Linear / Morphea Scleroderman Questions?
Posted 23 July 2009 - 08:01 AM
Here's my situation. About a year ago I notice this small patch on my forehand and let it go without getting it checked out. As months progessed I started to notice the same spot but a bit larger and more so a line from my hand all the way up my back arm all the way to a portion of my back.
So I go to my general practioner and he referred me to a dermatologist who said that it looked like morphea scleroderma but then referred me to a rheumatologist. The rheumatologist ran test and the results were that I didn't have systemic scleroderma but I do have linear/morphea scleroderma. He prescribed me methotrexate and leucovorin (folinic acid). I was informed that the methotrexate was a chemotherapy but in a pill form.
I have had anxiety for the past six months and I have also been afraid to start the medication. I need some insight on this disease that I have. My hand and arm are tight and there's a lot of tension while trying to flex my hand and arm.
I want to know if there is anyone that is taking the methotrexate and it is working for them? Will my skin ever go back to its original cover? Will my hand/arm become deformed at some point? My rheumatologist also prescribed me folic acid which is suppose to offset the side effects. And he prescribed pain medication for the pain.
I've never been a person to take medication and this condition is scaring me. Why at age 30 am I now being diagnosed with this condition. As a black woman my arm looks as if I have a large birthmark but I would really like for my skin to clear up.
Can anyone give me insight? Other methods of therapy? Other medications?? Just please help me out with understanding what I have. Will I die with this condition? Will it get worse or better?
Posted 23 July 2009 - 08:42 AM
Welcome to the forum, you are in a great place to find out about all things scleroderma which is a multifaceted disease.
Basically there are two types of scleroderma localised and systemic, localised includes linear and morphea whereas systemic includes diffuse and limited also known as crest and scleroderma sine scleroderma. Localised scleroderma raely involves the internal organs where as systemic can.
Localised scleroderma rarely involves the internal organs and can have an excellent long term outook. Linear morphea, your diagnosis, can involve the deeper layers of the skin as well as the surface and can sometimes restrict the movement of joints that lie underneath. However as already said because you have a form of localised scleroderma your outlook can be excellent as it is unlikely the internal organs will be involved. Have a read of our page on localised scleroderma. It also includes links to personal stories from people living with localised scleroderma like yourself.
Methotrexate is one of the immunosupressant drugs commonly used in scleroderma and I take it myself. I have only recently started taking it but so far have had minimal side effects and feel better than I have in a long time. All drugs have side effects and whether someone takes a drug or not will often come down to which is worse, the side effects or the disease. For me it was a no brainer (I have diffuse) but you must decide for yourself. I know that there are many people on this site taking methotrexate so you will no doubt get many replies.
It's natural to be concerned when you are told you have a disease whatever it may be and natural to be concernder about taking medication. I look forward to hearing more from you and take care.
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Posted 23 July 2009 - 08:56 AM
Welcome the Forum. I'm sorry you needed to find us, but glad you did. We have a number of members with morphea and I'm sure they'll chime in with their experiences.
I don't have any personal experience of either morphea, or methotrexate as a treatment for it, but if you click on the underlined words, they'll take you to the information on our main site.
It's my understanding that morphea is like all other forms of scleroderma in that each case is unique and it is difficult to predict progression. In other words, you might never get any worse than you are. That's good news, isn't it?
Have you talked to your doctor about your fears and that you haven't taken the methotrexate? It might be worth your while - he may be able to prescribe something else or explain why he feels the methotrexate is warranted at this point. Did he suggest a follow-up appointment?
Most of us here feel it is important to see a rheumatologist who is familiar with scleroderma, rather than a general rheumatologist~
It's a frustrating disease and certainly scary, but stress is really bad for us. We have a great page on Anxiety and Attitude. I'm almost three years post-diagnosis with systemic sclerosis and I still go back and read the pages on coping and emotional adjustment from time to time.
I hope you post often and let us get to know you.
Warm hugs and best wishes,
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Posted 27 July 2009 - 04:54 AM
Welcome Darlin'! I'm so glad that you found us and joined. As you have already seen from the replies that you can get a lot of answers and great support here. Amanda and Jeannie have provided great links and information so I won't add any more links. I know how overwhelming it can be to try to learn about this disease.
I don't have morphea, but I did take Methotrexate (MTX) for systemic scleroderma for 3 years. My rheumatologist also prescribed folic acid to reduce the side effects. I was told to get a liver function test each month because of the possible effect of liver disease and MTX. I did as directed and had no problems with my liver. During the 3 years on MTX I didn't have any side effects or problems. Like you I started on the pills then eventually went to injections. I was instructed to take my weekly dose in one day, so I chose Sunday. I did divide the tablets up among my meals to lessen the effects it can have on the stomach. Some people get nauseous, but by dividing the dose throughout the day, it eliminated that side effect for me. The only noticeable side effect I did have with MTX was hair loss. My hair did thin out, but much of it has grown back since being off the medication.
Yes, MTX is considered a chemotherapy drug, but the dosage used for scleroderma is a very, very low dose comparatively. It's primary purpose is to suppress the immune system to slow the effects of scleroderma. Before I started taking it, the skin on my hands was started to thicken, but it didn't get very far and within months, it was back to normal. I'm not sure if that would be the case with morphea. You do need to be patient, because it will take several weeks if not months before you can tell if it's working for you.
Please find things to keep you busy that you enjoy so that your stress level is kept low. Stress is not good for us. Enjoy your family and friends as always, do things you love to do and laugh a lot. That's the best medicine. Come and visit us anytime for support and information. We're here for you Darlin!
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Posted 07 August 2009 - 04:21 AM
I have a localized scleroderma as well.
I understand your anxiety, but don't worry, this condition usually stabilize by itselt in a period of 5 to 10 years, maybe more for the linear form.
I have a morphea, it was active for about 3 years but now it has been stable for more than 2 years. Usually, once stabilized, the disease won't come back.
Of course, there is still a hyperpigmentation but the look is improving with time.
I don't know the MTX I think it is aimed to stop the progression.
You won't die of localized form, the internals organs are not involved.
Posted 08 August 2009 - 02:19 PM
I am sorry your condition leads you here, but am glad you found the forums. One of my first symptoms of scleroderma was darkening of the skin and what my sclero specialist calls morphea plaques ( I have these dark thick patches of skin all over). I have also been diagnosed with keloid sclero as I have this large keloid on my shoulder that itches like crazy and has grown back even after reducing in size after treatment.
I started methotrexate Jan 07 with 10mg and am now on 25mg. Since my increase from 20mg to25mg in December, I have seen an improvement in my skin where it's not as tight in most areas and is going back to normal in some. I am even going back to my pre-sclero skin color in some areas. I was told this would not happen so I'm pretty excited about it.
I have tolorated the methotrexate very well and am also taking folic acid. It did take some getting used to so I would recommend taking it on a Friday evening so that if you experience any side effects they occur over the weekend. The only side effect I had was that it would make me extra fatigued in the beginning. Also if your doctor has not done so already, ask him/her about checking your blood routinely to ensure you are tolerating the methotrexate. I have blood work done every 6 weeks.
Anxiety about the meds and disease is normal soplease try not to get too overwhelmed by this. Don't hesitate to inquire further or vent when you need to as everyone here truly understands through experience or sharing.
Posted 12 August 2009 - 05:47 AM
Once stabilized I think the skin is able to repair by itself a part of the damages.