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Advice re Linear Morphea


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#1 AngelaN

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Posted 16 October 2013 - 06:42 AM

Hello

 

I have been diagnosed after a biopsy with Linear Morphea. It started in my upper right thigh around ten years ago when I was about 35.  I had light therapy and dovonex (calcipotriol hydrate) creams and was subsequently told that I was lucky as I was cured.

 

The illness has recently returned below my knee at the front and side of my leg and oddly has been significantly more painful, I.e. burning and aching? I also have a slight indent on my calf muscle which I have been told will be a permanent scar. The morphea above my knee did not affect me at all so I was unconcerned about it.

 

 The pain has stopped in the main and I have been to see Dr Sheehan at Chapel Allerton Leeds who has recommended dovonex ointment and light therapy treatment. 

 

 I do also have a faint patch on my hip which is barely noticeable and again has never bothered me at all.  I am very worried about this new bout, below my knee and having read lots of stories on the internet and am trying to put it into context as I am not sure if I am worrying too much seeing as there is nearly a ten year gap between the disease burning out and then restarting. Does anyone have any similar experiences?  The scarring etc doesn't really bother too much its more not really understanding how serious this is and what the long term prognosis is. Having read other peoples experiences there does seem to be some improvement with dovonex ointment and light therapy. 

 

 

 

Angela



#2 Joelf

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Posted 16 October 2013 - 01:31 PM

Hi Angela,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with Linear Scleroderma which has recently flared up again and I can understand how anxious you're feeling.  Regarding your treatment with light therapy, we have some information about Phototherapy, UVA, PUVA which is now the recommended first line treatment for Morphea. I've also found an earlier thread on Linear Morphea, which I hope you'll find helpful and encouraging. We also have three of Amanda's informative videos on Localised Scleroderma on our ISN Video page.

 

Thankfully, I don't suffer with Linear/ Morphea myself, so I'm unable to give you any first hand advice, but we do have other members who are affected by this condition and I'm sure they'll be along to help and advise you. I would, however, advise against reading too many scary stories on the internet (done that and foolishly scared myself witless! ;))

 

Now that you've found our forums and joined our community, I hope that you'll continue posting and let us know how you're faring.

 

Kind regards,


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#3 Amanda Thorpe

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Posted 18 October 2013 - 02:51 PM

Hello Angela

 

Welcome to the forums! I had never heard of linear morphea as generally they are two different types of localised scleroderma, or so I understand as a nonmedical layperson and as per our linear resources and our morphea resources. Unless you mean you have both although your description reads as morphea?

 

I have both systemic and localised scleroderma being morphea and bullous morphea which is the blistering form of the disease. I have morphea plaques all over my thighs and the bullous form on my calves. I have never done anything to treat them as in comparison with the systemic they paled into insignificance. However if I only had morphea I would be devastated with the changes it's made to my legs which mean they can never be seen in public again! Systemic scleroderma deformed my legs as well so morphea was just the icing on the cake!

 

You can see photos of my morphea plaques in our photo gallery, do your plaques look like this?

 

Take care and keep posting.


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#4 AngelaN

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Posted 20 October 2013 - 11:45 AM

Hello

 

Thank you for your replies!  I am sorry you have so many different forms, Amanda you sound a very brave lady :)

 

It is nice to be able to talk to other people who understand what you have.   I find it really difficult to explain as most people don't understand the disease! Although I guess so far I am quite lucky in that I only hopefully have morphea. 

 

I am not sure what I have still!  Last time I had it I was definitely told it was linear morphea this time it just says morphea on my prescription! I will have to ask more questions next time I go although I always think of questions after the appointment!

 

I am hoping it does not spread anymore, I am certain stress has caused the flare up again as I had an extremely stressful 12 months which seems to be the case for other people on the forum.

 

I will keep posting with any updates I get, and thanks again for listening, it does help.

 

Angela x



#5 Joelf

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Posted 20 October 2013 - 02:14 PM

Hi Angela,

 

Stress can be considered a contributing factor to autoimmune diseases, so it is possible that this did exacerbate your recent flare up.

 

It's a good idea to write down a list of any questions you'd like to ask your rheumatologist before your appointment, as it's so easy to forget to mention any queries at the time. It can be useful to take along a friend or family member to your appointment, as an extra pair of ears as well!

 

Kind regards,


Jo Frowde
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#6 Amanda Thorpe

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Posted 20 October 2013 - 03:46 PM

Hello Angela

 

Have a look at our emotional adjustment page, Jo is right about avoiding stress. It's no friend of ours don't make it yours!

 

Take care and keep posting.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
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International Scleroderma Network (ISN)