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generalized morphea

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#1 lexidreamer

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Posted 27 January 2013 - 06:39 PM

Hi I'm Alex and I have had generalised morphea for about 8 years now.

It covers all of my body except my face, I must have over 30 lesions but they join together so most is a darker colour now. Just wondering about digital ulcers? I have been diagnosed with blistering eczema but I'm wondering if they are digital ulcers? I get hard skin on my fingertips, then a thin layer of skin completely peels off and leaves tender, shiny new skin. I also get clusters or sometimes one or two tiny blisters on my fingers, that are sore and itchy! Then they dry out and create small pits in my fingertips that are still slightly itchy but really sore. Sometimes they get infected because of the tablets I'm on. Any help is much appreciated!

Thanks
Alex



#2 Shelley Ensz

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Posted 28 January 2013 - 01:49 PM

Hi Alex,

Welcome to Sclero Forums. I'm sorry you have generalized morphea. You may want to look up morphea treatment options for it as there are more treatments available now than there used to be, including UVA1 Phototherapy which they are now recommending as first line of treatment for morphea.

It is always good to question things, especially when you have any doubts. As it happens, there is a distinct difference between blistering eczema and digital ulcers. With blistering eczema, there is fresh new skin underneath, but with digital ulcers, there is an open pit of a wound, which is typically very painful and the ulcers can last for weeks and often months before healing.

I hope you find that info helpful and that it puts your mind to rest. If you have any doubts, of course, you should see your primary care doctor or dermatologist about it.
Warm Hugs,

Shelley Ensz
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#3 lexidreamer

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Posted 28 January 2013 - 02:15 PM

Thanks for the info,
It's like a pit there is no new skin underneath, then it usually creates some sort of healing layer over it and drys out.
Anyway at the minute my morphea is rife has been for several years now nothing seems to stop it, originally steroid IVs and MMF worked but for the past two years nothing seems to work. I have been on:
Steroid IV (prednisolone)
Depomedrone
MMF
Methotrexate (tablets and Injection)
Etanercept (injection)
Hydroxychloroquin
PUVA
And am currently on Cyclosporine and vitamin D tablets
Cyclophosphamide has been discussed if these don't work either but apparently it will make me really sick. Has anyone had any experience with this drug with scleroderma?
UVA1 was discussed Shelley but the only hospital near me that does this therepy is an hour away in the car and I don't drive :-) so getting there 3 times a week would be a pain,
Thanks for your reply
Alex

#4 Joelf

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Posted 29 January 2013 - 03:33 PM

Hi Alex,

Welcome to these forums!

I'm sorry that you've been suffering with generalised morphea and painful skin on your fingers.

I'm able to advise you about Cyclophosphamide from personal experience as I had to undergo treatment where I received 6 IV infusions of the drug over a period of six months. In order to prevent the sickness of which you mention, I was given an anti sickness drug infusion and also an infusion to protect my bladder, as one of the least pleasant side effects of Cyclophosphamide is that it can affect and irritate the bladder very badly. It's absolutely imperative that you drink copious amounts of water throughout and after the infusion to prevent this happening. I was also very worried about my hair falling out, as it's long and curly and I don't do hair loss; however, that fear was thankfully unfounded!

Kind regards,

Jo Frowde
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#5 lexidreamer

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Posted 29 January 2013 - 03:54 PM

Oh good, I was worried about hair loss too!! What effect did it have on your scleroderma?? Also was you able to work when you were having it? I don't know how sick it will make me. They also said it may make me infertile, I'm not bothered about that at the minute but I might be in the future.

Thanks for your knowledge.

Alex

#6 Joelf

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Posted 29 January 2013 - 11:34 PM

Hi Alex,

I was fortunate as I was diagnosed quite quickly with lung involvement and so I received the treatment whilst the fibrosis on my lungs was still at the inflammation stage and so consequently my treatment was very successful. However, I would emphasise that my lungs were in very good shape to start with (very fit and a non smoker all my life) and I was dealt with very promptly, so I received the maximum benefit from the treatment. Obviously different medications affect everyone differently and I'd be lying to you if I said it was a nice medication to have administered, but in my case the means justified the end!

I wasn't working at the time, so that wasn't really a problem, nor was being infertile, as I'm an old girl and way past the time when that would have mattered!! ;) :lol: Certainly, you would not want to be pregnant whilst having the drug, as it could damage an unborn child and it is a chemotherapy drug, although it's given in much lower doses for Scleroderma, which is probably why I didn't suffer any hair loss. I've included a link to our medical pages on Cyclophosphamide to give you some more information.

