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It's An Autoimmune Disorder

I wrote a little about this in a blog a couple weeks ago.  But I thought that maybe I'd get more responses if I put it here. 

I don't know much about this disorder--other than it's an autoimmune thing.  The only symptom is a "bruise" on my leg that hasn't gone away in a whole year.  I went to the dermatologist and was told that it's almost as if a part of my body is rejecting itself (like sometimes happens after an organ transplant).  I've never heard of such a thing.  Has anyone else?  He said that in 90% of cases, a topical steroid cream solves the problem, but in 10% it becomes systemic.  He said that if the cream doesn't work, I'll have to have a biopsy.  That word scares me.  The cream hasn't helped at all in two weeks, and I'm getting worried.

trixi trixi 41-45, F 14 Responses Oct 1, 2008

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I was diagnosed with morphea 22 years ago. I had two flare-ups in a few months, one on my leg and the other right across my tummy and flanks, and one breast. I was absolutely heartbroken. The doctor simply went 'how interesting, don't see that often, no cure, hopefully it won't go right through your system, bye'. For a long time I was shy about the marks. But then I eventually thought, 'actually, I'm pretty remarkable, I have a very rare thing and I carry the marks of surviving it, so sucks to anyone who judges me!'
If it helps, they soften and darken over time and just look like birthmarks or bruises. When I was pregnant with my children, I often got asked if my husband was abusive because of them! Poor man got blamed!
I am actually a midwife and I now know that having morphea can increase risks of pre-eclampsia in pregnancy so it's important to let your doctor know if you do become pregnant, as you will need extra tests of antibody levels and monitoring.
Our bodies have battled themselves and these are the battle scars because we have fought hard. They will get less as time goes on, less itchy, less uncomfortable and more just part of you.
Oh, I had no treatment, by the way. There was nothing available then. With autoimmune, no dietary changes will help, it's just how you are and you just have to look after yourself, use the treatments offered, be kind to yourself and let it run its course.
And remember, you're pretty unique. Doctors get very excited when you go in for any reasons at all. Get used to medical students being called in to admire you :)

Can I just say that all these people going on about how their morphea lessened or stopped when they used these fad diets, supplements etc....morphea has flare-ups and naturally goes away again, and in all these cases on here, it sounds like that's exactly what has happened. Saying it was because of some vitamin or whatever is rubbish. It's simply doing what it does, it's self-limiting and is definitely NOT linked with gluten or mineral/vitamin deficiencies. A normal healthy diet and lifestyle, with no nutritional extremes, will ensure that you don't get run down, (and don't stress all the time about food!) which can increase the chances of an outbreak recurring.

I was diagnosed with morphea a couple months ago. The very first thing i did was change my diet COMPLETELY. I eliminated processed and artificial foods, colors, flavors, sugars, etc. I also got rid of dairy, wheat, gluten, caffeine, and alcohol. I did that for 3 weeks. So basically I only ate natural unprocessed foods for example, shakeology by beachbody became my breakfast of champions (and still is). I used the vegan chocolate since i had eliminated dairy. If you have ever looked at the probiotics and amazing natural things that are in that shake....its wonderful and it does wonderful things to your body!!! Lunch would be a salad and a lean meat (not red), and dinner would be a protein packed juice from my juicer. Also, I snacked in between meals with things like, almonds, sunflower seeds, apples, a kind bar, uber bar, lara bar, vegetables like carrots or celery with a gluten free/dairy free veggie dip, etc. In addition to that i workout daily or at least 5 days a week now, no exeptions. I am so grateful for doing this, because my symptoms are gone! I'm not tired, my lesions have completely burnt out, no new ones, and most of them have faded to the point where i can't even tell they were there! I used a topical steroid for four weeks so two weeks on, two weeks off, and two weeks back on. That helped a ton also. I keep hearing that a persons diet/ lifestyle is EVERYTHING. If you truly want to beat this disease and keep it away, you have to change your lifestyle COMPLETELY. After the 3 weeks of my diet change, i still adhere to 95% of what i started doing....sometimes, i do still enjoy things that i used to enjoy, but to me, my life is way more important to me than crappy foods that just temporarily made me feel good. The book i used is called "Clean" by Dr. Alejandro Junger MD. It costs less than $5 on amazon kindle. It will be the most important $5 you ever spent. So if you truly want to see change, and reversal, please understand that it involves a lifestyle change but YOU CAN DO THIS!!! No one should have to suffer with this disease!! Thank you for reading my story!! Sincerely, Jennifer.

