sue2123

New member

7 posts in this topic

I have just been diagnosed with scleroderma and my next appointment with consultant is on 15th December. My main problem is very tight skin around middle, under arms and in groin area. I was prescribed Dovonex (calcipotriol) cream but this just caused my skin to flake off, leaving very sore, raw areas. Can anyone suggest a remedy?

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Hi Sue,

 

Welcome to these forums!

 

I'm very sorry to hear that you've just been diagnosed with Scleroderma and that you're suffering with painful areas of tight skin and I've included a link to Skin fibrosis to give you some more information.

 

I have no experience of Dovonex (calcipoltriol) but would suggest that you speak to your consultant about the unpleasant side effects that you're experiencing at your next appointment. We do recommend that if possible you consult a Scleroderma specialist as they are really the best rheumatologists to advise you about this complex and unusual disease.

 

I'm very pleased that you've found our forums and joined our community and I'm looking forward to reading your posts and getting to know you.

 

Here's a welcoming :emoticons-group-hug: from all of us (I'm the red one!)

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Sue

 

Welcome to the forums! What type of scleroderma have you been diagnosed with, localised? I have never heard of this particular cream and having looked at the link Jo provided it's main use is for psoriasis which causes excessive skin production, overgrowth of skin cells is not what scleroderma causes. Taken direct from our site:

 

Scleroderma refers to a group of rare chronic autoimmune diseases in which the skin and connective tissues tighten and harden; it is a progressive disease. Scleroderma occurs when the body produces and accumulates too much collagen in tissues.

 

Scleroderma causes the body to produce too much collegen which can cause skin, and internal organs in the systemic forms of the disease, to harden. It is a very complicated disease and is best treated by a scleroderma expert and again Jo had given you a link to the list of specialists.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thanks for the replies. My consultant did a biopsy and I will get the results of this on 15th December. Having a really bad day today - can't lift my arms very high as skin underarm is so tight and also skin around waist - difficult to tolerate any clothing! I am 66 so expected to get "wrinkly" but this is NOT what I expected!

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Hello Sue

 

Yep clothing won't be your friend for awhile yet. I have systemic and localised scleroderma and initially had widespread skin involvement and I could not tolerate a lot of normal clothing, it had to be seemless, soft, loose and easy to get on/off. I have a friend with systemic scleroderma and lupus overlap that affects her skin and when I first met her about 2 years ago she used to wear her clothes inside out to avoid seems and when at home...well let's just say she went wild and free! She's in her 60's too so maybe what works for her...! :lol:

 

Once your biopsy comes back do let us know!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Sue,

 

I have heard of Dovonex being used to treat localised scleroderma e.g Morphea. I use Dovonex for psorasis and was told to be very careful not to apply it to the areas surrounding the psoriasis plaques as it causes soreness.

 

Lizzie

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Hi Sue,

 

Ouch and ouch, I suffer badly from skin tightening over my body which is progressing at a fast rate. I do not take medicine for it but I do everyday clart and I mean clart myself in Epaderm cream which I got from the G.P which keeps the skin really well moistursed. It is very hard when the skin is so tight and it gets so frustrating not being able to move the same.

 

I go to see the physiotherapist weekly to go to her class in a hydrotherapy pool and that really helps with the tightening skin to aid better movement. I don't know if there is anything like that in your area but it may be worth while asking.

 

I hope the red areas clear up soon :)

 

from Marlene

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