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Sweet

Facial scarring...out of nowhere?

30 posts in this topic

Hi Everyone,

 

A few months ago my forehead right above my eyes and into my eyebrows began to itch. About a month ago, I noticed the skin appearing tighter looking and a bit shiny. Over the past month, I've noticed scars around my mouth, chin, and now on my cheeks and forehead that are appearing literally over night. The scars on my forehead are thin white lines that go vertically. The scaring around my mouth and cheeks are flat slightly raised rounds spots. I'm getting concerned because its happening fast, and I've never heard anyone talk about this. Also cause I'm vain, and don't want to live with big, flat, white scars all over my face. Make up does not cover them, actually it makes them looks worse. I made an appointment this next Thursday with a dermatologist. I hope he can help, but I fear he won't have a clue.

 

I'm wracking my brain, about new meds, lotions, (although there is no rash, just scarring) etc, nothing is jumping out at me.

 

Has anyone else had this problem?


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Pam,

 

I had the itchy spots above my eyebrows and now have about a centimeter round scar on both sides where the itch was, plus one on my temple that never itched. It seems to have stopped at that.

 

I asked my dermatologist about it and got the "hmmmm" that means "I don't have a clue but it doesn't look too serious to me". I'll be really interested to hear what others say and your dermatologist too.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Pam,

I have not had anything like what you describe. I did develop a facial rash around the lips about a year ago and went to the dermatologist. He took one look and diagnosed it as Perioral Dermatitis, something I had never heard of. I was very impressed at how quickly he made the diagnosis and apparently he was correct. He put me on antibiotics for 2 months, told me to stop using the particular toothpaste I was using and it went away and hasn't return. So hopefully, your dermatologist can diagnose your condition and get you on the way to recovery. That's why we have specialists. Please let us know what you learn. It's curious.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Maybe a thought should be given to old lotions, makeup and soap. Could you possible have developed a reaction to things you have used without problem previously?

If sounds very frustrating and I hope that you find the answer soon. Hugs- Cindy

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Sweet, I don't have a remote clue.

 

Will be interesting to hear what your dermatologist says about it on Thursday? Hopefully, he/she will know a little more about it than Jeannie's dermatologist knew when she went. With luck, maybe yours will also stop like Jeannie's did as well.

 

Good luck with your appointment.


Sending good wishes your way!

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Oh I like what Janey said. I hope It's something easy like that, but this is actually scars... so I have a feeling it's the sclero working it's magic. :( This will be a tough transition of mental coping for me if that is what it is.

 

Appt Thursday, will keep you posted.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet,

 

Did you find out anything from the dermatologist yesterday? I'm crossing my fingers for you, hoping it is something that can be remedied.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Pam

 

How are you getting on, I hope the marks aren't permenant. I don't know of any woman who wouldn't be concerned about facial changes, it was one of my first concerns when diagnosed.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,

 

The dermatologist feels it's "The sclero". My entire body feels like I have a sunburn now, but I don't, but I am red. The focus of this is on my forearms, shins, and face. My face is changing daily, with a white scar, shiny patch, tight patch, dent, scaly patch etc. My shin, are very tight, I can barely pinch the skin. My joints, fingers etc are all more painful than normal, and I haven't felt well at all. The dermatologist doctor told me to see my rheumatologist. So I called and he doesn't have any open appointments for months, but I can get into see his Nurse Practitioner on May 27th. I'm a very vain person, so this skin change is the worst thing that can happen to me. :temper-tantrum:

 

I'll let you know what the NP say after my appointment.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Pam,

 

I'm sorry for all the symptoms you're experiencing now. Having it all go haywire at once is a bit much, isn't it?

 

I really don't know what to say. Are you okay waiting that long? Do they have any flexibility at all, for more urgent situations?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hey Shelley,

 

Ya, I think I'm OK with waiting. She did say she would call me if there were any cancellations, but knowing this Medical assistant as I do, she won't call even if there was an opening. I guess I should really look at all of this differently and be glad that basically for 10 years I have had it mild compared to others. I just don't want to look different! :emoticon-bang-head:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet

 

I'm sorry to hear that too. I was so wishing for better news for you. Perhaps the nurse practioner can get you into the rheumatologist a little earlier, once you get there, if needed? Take care.


Sending good wishes your way!

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Hi Sweet-

I'm so sorry for your having to wait like this. I would be upset if there was a cancellation and no one called.

If the MA won't call you, would the receptionist?

