Morphea (localised scleroderma)

My 25 year old daughter was diagnosed last year with Morphea (localised scleroderma).

The problem became noticeable when the skin down her right leg looked paler, but also the leg was stiffening and painful and still is giving her pain, at that time she was mis-diagnosed with Vitiligo due to the skin colour tone changing.

I note when looking on various websites that there seems to be no known causes, some sites suggest that it could be hereditary !

If this is the case, does anybody know if anyone has done any work with DNA sampling to ascertain if the disease is located within the genetic code of either parent ? If not why has this not been tried to help eliminate a possible cause. If there is information out there can somebody please steer me to the information site.

As an aside, I note that in the news last week Stem-Cell research is now being undertaken for sufferers of M.S. with fair results - can this also apply to other diseases such as Morphea, again if anybody knows anything please drop me a message - thank you in anticipation.

My daughter is currently taking CellCept - Mycophalate Mofetil x 3 - twice a day. Plus Methotrexate x 7 -once a week. Plus Baclofen for cramps x 2 - twice a day the cramps are painful at night and gives her poor sleep patterns. She also takes folic acid and Vitamin D tablets - any feedback to this dosage and type and its overall usage would be helpful - thanks.

Kind regards, Bob Atkinson.

11 Replies

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  • Hi Bob

    My daughter is 14 and has had linear scleroderma since 6. For her, she has had periods of flare ups and a couple of years in remission. She has been fortunate that she had a quick diagnosis and prompt treatment which has helped prevent significant problems with joints. The problem with researching the causes is the condition is rare so there will be limited data. In our family there is a history of other autoimmune illnesses (my father in law rheumatoid arthritis, my mother sarcoidosis and my brother psoriasis) . I believe the Royal free are very up on research but I think will probably concentrate more on systemic sclerosis. The RSA, scleroderma society are the 2 main sources of info in the country. As linear scleroderma tends to be seen more in children I believe Liverpool/Manchester tend to be leading on researching treatments.

    My daughter is also on cellcept but she is currently having some steroid infusions (can be done in a variety of ways, in the past she has had 3 in 3 days followed by 1 a month for 2 further months and currently having 1per month for 3 months) at the moment to try and calm the activity and reduce the inflammation. Has your daughter had this, it should improve the cramps and help with the stiffening. That is the normal protocol with paediatrics where linear scleroderma is more common. I would ask her rheumatology team about this if she hasn't had any, some people have oral steroids instead but because as a child she is still growing they prefer to hit it hard. She also has Dovonex and tacrolimus cream prescribed by her dermatologist. The immune suppressants take about 3-6 months to start kicking in and softening the skin - my daughter is starting to show some improvement just this last week 3 months after starting treatment.

    I believe stem cell treatment would be more for systemic sclerosis and is still in early stages of being used (but correct me if I'm wrong). I've never seen morphea or linear being treated with it.

    Hope that helps I can only go with what I have experience of which is in children.

  • Hi,

    Many thanks for your response to my email relating to my daughter's Morphea.

    So sorry to hear of your young daughter contracting the disease at such an early age. From what I see and read Stem-Cell treatment seems to be the way forward. Amazing how medical know-how and geneticists are getting to grip with some of these what used to be classed as incurable diseases and long may it happen.

    Regarding your question as to steroid infusions, my daughter hasn't mentioned this, so I presume she hasn't. Also your point about Stem-Cell treatment for morphea, if you read a later response sent to me from Helen58 she points out that she has had Stem-Cell treatment and that she is greatly improved which is encouraging so please read her letter.

    I will be forwarding your response to my daughter so if she has any questions I will forward them to you. I wish you and your daughter all the very best for the future and once again thank you for your input.

    Kind regards, Bob.

  • My son was diagnosed with linear morphoea when he was 2. He is on methotrexate 10mg once a week and folic acid and has received both an infusion and oral steroids in the 7 months since he has been diagnosed. We are going to GOSH to look at a clinical trial of using his own fat cells to inject into the areas in the hope the stem cells within reset the affected areas.

    We have no family history of any auto immune diseases, it is a very rare condition and there does not appear to be much out there on its cause, just treatment.

    Hope this helps, good luck.

  • Hi,

    Many thanks for your response to my email relating to my daughter's Morphea.

    So sorry to hear of your young son contracting the disease at such an early age. From what I see and read Stem-Cell treatment seems to be the way forward. Amazing how medical know-how and geneticists are getting to grip with some of these what used to be classed as incurable diseases and long may it happen.

    I will be forwarding your response to my daughter so if she has any questions I will forward them to you. I wish you and your son all the very best for the future and once again thank you.

    Kind regards, Bob.

  • Hi Shadow15,

    Further to my last email, my daughter said would be interested in how your son gets on with the clinical trials of using his own fat cells to reset the stem-cells within his affected areas. I note, that when reading the various journals and forums about this disease, medication type and dosage seems to vary with the persons age and situation so I would be very interested in any future feedback you may have - thank you. Kind regards, Bob.

  • Hi Bob.

    I too suffer from Morphea in all 4 limbs from the knees and elbows down. It took about 6 months to get a diagnosis, which is not unusual, and your description of cramp-like pain and limb stiffness is all too familiar. I had a skin biopsy to confirm the diagnosis and the rheumatologist referred me on to a dermatologist who put me on a high initial dose of steroids ( prednisolone) and a steroid cream and gradually tapered these down over a 4 month period. Since then, the condition has stabilised and there has been some improvement in flexibility. What works for me is twice daily moisturising, high strength cod liver oil + Vitamin D capsules (which I get from Aldi ), a daily 2-3 mile cycle ride (jogging is not an option) and Tai-Chi twice a week. I follow this regime religiously and it seems to work.