Get the biopsy that's the only way to know don't be scared! It won't help for the most part it will only be something cosmetic.

i am 16 going on 17 I've had morphea for 3 years now, the doctors have given me creams after creams to stop the itching and make my skin less leathery. none of them have helped they told me that after ten years it will start to go away on its own there is no cure and no cause known. 3 years and it seems to get worse by the day. its to the point now where i scratch it in my sleep breaking the skin. my spots are on my legs, my back, my breast, my hips, my stomach, and i think there starting to develop in my underarms as well its a hard struggle they offered me injections but my mom says no because there's a chance of side effects that have to do with my liver. it sucks you know being 16 and not going swimming because i fear what my friends might say its a bad age to be stuck with this self esteem is low enough with out a skin condition to add to it.

Stay strong! We're still beautiful marks and all!:)

since last year I noticed some skin rash on my breasts, i thought the metal support in my bras were causing this. I could feel some lump, and went to see a doctor and I did ultrasound/mammography. Results came out I had a benigh lump which may be the result of calcium build-up. Talked to the doctor about the discolouring of my skin and he was not really interested to send me to a skin specialist. I went under some stressful situations as I lost my mother a few months before. This started somewhat in July 2012 and finally I got an appointment with a skin specialist in Jan 2013. A biopsy was done a month later, to have the doctor telling with a smile, I can do nothing for you, there is no cure, this is morphea. Meanwhile, I have had several patches appearing on my lower part of my belly, it seems where I have got most fat. I cried inwardly and said to myself, where Man fails, God will triumph and I trust God, in his mercy, will set his eyes on me. I am new to this country and I have 2 children...I have read the article about the gluten free diet and aloe vera, I'll start this and leave everything in the hands of my Maker

You made my day! :) Its been stressful, I will be 32 next month. I have had dr after dr not know what's wrong since 2011. This past Wednesday April 7, 2013 my biopsy stated I have morphea. I'm so strong but this took me to dark place. Until I said you know what you've made it through a lot and man has let me down. Yet God's always constant. Reading your story gave me more inspiration! Thanks for sharing! I have a daughter to live for and I will do all I can to remain healthy and not let this ruin my endeavors! Best of luck all and to you :)

What's the diet about? I have generalized Morphea. Please share.

I was diagnosed with morphea on my face a month ago, the dermatologist said i'd have to get a biopsy to be sure. My world stopped when he was debriefing me about what morphea and the biopsy, i wasn't really listening... i couldn't listen... the voice in my head was louder than his. i kept asking my self how did i get this and where did it come from, i'm 23 and make enough for food, pay the bills and get buy. :/ Took me quite a while to collect myself after that, after i left the office i spent all my money on food and binged.

I got the results of the biopsy after two weeks, he prescribed a protopic ointment to use for two months, its been doing well and i already accepted the white spot on my face its part of who i am, i barely notice the hardened skin since the ointment keeps it moist. :)

yesterday, i felt an itch in the armpit area i went to the lavatory to check and it was a little red linear area i'm concerned maybe my morphea is spreading to other parts of the body.

sorry for the fragmented post, i'm worried about the itch so i cant think straight.

I just found out today that I have been diagnosed with morphea. Thank-You to everyone who has posted comments. I am scared to death. I have also just been diagnosed with dibeties. I am going to ask my doctor if the two could have anything to do with this. I will post his response. I also have had wondered for awhile if I have a gluten intolarence also going to be tested for that if there is a test for this. I have a hard battle ahead of me trying to figure out what I can and cant eat with everything. I will continue to post my outcomes of things that I have tried and things I find out from the doctor. I am also going to try the aloe vera method as posted above. Please lets continue to post our findings and outcomes of out diffrent experience. I am greatfull to find this site, I don't feel so alone.