Hugs and lots of them- Cindy

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Hi Sweet,

 

I feel so for you. I know what is happening is the absolute worst nightmare but please m'love always remember to those who love and know you see that you are a beautiful person with a story to tell!! Beauty is skin deep only and what's inside is what's important. :emoticons-yes: That woman sounds horrid bypass her or report her for lack of professionalism you should not be treated in such a manner!! Keep faith ban the mirrors and just be....You :emoticons-yes:

 

Warmth and support,

 

Lynn xx

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Just got back from seeing the rheumatologist. They feel the changes in my face is a flare,and progression of the disease. A couple of the patches looks like Morphea...Also the hardening of the skin on my legs and the severe pigment changes are all progress... they want me to start on methotrexate........I just don't know if I want to do it!!! I'm so exhausted physically and mentally, I was so hoping that since I haven't progressed too much in 10 years, that I would stay like that. ... I just don't know what to do. I'm so torn about whether I should start the methotrexate or not. Ugh. I guess if I would have seen MY rheumatologist I would feel a bit more grounded and probably would know what to do, but I couldn't get into see him of course so I saw one of his NP. She was great, I really liked her and she seemed to know her stuff...I just wish I knew what Gary thought... (rheumy) Anyway, I'm a basket case.

 

Shelley, Jeannie or anyone, if you can help me locate any threads where we discussed pros and cons about methotrexate I'd appreciate it.

 

 

OK heading off to continue my nervous breakdown and panic attacks and leave you guys in peace.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet,

 

Oh, you always make me either laugh or smile. How do you manage that, anyway?

 

I looked up a methotrexate thread for you. Just read all the warnings really carefully, including avoiding use of all NSAIDs and alcohol, as it can cause fatal interactions/effects.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Sweet ,

 

How about just increasing the Plaquenil dosage or at least giving that a try till you decide to go on the Methotrexate? Just an idea. I'm sorry you're dealing with this now.

 

Take care, Everyone.

 

Margaret

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Sorry you are having so many skin changes Pam,

I too have changes on my face, and I am not happy about it, i don't want to look different either!

I have yet to see a dermatologist about it yet though. I keep meaning too, but I don't know whats holding me back.

 

I would also be interested in anyone elses experiences with Methotrexate as my rheumatologist suggested this on my last two visits and I just don't feel ready yet, I don't know if its because I don't have a proper diagnosis or I just don't want to put any more pills into my body.

 

Big hugs xo

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Thanks Shelley, I will read through everything. Glad I can make you smile. :)

 

Margaret...hmmm never even thought about that... I will talk with my doctor about it, thanks so much.

 

Kiwi, I think sometimes it's easier to ignore something because then we don't have to deal with it, or we can continue on in our denial process...not always good, but we do it.

 

Thanks guys.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet (and Kiwi mum), you were both asking about peoples' experience with Methotrexate. I have been on Methotrexate (self injection) for almost one year now. I was previously taking Cellcept, but had to stop because of a rare side effect (oesophageal haematoma). Re Methotrexate - it's a love/hate relationship! On the plus side - my skin has improved a lot. On the minus side it makes me feel unwell for 2-3 days (nausea, lack of energy), and I have had to stop temporarily on a couple of occasions due raised liver enzymes. I would dearly love to stop taking it, but know that this might risk progression of the skin thickening/tightening. I think the only way to decide is to give it a try - it effects everyone differently- and see what the balance of positive to negative effects is for you. good luck

Lizzie

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Just a little update:

 

As some of you may know, a few weeks ago I was in a flare that I’ve never really experienced before. (hardening of skin on my calves, forearms, and scaring on my face, and more vessel damage) My rheumatologist suggested I move toward the next line of treatment which is Methotrexate, I would get injections once per week on Tuesday. Of course along with that comes all the side effects similar to chemo, and after careful consideration, I’ve decided to refuse treatment at this point. I told him I would reconsider in the fall. I just don’t want my whole summer ruined with being sick 5-6 days a week if I can put it off for a few months. They put me on steroids which has helped.

 

For the past few weeks I’ve been suffering with tachycardia (rapid heart rate) running at about 92-120 beats a minute non-stop, with some chest discomfort, tightening, left arm tingling and flutters.

I went into the doctor yesterday and ended up in the hospital for 6 hours. They did blood work, for which I don't know results yet, an EKG that was not normal, something to do with some segments of the beat should be long and mine were short, and some should be short and mine were long, they did an Echo, which was not normal, it showed pericardial effusion and basal septum dysknesia meaning it's bulging out where it shouldn't, I have a 24 holter monitor on now, they did spirometry which I didn't do very well with, my lungs are working at about 80 percent, and they are scheduling a nuclear scan of my heart. Waiting for that appointment time. In the mean time he put me on Singulair (tabs), QVAR,(inhaler) and Veramyst nasal spray. When I get the results of the holter monitor I'll let you know, and of course I'll let you know about the heart scan.

 

Anyway, other than that I had a terrific day LOL


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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