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Whitney

Need Input!

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Hi,

I've seen this forum for months, just now got the courage to join. I was diagnosed with morphea 2 years ago but have not had any results from any treatments so far. I'm tired so much of the time, I ache, itch, my skin is sore especially at the waist band of my pants. I don't know if this is the disease or my age or just in my mind, or all of the above. I have big spots all over my back, chest, neck,tops of my legs. and smaller ones around my eyes. I just try to grin and bear it. Please give me input as I have never been able to talk to other people who have this.

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Hello, Whitney and welcome to the ISN Sclero Forums. I am so sorry to hear about the diagnosis which brought you here, but at least you have found a great group for information and support. I don't have morphea but we have several other members who do. For a start, here is our medical page on Morphea:

 

What is Morphea?


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Welcome Whitney,

 

I am glad you found the courage to join our forum. It took me a long time before I finally joined a forum and I'm so glad I found this one. There are a few people here with morphea. I have systemic scleroderma and the information here has been so helpful. Every one here is so encouraging and supportive. Fatigue and pain is something we all have to deal with. Sometimes it's a matter of managing our time better and knowing when to take a break. Every day I have things to do since life does go on, so I prioritize (I usually write a list) and do what's most important. I hardly ever complete my list but at least I get some things accomplished. When I feel tired, I stop what I do and lay down. I don't want to overexert myself because then physically I'm extremely tired for days.

 

Are you taking any medications right now for the morphea, itchiness and pain? I hope you are feeling better.

 

Hugs,

Razz

 

:)


Live well, Laugh often, Love much

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Hi Whitney, I have morphea as well, diagnosed about a year ago, and have tried numerous treatments (steroid ointments, light therapy, steroid injections, immunosuppressant ointments), I just saw my dermatologist and he put me on methotrexate, which was his last resort. My dermatologist has told me several times that it is very very hard to get rid of. What treatments have you tried?

Danielle

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Whitney,

Welcome to the ISN Forums. I'm very glad that you finally got the courage to join us. That's a great step forward in many ways. I'm sorry to read that you have been dealing with morphea for two years without any real relief. Jefa has provided a great link with lots of information. I would encourage you to read it and to pay close attention to the information on Treatments for Morphea. You have a lot of options, so if one doesn't work for you, please work with your doctors to try something else.

 

I do not have morphea but many of our members do. I'm sure they will chime in with their experiences of what has worked for them.

 

Again welcome!


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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Hi Danielle,

 

It is nice to talk to some one who understands this. I started out on Plaquenil twice a day. No help. He also gave me a round of steroids and a shot . No help. I have a several different ointments. Also no help. I went to a specialist at UCLA Medical Center who recommended the treatment you are on but my doctor doesn't want to use that yet. He has me on celcept twice a day and hydrocortisone cream. The cream helps with the itching some. I did run into a lady at my work who had Scleroderma and she told me the best she had felt was when her doctor put her on Thalidamide. I didn't know they used that for anything anymore. My doctor isn't ready to try that yet.

 

I have a million questions but I need to feel a little more at ease using this forum. This is the first time I have ever done this. Please let me know how your treatment works.

 

Whitney

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Welcome Whitney ~

I don't have Morphea, and I'm very sorry that you are dealing with this, BUT I'm so very glad you got the courage to join us here. I'm sure it won't take you long to realize that it was probably the BEST thing you could have done for yourself. Lots of wonderful, supportive people here to help you learn about this terrible disease. We all suffer in different ways, but we all feel the comfort of knowing others here care.

Stick around and ask as many questions as you like.

Much love,

Nina (DE)

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Hi Razz,

 

Thank you for the welcome. I am on Celcept and Hydrocortozone cream right now. My doctor thinks the celcept might work without a lot of side effects because it also suppresses the imume system. After two months I see no difference. I have to go back to see him this month. Every time I think no more spots will come out, Surprise! Some more pop up. They are growing in places I don't even like to think about. The crazy thing is, if one pops up on one side of my body it seems that most of the time another pops up in almost the same place on the other side. Maybe someone has heard of this. I am not sure if I should push my doctor to try something stronger.

 

You are right life goes on and I try not to let this slow me down. Mostly it doesn't. I would like to ask you. When you get tired do you feel like someone flips a switch all of a sudden? Even if you get eight hours of sleep? I get enough sleep and I feel fine and then it will hit me. I am not sure if this goes along with Morphea. I didn't have this before I had this disease. I don't know what to blame on this or not really enough sleep.

