Posted 30 September 2008 - 07:51 PM
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.
Posted 30 September 2008 - 08:40 PM
What is Morphea?
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Posted 01 October 2008 - 05:09 AM
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.
Posted 01 October 2008 - 07:33 AM
Posted 01 October 2008 - 07:52 AM
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.
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Posted 01 October 2008 - 01:43 PM
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.
Posted 01 October 2008 - 02:33 PM
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.
Posted 01 October 2008 - 07:34 PM
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.
Posted 01 October 2008 - 07:39 PM
I appriceate your support. It is very kind of you to reply to me. I hope to hear form you in the future.
Posted 01 October 2008 - 11:26 PM
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Posted 02 October 2008 - 02:56 AM
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.
Posted 02 October 2008 - 04:20 AM
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.
Posted 02 October 2008 - 04:59 AM
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.
Posted 02 October 2008 - 10:51 AM
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.
Posted 02 October 2008 - 02:41 PM
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!
Posted 02 October 2008 - 04:42 PM
I just finished uva1 treatments which seemed to help a lot in stopping inflammation and progression. The spots got very dark which they are now fading some. Unfortunately, it didn't put it in total remission so my doctor has me on plaquenil at the present time. She said it takes a full 6 months to get going so I'm going to give it a good try. I get really exhausted some times, not always but by the end of the week I can't wait for the weekend to come so I can sleep in or rest in the middle of the day. I work full time and take care of my family and home. I'm a single mom. I also have it on my face, not bad but I know its there and my face is feeling tight.
I'm not sure what will be the next treatment for me if the plaquenil doesn't show progress, I'm thinking it may be methotrexate but not sure. Beedee will have to keep us updated on her progress. I am glad you found this board and I'm sure you will get some answers your looking for. If I can be any help just let me know.
Posted 03 October 2008 - 05:18 AM
I am a little late, but I wanted to welcome you to the Sclero Forums. I'm so glad you've joined us. You will find a wealth of information, support, and great friends here. I look forward to knowing you better.
Posted 04 October 2008 - 07:30 AM
I am on Celcept 500mg. 2x a day. I will keep that in mind. Maybe I can incourage my doctor to increase the dosage if this fails.
Also do you find you pick up more colds, flu ect. now that you are on immune suppressents? And that they seem to take a little longer to get over? This is another thing I think can just be from getting older but has not happen to me till I started on this type of drug, so I am really not sure.
Posted 04 October 2008 - 08:48 AM
I don't have morphea so I can't help with that either but I wanted to welcome you too. You have definitely come to the right place....ask all the questions you want...there seems to always be someone here that can help....as I'm sure you have already discovered.
Posted 05 October 2008 - 06:19 PM
That's a good question to ask whether I find myself catching colds or the flu. Even I wondered about that before taking this medication. Surprisingly, I haven't caught any colds or the flu nor have I become more susceptible to them. I usually get the flu vaccine as a preventive measure but last year I missed my shot and luckily didn't come down with anything. I do pay attention to whether someone is sick and avoid being around anyone I hear coughing or sneezing.
Hope you're feeling better soon!