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

[OldTed60 in reply to Oztrax]

Hi I have Systemic Sclerosis rather thank Schleroderma but I wonder if you can get to a dermatologist to check out the rapidly evolving lesions, diagnose and start you on immunotherapy - preferably one that helps your PsA as well such as Methotrexate? Another question: are you certain that the headache/ migraine related to the skin changes or might it actually relate to neck arthritis? I have severe headaches, especially after bad nights sleep, and mine are cervicogenic due to osteoarthritis in my cervical discs and my sleep and work position. My neck doesn’t usually hurt so this is referred pain comes up via the occipital nerve. Just a thought as you have PsA which is strongly associated with cervical spondylitis.

[Oztrax]

Thanks Ted, will be see a Dermo in a couple of weeks and hopefully he will do some punch biopsies to confirm SCH. My PSA has been really only in my fingers and toes (of which a number are now seized or deformed). Been taking 20mg Leflunemide for a number of years now which has kept PSA at bay. Have been on Methotrexate previously which I had a lot of side effects from, only lasted 3 months on it.

Are there other immuno suppreso drugs like Myocephalate (Cellcept) that work well withe this disease ?

Seems the T cell suppresants work better.

My chest X ray was clear last week, CT only showed air cells in mastoid area of head as suspiscious. Hopefully Dermo will ask for a head/neck MRI. Some of the sore area have been in my neck area as well, but the areas that developed further are only on my scalp ATM.

Blood pressure has been very high 185/124, only had ECG and blood test so far. controllable with medication. Seeing cardio specialist in next few weeks.

My ANA blood test is negetive, so was hoping it isnt systemic

Will try to get a SCL-70 test soon

[OldTed60 in reply to Oztrax]

I was really thinking of osteoarthritis or inflammatory arthritis in your neck. Mine doesn’t cause any pain or stiffness in my neck, but my neck feels unstable and, if I travel far in car or other transport or sit working with neck at an awkward angle the awful headaches start again. My neurologist has also diagnosed me with late onset aura migraine which I’m convinced are autoimmune and relate to my Sjogren’s and also hypermobile spectrum disorder and related scoliosis.

I don’t know if Mycophenolate would be helpful for you but I’m guessing it would because my dermatologist (skin cancer) has always supported me taking it and it’s certainly a gold standard DMARD treatment for systemic sclerosis, myositis, vasculitis and lupus. It would be very unusual but not impossible to have systemic sclerosis without ANA or other specific antibodies. But you would need your rheumatologist to run all 13 scleroderma antibodies rather than just Scl-70 to be sure as there are some very rare scleroderma antibodies like mine. From what you’re describing it sounds more like linear or morphea, quite possibly with other arthritis related complications - maybe inflammatory or maybe wear & tear.

It’s a very large autoimmune or auto inflammatory jigsaw for many of us and can take many years or decades to get all the pieces in place. Mine, for eg, started suddenly in 2011 as sudden onset seronegative RA with pre-existing hypothyroidism, but rapidly morphed into a more vascular and systemic disease, confirmed by lip biopsy with ANA as Sjogren’s, then finally seropositive Systemic Sclerosis and hypermobile spectrum disorder. I’m describing this chronology purely in diagnostic terms because many of my symptoms of these started as far back as childhood and I’m now 61.