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#1 MorphMummy

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Posted 29 October 2011 - 02:37 PM

Hi, I'm Sara...
I'm 35 and I was diagnosed a couple of years ago as having morphea. My symptoms are very mild compared to most other people on here, but thought I'd say hello anyway! :)
I started off with a "bruise" about the size of a 50p piece on my right calf - that never went away! This was when I was pregnant with my son who is now 7 1/2 and over the next few years it spread until it covered from my ankle all the way up to my calf (my doctor was less than interested and huffed and puffed... in the last couple of years it has spread more rapidly and now stretches all the way up to the middle of my buttock. :(
I am very lucky as I don't really suffer any other symptoms other that occasional itching and it's quite tight and thickened at the back of my ankle.
I also have telangectasia (face, neck, arms) and other various marks on my left leg which apparently aren't morphea and are unknown quantities
I am seeing my dermatologist on Tuesday as I am probably going on methotrexate as long as her senior agrees with the diagnosis etc!
Anyhow, if any of you have this type of morphea I'd love to hear from you :emoticons-thankyou:

#2 Joelf

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Posted 29 October 2011 - 03:21 PM

Hi Sara,

A warm welcome to these friendly and informative forums!

I'm sorry to hear that you have Morphea. I've included a link to Morphea Treatments which includes information about Methotrexate and I've also included a link regarding Telangiectasia which I hope you'll find helpful.

We do recommend that you consult a Scleroderma Specialist as unfortunately many rheumatologists do not have the knowledge and expertise to deal with this unusual and complex disease.

Thankfully, I don't have Morphea, so can't advise you from my own experience, but we do have other members who do suffer with it and I'm sure they'll be along to give you some more first hand information.

I'm very pleased you've joined our community and please do post again and let us know how you get on with your dermatologist's appointment on Tuesday.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#3 Amanda Thorpe

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Posted 29 October 2011 - 04:44 PM

Hi Sara

Welcome to the forums! As I understand it methotrexate is a standard treatment for morphea. I have morphea and systemic scleroderma, for a few years I also had bullous morphea, a blistering for of morphea.

Morphea can still be difficult to deal with even thought it's not systemic so you want to get good care, do let us know what happens on Tuesday.

Take care.
Amanda Thorpe
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#4 MorphMummy

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Posted 01 November 2011 - 04:09 PM

Thanks for the welcome...

Well, the appointment was "interesting" I went through the methotrexate procedures with the specialist nurse ( who was lovely :) ) then had to see my dermatologist and her senior to get the final authorisation for treatment... well, he isn't so sure it is morphea!
Apparantly the first biopsy I had at least 4 years ago was "inconclusive" and the 2nd one was a completely different skin patch which has different presentation anyway! He now wants me to have 2 further biopsies done :crying: one around the original flare up years ago and one at the most recently affected area, so unfortunately that will be calf and mid-buttock on the same leg!
If the biopsies come back showing definitive "proof" that it is morphea then I go ahead with the methotrexate treatment. If they are inconclusive they will be sent to London for more analysis. In this case I will not start the MTX as he feels it would be inappropriate treatment.
The other thought he had about my "condition" was that it could be another form of telangiectasia... one which my consultant appeared not to be aware of LOL!
I am a little disappointed as I hoped to start treatment and see if I can get the spread halted, but of course if the diagnosis was wrong all along then I hope there is something out there (and maybe a little less harsh) I can use to at least slow it down.

Anyhow thanks for your interest, I will let you know what undoubledly slow progress is made in future :emoticons-thankyou:
Sara

#5 Joelf

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Posted 01 November 2011 - 05:05 PM

Hi Sara,

Thanks for the update on your dermatology appointment.

Unfortunately Scleroderma can be a very frustrating disease to deal with as the diagnosis is by no means straightforward and many of our members have experienced similar problems to you. I was actually diagnosed relatively quickly but I understand the average time can be about 6 years! Still, it does sound as if your dermatologist is being very thorough with his biopsy testing which is a comfort, as you do want to ensure that you ultimately receive the best treatment.

I hope you are able to get a more definate diagnosis and treatment programme once you've had your biopsies done and got the results.