Christie from Southern Oregon

Hello,
I was diagnosed with Morphea when I was 15, about 14 years ago. It started with a scar on my leg, which I thought was a burn and a bruise in the back of my leg, which I thought was normal since I played soccer. The Morphea spread all over one leg and started behind my knee on the other leg. I also recently got it on my arms on the joints. I have heard that Morphea will likely be around the joints. I have had no issues as far as pain, its only been physical and I am pretty confortable showing them off and telling people about Morphea, I go to the beach, wear shorts. I think its important to not be self concious. On that same note I am terrified if it ever shows up on my face or takes over my entire body. I am very excited to find out about this forum and to know about the home remedies. I am willing to try a gluten free diet and drink the Aloe Vera. Glucosamine is very good for the joints so its understandable that it might improve the situation. Please keep posting your progress. It is very important to be informed and help others in the same situation!

What's the diet about. Gluten free and aloe Vera. Kindly share.

No dietary changes will help. Eat normally and healthily, to ensure your body is in good shape to fight the flare-up.

Hi BB,



I'm also in the Boston area. I have systemic lupus and morphea. In my case, I believe they are related, as they are both the result of a malfunctioning of the immune system. I was concerned about a possible systemic aspect of morphea as well. However, Dr. Vleugels at Brigham & Women's Hospital assured me that systemic scleroderma is very different from morphea. She runs the Connective Tissue Clinic at Brigham & Women's and seems very knowledgable about the disease. I had seen another dermatologist at UMass that was not helpful at all, but the doctors at B&W so far seem very thorough and informative.



Plaquenil is often used to treat morphea, but if that's not working for you, methotrexate is another option you may want to ask your doctor about.



Hope that helps. Good luck.

Kate

Is there any connection to Lupus from Morphia? My aunt died of Lupus.

I have been diagnosed with Morphea. I am worried about it becoming systemic. The tests were all NEGATIVE but I was the subject of grand rounds and they determined it was Morphea. I am on a Malaria drug. Years ago I had hives. I wonder whether this is related?

I think that I eat a basically gluten free diet as I don;t eat flour or sugar. I like the Aloe vera solution. Has anyone else had success with other therapies.

I have a major rash which I contracted right after I was on the medicine. I would like to know who is the biggest guru in the world on Morphea? Any ideas?

BB in Boston

BB

Wow. My daughter now 24 got her first lump almost two years ago and now her poor legs are covered. The biopsy scar is the worst but some of her spots are like thick skin and the rest break out in a smooth patch.



Her dermatologist has given her several different kinds of greasy creams to apply several times a day. They are messy and it's taking a long time to soften these spots. Some look like the are fading in the center with a darker ring around them.



She had congenital cataracts and a hammer toe along with problems with her teeth. We thought this was another system of her birth defects. Was anyone else with Morphea born with birth defects? There could be a connection. Maybe?



I will be telling her about these vitamins because anything is worth a shot. I pray that her scars go away. Right now she looks like a leper on the legs. Good Luck to everyone.

My family Doctor's face lit up when he examined me. "This is exciting" he said, " I've been a family Doctor for 35 years and I've never seen this!" Words you want to hear from your Doctor. He apologized for his enthusiasm and made me promise to call him and let him know the specialists diagnosis so he wouldn't have to wait for the report to come back to him. It was rare these days he said when he saw something new and it made his day.



Waiting times to see a specialist in Canada are often 4-6 months, so by the time I saw the specialist I had already diagnosed myself by looking at skin diseases online. I was nowhere near as excited about the possibilities as my family Doctor.



The specialist was equally as excited as my family Doctor to see my disease. As he counted my spots and noted the rare areas of occurance he snapped pictures like a photographer on a photo shoot. The 38 spots and their occurance over my entire body (not my face) had him dreaming about involving me in a medical study he'd like to do using light therapy. This could be a big break through for him.



He first prescribed steroid cream to help diminish the lumps I had all over my body. When I finally got my biopsy results (non-systemic,) I was so sick of ruining my clothes with the greasy creams and non results, I decided to try my own "cure." The Doctor was upset that I wouldn't participate in his light therapy trial as I had already completed his control period of steroid use. Ticked me off that he was using me as I was unaware that the light therapy was delayed as he gathered data on the non-effectiveness of the steroid cream.



Anyways, I started drinking Aloe Vera juice and taking glutocosamine and vitamin E on my wife's insistance. I drank 1 tbsp 3 x a day of aloe vera juice. Not sure about the glutocosamine and vitamin E amounts as my wife was doling out the vitamins to me, God bless her, but I took it in the morning and before I went to bed. I don't know if it is what cured me but I was told the scars would never go away and I can tell you that the only noticibly visible scar I have is from the biopsy and 2 on my stomach which appear to be fading. I never had another spot appear after I started doing as my wife suggested, and the spots were cropping up with regularity prior to my wife's vitamin regimen.



