Morphea and systemic scleroderma

My daughter was diagnosed with plaque morphea 6 years ago.

She has recently complained of painful wrists and ankles and says that she feels like there is a lump in her throat making swallowing difficult.

She is quite an anxious child so this could be anxiety related or is there a possibility this could be scleroderma related?


7 Replies

  • Hi, sorry to hear about your daughter. How old is she? Has she had treatment or been in remission at all? It is common with linear scleroderma to have joint pains. My daughter is 12 and has linear scleroderma and has had ankle pains in the affected side. She is on her 2nd round of methotrexate, luckily she has had prompt treatment and responded well both times so it has not been too debilitating for her. When we go to hospital, they always ask her about her swallowing, I think mainly because she has high ana and rheumatoid factor readings in her bloods plus on initial diagnosis had high muscle enzyme readings. . She developed a croaky voice following diagnosis but her swallowing has always been ok. I would mention at her next appointment about these concerns, if she hasn't got one for a while then contact your nurse specialist for advice. When my daughter looked like she was starting up again, I emailed them and they saw her within a couple of weeks. The reoccurrence coincided with onset of puberty. They have always said it would be extremely unlikely to become systemic and they also said once initial treatment finished it prob wouldn't reoccur but i think scleroderma has a mind of its own and i know of a few youngsters for whom reoccurrence has happened. they are now keeping an eye on her long term because of her blood work. If she is anxious it is best to get her checked over for both of your peace of mind. It is also worth having her thyroid levels checked. Good luck .

  • Hi, I have morphea / scleroderma and have difficulty swallowing as there is a tightening of the throat. My rheumy has organised a barium swallow test and I gather that this difficulty with swallowing is quite common in scleroderma patients. Helen

  • "People who develop localized scleroderma usually do not develop generalized scleroderma." ~ the quote was taken from every site with information about morphea, in all it's forms including plaque morphea AKA localized scleroderma... so I would think that your daughter should see her rheumatologist in order just to relax your mind (and hers as well), about what is going on now in her body. Autoimmune illness is difficult to diagnose and very difficult to live with, having been dx'd with SLE as a young adult and having it traced back to when I was 11 years old, I know very well the anxiety of being and feeling sick a lot! :( Not a pleasant life style and very anxiety provoking as well! As well scleroderma, like lupus, is very individual to the patient and can't be compared to other patients regarding symptomology and history. So to be sure of what is or isn't taking place at this time in your daughter's system, as suggested by both Helen and 'dramatic', I would see the specialist and get some peace of mind for both of you :) Better to go through the labs again and get checked over once again to be certain, than to be anxious and uncertain and have ongoing questions! Good luck to you both!

  • Thank you.

    The problem I have is that there is no specialist/ follow up appointments.

    After diagnosis when she was about 4, no one was concerned really. GP just said it's not scleroderma but plaque morphea and that it was nothing to worry about.

    She has one patch on her back. There is another coming below it but it has taken several years to develop.

    We did see a dermatologist after I pushed for it. But she too, was not really interested. And that was it.

    No bloods. Nothing.

    I know a lump in the throat feeling can be caused by anxiety. So is this just anxiety or perhaps anxiety caused by a real feeling?

    I just feel my gp will dismiss me. He was adamant that morphea did not develop into other forms of the disease.

    Can I ask, is your problem with swallowing always present? Or are there res when it is worse/better?

    Thank you again for taking the time to reply.

  • Because all patients differ, I do not believe that your family physician is correct in dismissing your daughter as he did. I was an ill child, at 11 years onward, and dismissed:( I knew I was sick and was finally referred to the Mayo Clinic because of the severity of renal issues, yet fear of giving a teen aged girl, a dx with *at the time* a prognosis of 5 years before becoming deathly ill, they sent home their findings with the dx as a 'watch & wait' and so I was not treated at all until I was desperately/deathly ill at ages - first of all, 21 and then again 28 - and it happened that I had a good rheumy in attendance who dx'd me 'again' with lupus, and it stuck this time and I've been treated properly since, *until the new age '60' dx. I received, adding 2 more autoimmune illnesses onto the lupus dx. making it MCTD ;)*.

    Having said all that, I would not hesitate to call a rheumy myself, going around the dismissive physician, and straight to the specialist's receptionist with your fears and concerns and then taking your daughter in without the 'OK' of your family doc. Sometimes you have to be the best advocate you can be and that can involve breaking a few 'rules', & so be it. If it were me, I'd find by reputation, either via an online forum or if possible by word of mouth, the best rheumy in the area, and call stat.

    Good luck with whatever you decide and especially good luck to your daughter!!

  • Hi, sorry to hear you have had no joy with your gp, is there another in the practice who you could see? From having contact with a few other families with the condition, we were very lucky to have a gp who picked up quickly and referred her for tests where as many others have been through what you have, dismissed initially and having delay in treatment. I would take her back and ask for a referral to a paediatrician - If you live near a major centre there should be specialist paediatric rheumatologist's and dermatologists who will be better placed to make the appropriate investigations. We are in the the York NHS trust where my daughter was seen 1st to have initial blood work done, then once results were back, she was referred to Leeds who have the paediatric rheumatologist's and she sees them jointly. In particular if she is having joint pain, there is more than enough justification for a referral for you peace of mind. Let us know how you get on x

  • "People with morphoea rarely develop systemic scleroderma. Antinuclear bodies that are normally found in the blood of people with systemic scleroderma are generally absent in people with morphoea or localised scleroderma." I'm quoting from the scleroderma society booklet as I'm not a medic in any way. So it's not unknown to have the 2 forms of disease, as your GP has decided, but it would be a rare occurrence in an already rare disease. Also, the antibodies do not always show up, so physical symptoms are of equal importance & need to be investigated, if only to put your mind at rest.

    Leeds is a good area for this problem. If you go to the scleroderma society website, click on Useful Links, then Find a Specialist ( & download the list, you may find there is a specialist in your area. If it was my child I would want swallowing problems to be investigated too. Does you your daughter have Raynaud's?

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