Kind regards,

Jo Frowde
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#7 lexidreamer

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Posted 30 January 2013 - 01:19 AM

Thank you Jo,
I may have a chat with my dermatologist when I next see him as apart from some restriction of movement in my hands, as far as I know I am very lucky and have no internal involvement.

I'm not sure if morphea can have internal involvement as different sites say different things. I know it can't turn into Ssc but can it have some internal involvement, and isn't that the same as SSc? It's all quite confusing. I have had morphea for 8 years and I still don't understand it :D haha.

I suppose maybe my plaques are so widespread that they are worried it may progress.
Thanks
Alex

#8 Joelf

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Posted 30 January 2013 - 01:54 PM

Hi Alex,

I've included a general link on our medical pages for you on Morphea; we also have another page Conditions associated with Morphea from which you will see that about 25% of patients develop symptoms outside of just skin involvement. I quote from that page:

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

It is possible, although rare, to have Morphea and Systemic Scleroderma, as Amanda can testify.

Kind regards,

Jo Frowde
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#9 lexidreamer

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Posted 30 January 2013 - 04:44 PM

Wow, I know I have gastrointestinal problems. They think I have slight reflux at the minute. I have also recently been diagnosed with OCD. But I didn't tell my dermatologist as I didn't think it was related, can it have effects that are mental illness? It's getting better but I didn't know it could cause other things like that.
Thanks
Alex

#10 Amanda Thorpe

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Posted 14 February 2013 - 08:52 AM

Hello Lexi

 

I have both systemic scleroderma and morphea with about 20 morphea plaques on my legs most of which appeared rapidly.

 

As Shelley has said UVA1 phototherapy is now the first line treatment for morphea so maybe travelling an hour away for it would be better than taking all the drugs you are at the moment, some of which are seriously toxic.

 

In order to be under the care of a scleroderma expert I travel 2 hours or more each way with a dodgy bladder which means that other than sips of water to take medication, I don't drink at all on the day of the appointment until I am back home usually some 8 hours later. I also vomit on the journey either there or back, sometimes both, since scleroderma I can't travel far without puking and always carry bags with me for the occasion.

 

Despite all the unpleasantness associated with the journey I think it's worth it to get the best treatment from the best doctors.

 

Take care.


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#11 Amanda Thorpe

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Posted 14 February 2013 - 04:08 PM

Hello Lexi

 

Are your blisters on your morphea patches? I ask because I have bullous morphea which basically means blistering morphea with the blisters on my morphea plaques and wondered if you were experiencing the same thing? I also have stasis eczema, if I don't elevate my legs the eczema suddenly flares and soaks my bandages and it only takes a couple of hours.

 

For me, some of the blisters from the bullous morphea on my right shin burst and ulcerated, now they are all closed but the blisters persist, pesky little buggers!

 

Take care.


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#12 lexidreamer

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Posted 20 February 2013 - 04:52 PM

Hi Amanda,


Thanks for the advice! It is only an hour there and an hour back in the car. Unfortunately I don't drive, when I go to clinic my Dad takes me. But if I go 3 times a week I can hardly expect him to miss or be late for work 3 days out of 5. So I would get the train which is 3 hours there and 3 hours back. And I have university 3 out of five which means I would struggle to make it in. It is a pain but I agree it sounds better than the drugs I'm taking. I will have to discuss this with my dermatologist. It's funny you should say about the travel sickness. I am awful with travel!! Same as you have mentioned with yourself I usually vomit either coming or going but didn't really associate it with the sclero. Maybe it is?


The blisters are on my fingertips and sometimes the tops of my toes. I did upload some photographs earlier in the thread. Or they are in the photo album on the site. They blister and itch like crazy. If there are a lot of them the fluid makes my finger feel numb. Then when they pop it's a clear sticky liquid and they heal and leave open like small craters in the skin and are very sore. They are only tiny about 1-2mm. I did research bullous morphea and I don't think it is that. It looks really painful!!


Take care,


Lexi



#13 Amanda Thorpe

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Posted 21 February 2013 - 03:12 PM

Hello Lexi

 

I agree, it does not sound like bullous morphea!

 

Since having scleroderma I have developed reflux and I think that's tied in with the travel sickness. I can't have anything tight around my ribcage, like a bra, because that makes me sick as well. During year two of my illness I had many a journey where I had to whip my bra off because of the sickness!

 

Take care.


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