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Plaque Morphea


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#1 LisaB

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Posted 19 May 2015 - 10:18 PM

Hi I've just joined here.  My 14 year old daughter was diagnosed with plaque morphea back in 2012, it started in 2008 with a pinkish patch on her back whilst we were on holiday then turned silvery/hard etc and all doctors kept telling me it was sunburn so I persisted in going back again and again and finally sent to a dermatologist who diagnosed plaque morphea and she was given steroid creams which didn't do much apart from relieve itching.  It has now nearly completely turned brown and is approx. 9cm long and 4/5cm high, this doesn't bother her too much as its on her back and easily covered in clothes.

 

Back in Sept/Oct 2014 she noticed a small patch appearing just above her knee and we both knew for sure that it was another patch coming up so again went to doctors who said is was exzema but we were convinced so I emailed the consultant we saw last time and he said it looked like morphea.

 

We went for a hospital appointment yesterday and saw a very good doctor who is doing a lot of research into morphea at the moment and he has given her a stronger steroid cream to hopefully stop this patch getting worse and we have an appointment in another 4 months time to see him again.

 

He also mentioned at the time about maybe going onto methotrexate if this doesn't work and I know there are side affects with this drug and I was wondering if anyone can give me their experiences with this so that we can do a bit of a think before we go back.

 

She also seems to have other symptoms with morphea like aching joints (hips/knees), fatigue, stomach pains but these aren't anywhere near her patches so they're not looking into those at the moment.



#2 Amanda Thorpe

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Posted 20 May 2015 - 01:46 AM

Hello LisaB
 
Welcome! I am sorry your daughter has plaque morphea, a type of localised scleroderma but you're in the right place for information about scleroderma from the very people living with it, like me! As it happens, I have both diffuse systemic scleroderma, morphea  and bullous morphea which is a rare, blistering type of the disease.
 
Firstly, morphea can begin to fade within 3 to 5 years, even without treatment and plaque morphea only affects the skin, not the underlying tissue or joints. Currently UVA-1 Phototherapy is recommended as the first line treatment and has good results however there are only about 3 centres in the UK that offer it.
 
Methotrexate is a very toxic drug with many side effects, as you know, and isn't actually recommended for plaque morphea unless prescribed and monitored by a scleroderma expert, see list A & list B especially one that treats juvenile scleroderma. No disrespect to your GP or other doctor(s) treating your daughter but scleroderma is extremely complex, even types that  just affect the skin and methotrexate is a serious drug so whether to use it or not is best determined by someone who knows the disease. We always recommend treatment by a scleroderma expert, as in someone on the list NOT a doctor who thinks they're an expert!
 
I found your last paragraph bizarre, that other symptoms aren't being considered because they're nowhere near the patches? Say what? I am assuming this idea came from your daughter's medical team but here's the thing:

 

"A 2003 large multinational study found that 25% of people with localized scleroderma had at least one other non cutaneous (non skin) symptoms, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non cutaneous symptoms and none of the people in the study developed systemic scleroderma during follow up."

 

I can't say for sure, but I can say it's possible that the other symptoms your daughter is having are actually caused by the scleroderma...irrespective of where the plaques are! That localised scleroderma can cause symptoms usually associated with the systemic form of the disease is not widely known and I certainly wouldn't expect your daughter's GP to know this BUT I would a scleroderma expert too!

 

I hope that this information is helpful to you and your daughter. Scleroderma is a difficult disease to have for many reasons like its unpredictability and its rarity but there are things you can do like getting informed, having the right medical team and speaking to people living with the disease. It's marvellous to see all that you're trying to do for your daughter, I hope she fares well and please keep posting.

 

Take care.


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#3 Joelf

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Posted 20 May 2015 - 09:02 AM

Hi LisaB,

 

Welcome to these forums!

 

I'm sorry to hear that your daughter has been diagnosed with Morphea Scleroderma and has also been experiencing other worrying symptoms.

 

I'm with Amanda; the fact that her other symptoms are "nowhere near the Morphea patches??" doesn't really seem to have any relevance and I must admit I've never heard that one before! I would concur with Amanda that you do really need to consult a Scleroderma expert, as this is such a complex disease, with so many little idiosyncrasies.  The Royal Free Hospital is a centre of excellence for treating Scleroderma (as is often the case with NHS hospitals, their admin leaves a lot to be desired, but a referral to them would mean that your daughter would be getting expert, specialised treatment for the disease.)

 

I've never taken Methotrexate, so can't advise you from my own experience, but all immune suppressant drugs should be treated with respect (I take Azathioprine, another immunosuppressant.) Amanda has mentioned the UVA-1 Phototherapy, which I understand has produced some good results.

 

Please do keep posting and let us know how your daughter is faring and how the morphea is progressing.

 

Kind regards,


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#4 Amanda Thorpe

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Posted 08 June 2015 - 08:34 AM

Hello LisaB

 

I was wondering if you'd had anymore contact with the consultant and how your daughter was faring?

 

Hope all is as well as it can be.

 

Take care.


Amanda Thorpe
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