Kind regards,

Jo Frowde
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#6 Amanda Thorpe

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Posted 01 November 2011 - 06:22 PM

Hello Sara

Oh yeah, you want a definite answer from a biopsy, a biposy as in one not many! As painless as they are it creeped me out having one, the thing the doctor took the sample out with looked like a tiny apple corer. The fact that it then got infected didn't help.

I hope that you have the biopsy and results soon as the waiting is very difficult, in the end you don't care what "it" is as long as "it" is identified.

Take care.
Amanda Thorpe
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#7 rubydoo

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Posted 02 November 2011 - 03:40 PM

Hi everybody

The more I read about other people's experiences the more I realise how lucky I was to get diagnosed so quickly. In fact it was me that was very slow in seeking any medical opinion on my symptoms for years as I put all my symptoms down to getting older and not being as fit as I used to be. My symptoms started 6 and a half years ago with Raynauds, followed by skin tightness in my face and darkening of the skin, very slowly progressing for a few years. I had aches and pains in my joints and became very stiff, I was incredibly fatigued and getting increasingly breathless. It was only when I went to the dentist in August 2011 to have a tooth extracted and she found it almost impossible to get in my mouth to take the tooth out that she referred me to the local dental hospital. No sooner had I sat down in the consultant's room when she said I can tell you straight away that you have scleroderma just by looking at you. That was 2 years ago and within 2 months I had every test possible, given a definitive diagnosis of diffuse systemic sclerosis with interstitial lung disease and been started on mycophenolate, regular iloprost infusions and 6 months of chemotherapy.

So my advice to anybody now is to get any worries about or changes in their health checked out straight away because I am sure if I had done my lungs would not now have a TLCO of only 47%. The very quick response and intervention of all my health care professionals has made such a vast difference to my quality of life. I am truly grateful that I was given a diagnosis so quickly. I really hope you get some proper answers soon.

Take care, :)

#8 Joelf

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Posted 02 November 2011 - 04:04 PM

Hi Rubydoo,

You're absolutely right; it really is important to deal with any health worries and particularly Sclero symptoms sooner rather than later.

I put the significant improvement in my lung function down to being referred double quick to a top lung specialist hospital who dealt with me so fast my feet hardly touched the ground, for which I'm eternally grateful!

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#9 judyt

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Posted 02 November 2011 - 06:23 PM

Hello Rubydoo,

I want to welcome you on my first day as a Support Specialist on this Forum.

It is really gratifying to hear from somebody who has been recognised by another health professional and re-directed to the appropriate specialists.

These days I find myself giving 'the lecture' to anybody who shows the slightest interest in my condition. If they are a health professional all the better.

I know that when I end up in hospital and tell the doctors and nurses what my problem is, I can almost guarantee to have a stream of visitors from other areas who confess to being told to come and have a chat with me.

I can imagine the chat 'backstage' that there's a lady in cubicle 3 with SCLERODERMA! go and talk to her :rolleyes: .

Warm hugs from Downunder.

JudyT

#10 uknlv18

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Posted 09 November 2011 - 12:24 PM

I had Morphea for about 4 years, and it just recently got diagnosed as that when I was diagnosed with my Scleroderma. I had a biopsy done on the patch on my right wrist and under my arms. The patch on my wrist got cellulitis quite bad in it, so all I would say is make sure you take good care of the biopsy spot as we may be more susceptible to infection. Mine got infected after it seemed the patch was pretty much healed. Best of luck to you with your Morphea!

#11 louiserawlings01

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Posted 29 November 2011 - 05:26 PM

Hello Rubydoo,

I want to welcome you on my first day as a Support Specialist on this Forum.

It is really gratifying to hear from somebody who has been recognised by another health professional and re-directed to the appropriate specialists.

These days I find myself giving 'the lecture' to anybody who shows the slightest interest in my condition. If they are a health professional all the better.

I know that when I end up in hospital and tell the doctors and nurses what my problem is, I can almost guarantee to have a stream of visitors from other areas who confess to being told to come and have a chat with me.

I can imagine the chat 'backstage' that there's a lady in cubicle 3 with SCLERODERMA! go and talk to her :rolleyes: .

Warm hugs from Downunder.

JudyT

You are so right there, my daughter said to start with every time she went into hospital there was a steady flow of students all wanting to talk to her adn touch her as she was only 18 when first dignosed with scleroderma, up to that point most of them had never seen anyone with sclero let alone someone so young.

very freezing cold hugs from scotland lol

Louise





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