Coincidence, I don't know. I can say that I have no callogen build up in any part of my body. You cannot find any lumps on me. I have 2 noticible fading scars out of 38 that you could feel as well as see 2 years ago.

.

I've never been back to a Doctor about this. I've never posted anything before. Maybe this will help someone else. I'm not saying this is what cured me, but I am saying that my morphea symptoms disappeared after I started doing what my wife suggested.

Could you ask your wife how much Vitamin E and Glucosamine she had you taking? My dr thinks I have Morphea and I am willing to do anything to make it stop!

Thanks for sharing I will try this out! :)

Hello could you kindly fill me in some more with the aloe Vera diet. I have Generalized Morphea and have started UVA-1 phototherapy. And info would be greatly appreciated.

Please give some more info as to what is helping you. I have what are now morphea "scars" all over my body. Non on my face thanks be to the almighty and it looks like it has stop spreading once again praises to our Creator! Please shed some insight on me any help would be help!

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I've been diagnosed with morphea for about 22 years and I've just come to realize the cause of it was my diet. I went on a gluten free diet and my morphea has completed stopped after all these years!

Prior to being diagnosed I was already buying gluten free products now I'm going to change it all completely! Thanks for sharing!

Could you kindly fill me in with some more info I have generalized morphea. I will try the gluten free diet!!

Could you share some more info please. Would be greatly appreciated. Do you have scars? The ones that look like bruises.

hi em,

no i haven't even been back to the dr. yet. i missed the appt in feb because i was in the process of moving and didn't make it a priority to do anything other than what needed to be done at that time. my leg spot appears to have gotten lighter, but probably only because i've stopped going to the tanning bed. therefore, it's not as noticeable. i stopped using the cream because it didn't work. but the spot hasn't gotten bigger or anything since then. i do, however, sometimes get an ache there and it often itches, but that's all. my doc told me it could become systemic, and that scared me too, but i didn't ask too many questions then. i will eventually get around to getting the bloodwork done that was sposed to get done a while ago (blood sedimentary rate or something like that) and bite the bullet and go. until then.....thanx for the comment. at least i know i'm not alone in this :)

Have you had your biopsy yet? My name is emily and I have had morphea for 5 years already. I have it on my right abdomen. I have used dovonex which is a steroid cream for this amt of time twice daily. It has not helped. My morphea has spread upward a little bit but has short of tappered off now. I worry what will happen if I ever become pregnant - which I want to within the next two years. Has anyone ever been pregnant with morphea on their abdomen/stomach? I would love to hear someone's experience. The rheumatologist I seen said I would be fine--but I dont know if i necessarily believe him. Trixie- hopefully, you already know that morphea is created by an overabundance of collagen in the body. I hope that no one's would ever become systemic. That possibility does worry me sometimes. Hope yours has tappered off. One word of advice from my experience -- my derm injected my morphea with needles of steroid about 4 to 3 years back and I personally believe it made it worse--it became more discolored. I can't say if that will happen to you but if you do decide to go with that option maybe you should ask what the success rate is with it--something I wish I would have asked.

hi there Emily, My name is Crystal, and I 1st started noticing my 1st dark patch 3 years ago when I was pregnant with my daughter...(my 3rd child). I immediately went to my dr, and he said that he thought it was a form of eczema and gave me a steroid cream which actually made it worsee. needless to say I stopped using the cream...the dark spot turned from a tiny spot to about the size of a loonie. I went and seen a dermatologist where he told me it was morphea and that it would not harm the baby in any way. After I had my daughter, it continued growing, (i might add it is on my right side as well), and I had 4 spots the size of a loonie. I got pregnant again, and it actually made my morphea start growing rapidly. The dr said it was because of the change of hormones in my body. So I was devastated that I had these spots on my bosy that would never go away. I am now 7 months pregnant and at the beginning of my pregnancy I was scared that once again it would rapidly grow. But I have noticed the past month or so that it is considerably lightening up and disappearing! I couldnt be more happier! So as for you wanting to have children, I can only speak for myself when I say everything was perfectly fine and all of my babies are healthy ;) Hope you have the same luck as I have!