 

Thanks,

Whitney

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Whitney, I am sorry to hear that you have morphea. There are many members on this forum with morphea. They must not be around this week. I sure hope they answer or give you ideas that may help. I would like to welcome you to our ISN forums. It is a great site with many wonderful people who are willing to telling anything, if it might help out another person. Many of us have the fatigue that you are getting. Yes! It is like flipping a switch. You usually can't fight it for long. When you body quits you have to lay down and recouperate. I lay down and within seconds I am sound asleep. I can awaken an hour later and do a few things and it can hit me again. Sometimes several times in a day. I sure am glad the fatigue comes and goes and doesn't cling with us along with our diseases. I hope you get some helpful information on morphea from others here. Stick around and in no time at all you will feel comfortable with all of us. We are (all) a great bunch of wonderful human beings. Find something from this day that makes you happy.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Whitney,

As the others have said, I too, am glad you got the courage to post, its a great support system. My dermatologist has been trying several different treatments for a year now, and nothing has really worked. I know they always seem to start "small" with treatments, and work up to the more aggressive treatments. My dermatologist was really holding off on the methotrexate, he didn't want to put me on it until he tried everything else first.

I know how you feel about the new spots, mine seemed to be linked with stress (I think), and when I get stressed out, I'm very nervous about getting the new spots. It's hard to see a new one, because they are so hard to treat. Mine are all on one side of my body, I've been meaning to ask my dermatologist about that.

If you don't feel comfortable using the forum quite just yet, feel free to send me a private message. Just click the green button in the bottom left corner of this post. :)

 

Danielle

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Whitney,

 

I also take Cellcept and in my case it keeps the scleroderma from flaring up or progressing. I started with 1000 mg once a day and it wasn't working too well. My rheumatologist increased it to 1000 2x day and I've noticed an improvement. I hope your rheumatologist finds something that works for your morphea. You should express your concerns to your doctor and see what he recommends.

 

When I wake up in the morning I never know what my energy level is going to be for the day. I know what you mean how all of a sudden the fatigue hits you like someone flips a switch. When I'm at home I have better control at pacing myself. When I'm visiting at someone's home we get caught up in the conversations and time flies and before I know it I'm exhausted when I get home. Usually I'll say I have to leave and the response is why so soon? People don't understand how it feels when we start loosing our energy and start feeling tired. I can always ask if I can lay down, but I usually prefer to just go home especially if I'm really tired. Low energy and stamina is hard to get used to but planning always helps.

 

Hugs,

Razz


Live well, Laugh often, Love much

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I have to say, I'm a bit intrigued.

 

I believe my localized scleroderma (including morphea) has reactivated, and I'm also having just severe fatigue issues.

 

But very interesting you get almost "mirrored" spots. I've never had one pop up on the left side of my body, it only pops up on the right.

 

Very strange, the similarities and differences there.

 

Good luck with everything. I'm glad you're finding some relief. I'm still waiting to get through doctors to try to get some action done. Gotta love people's busy schedules.

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Hello Whitney and welcome to the forums. I have diffuse sclero and also have morphea. I have a lot of morphea plaques on my body and they are starting to appear more frequently again. I get them on my upper arms, above my knees and on my torso with quite a few on and around breast area (both sides). I am beginning to see them appear around my neck and upper chest. One has been coming in for about a week and has itched something terrible.

 

I am on 20mg of methotrexate and 400 mg of plaquenil. I tried several topical creams at first, but more so for the itching and tightness of my skin. None of it helped. The metho or plaquenil or both eliminated the itching altogether and I did see a decline of the plaques but they are starting up again. I have an appointment with my dermatologist in November to see what else can be done. I'll keep you posted on her thoughts.


I may have Scleroderma, but Scleroderma doesn't have me!

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Very interesting, mine is all on the left side of my body. I tried several topical creams as well, as well as light therapy, and steroid injections(about 25 at a time). I don't have any itching really, just a bit of aching. I do have a bit of tightness in some spots. Everyone's morphea seems to vary so much!

My current treatment is Protopic ointment, and 5mg per week of MTX, as I just started it, I have one more week of 5mg, and then will move up to 15mg of MTX. Just hoping my body will tolerate it!

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