 2 and some also have formed deepish craters. Had 5 days of prednisone 25mg/day 4 weeks ago and felt a lot better(headache went away) but the painful lines didnt totally stop completely. Managed to get another 5 day dose of prednisone 20mg from a Rheumatologist started it yesterday. No headache waking up today, probably will come back after I finish this dose. Must be some drug out there we can take to at least ease the headache and help with fatigue. CELLCEPT can be used from what I have read. I cant work anymore the way I am, headache is at migraine level every morning apon waking. Fatigue is too bad to be on my feet more than a couple of hours per day. LinearMorphea follows what are called BLASCHKO LINES dermnetnz.org/topics/blasch.... Have a look and you will see yours on the diagram in this link.

[Oztrax in reply to Oztrax]

Have read quite bit last few weeks about this condition, I guess if it wasnt for the constant headache and fatigue It wouldnt concern so much. So am going to have to stop work, am 60 years old so can retire or try to get a sickness insurance policy to pay me for 2 years. If you have any questions or something to share I am keen as no-oned seems toi reply much on this Schleroderma forum, will PM you as well if that works out. Am in Australia so time difference means answers can be delayed, like your evening my morning etc