    On the question of genetics, I don't have any family history of auto-immune diseases as far as I know, although the dermatologist was interested to know if I had worked in the plastics industry (I haven't), as they see Morphea from people with long term exposure to certain chemicals used, I believe, in the manufacture of PVC.

    Like you, I saw the programme on using stem cells as a means of improving MS and I know they are doing quite a lot of work in the USA on stem cell transpants for Scleroderma. However, as one of your other replies mentioned, I think this is directed mainly at Systemic Scleroderma rather than Morphea. If you look on the US Scleroderma Foundation website, there is some information on the research they are carrying out at the Nothwestern University Hospital in Chicago - Dr. Richard Burt seems to be the person leading the programme. There is also a You Tube video - Adult Stem Cell Transplant saves Tony Underhill from Scleroderma, which you might want to watch.

    Hope this heps a little.

    Kind regards

    Edwardian

  • Hi Edwardian,

    Many thanks for your response to my email relating to my daughter's Morphea.

    So sorry to hear of your plight which seems to be quadruple that of my daughter's. Your point regarding Stem-Cell treatment for morphea, if you read a later response sent to me from Helen58, she points out that she has had Stem-Cell treatment and that she is greatly improved which is encouraging so please read her letter. From what I see and read Stem-Cell treatment seems to be the way forward. Amazing how medical know-how and geneticists are getting to grip with some of these what used to be classed as incurable diseases and long may it happen.

    I have forwarded your response to my daughter so if she has any questions I will forward them to you for comment if that's ok with you? She did email me to say that she finds it impossible to bike-ride as it gives her calf and foot cramps, also Pilates and balancing gives foot cramps, so exercising currently seems to be off the agenda! Thanks for the YouTube link to Tony Underhill a very interesting watch.

    In the meantime, I wish you all the very best for the future and once again thank you for your input.

    Kind regards, Bob.

  • Hi again Bob. Thanks for the information. I'd be happy to answer any questions your daughter has. I'm sorry that exercise is difficult for her as I believe it has made a real difference in my case, but I can sympathise with the calf and foot cramps - I used to get them too, as well as along the sides of my hands and up the inside of my forerms. Has she tried heat-packs at all - these really helped me as my Morphea seems to get much worse in cold weather. Thank goodness for a mild winter !

    Kind regards

    Edwardian

  • Hi, I developed severe Morphea very quickly, within a few months I was covered. My sides, chest, stomach, back and legs had huge plaques. I also had a number of smaller patches here and there. My connective tissue was so tight that I could barely move. I was started on Methotrexate which did very little as my condition was quite severe. I had a 6 month course of Cyclophosphamide and had some improvement. My dermatologist applied for funding for me to have Photopheresis and the results have been amazing with hardly any side effects. On 2 consecutive days every fortnight I am connected to a machine similar to dialysis, approx. 1.5lts of blood is taken out, the white cells are separated, medicated, zapped with UV and put back in. This treatment (stem cell) is used for transplants where host tissue is being rejected. I am very lucky to get this treatment, I have been having it for a year and am greatly improved. I understand from the medical staff that many conditions will be treated this way in the future. I still have Sjorgrens and associated problems but only have praise for all my different 'Ologists'. As for genetics my mother had Lupus and Sjogrens in later life (70) but in a much milder form than I have. Mine started in my early 50s but I didn't realise till the Morphea started. I will never be cured but my quality of life is so much better now. Please feel free to ask any questions.

    Helen

  • Hi Helen,

    Many thanks for your response to my email relating to my daughter's Morphea.

    Sounds like you went through a very bad experience and I am happy to hear that your quality of life is now improving. Stem-Cell treatment seems to be the way forward. Amazing how medical know-how and geneticists are getting to grip with some of these what used to be classed as incurable diseases - long may it happen.

    I will be forwarding your response to my daughter so if she has any questions I will forward them to you, once again thank you.

    Kind regards, Bob.

  • Hi, I developed severe Morphea very quickly, within a few months I was covered. My sides, chest, stomach, back and legs had huge plaques. I also had a number of smaller patches here and there. My connective tissue was so tight that I could barely move. I was started on Methotrexate which did very little as my condition was quite severe. I had a 6 month course of Cyclophosphamide and had some improvement. My dermatologist applied for funding for me to have Photopheresis and the results have been amazing with hardly any side effects. On 2 consecutive days every fortnight I am connected to a machine similar to dialysis, approx. 1.5lts of blood is taken out, the white cells are separated, medicated, zapped with UV and put back in. This treatment (stem cell) is used for transplants where host tissue is being rejected. I am very lucky to get this treatment, I have been having it for a year and am greatly improved. I understand from the medical staff that many conditions will be treated this way in the future. I still have Sjorgrens and associated problems but only have praise for all my different 'Ologists'. As for genetics my mother had Lupus and Sjogrens in later life (70) but in a much milder form than I have. Mine started in my early 50s but I didn't realise till the Morphea started. I will never be cured but my quality of life is so much better now. Please feel free to ask any questions.

    Helen

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    Hi Helen,

    Many thanks for your response to my email relating to my daughter's Morphea.

    Sounds like you went through a very bad experience and I am happy to hear that your quality of life is now improving. Stem-Cell treatment seems to be the way forward. Amazing how medical know-how and geneticists are getting to grip with some of these what used to be classed as incurable diseases - long may it happen.

    I will be forwarding your response to my daughter so if she has any questions I will forward them to you, once again thank you.

    Kind regards, Bob.

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