Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

How long your skin thickening phase lasts?


  • Please log in to reply
10 replies to this topic

#1 erika

erika

    Silver Member

  • Members
  • PipPipPipPip
  • 106 posts

Posted 12 April 2010 - 10:26 PM

Hello everybody,

It is evident that sclero skin thickening phase varies tremendously among different cases. It may start quickly and than stop, it may start slowly and last for years. It may start, stop, start, stop... What are your experiences?

Here are mine:
After one year redness of the fingertips my skin thickening has started four months ago. I would rather call this skin thinning since the outside layer of the skin is shiny, thin and red underneath. Tightness varies from day to day: sometimes feels tight, sometimes feels normal. Waxing and shining but without visible deep skin inflamation or swelling has started on my whole fingers two months ago but it has stopped and returned to normal after a month or two (might be the result of the biological therapy ?).
Further I have thicker part of skin on my upper lip where thw skin changes penetrate deep through the inside side of the mouth feeling inside like a bubble or a pimple. The surface is cca 5 mm wide.
My feet soles also have skin changes but the skin is not thin or changed internally. It is just waxed, shiny and thicker than usual.
There is also shiny, thickend iching part around my bellybutton (sign of difuse colagenosys?). The itching started a year ago but at that time I paid no attention. Now that I know what this is I feel itching much more annoying. Fortunatelly it does not itch all the time.

What I have noticed is that there are two types of skin changes: one with inflamation which lasts "forever" and the other just waxing without deeper involvement.

I still do not find "holes" or depresions of the skin in the affected areas(is the expression for this "scarring"?) . I expect this to happen on the inside side of my elbow where I have a hard swelling for about two years. I was wondering what does this look like when it is happening.


I appreciate your contribution to this topic.
Regards

Erika

#2 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 13 April 2010 - 12:41 PM

Hi Erika,

I've just had a couple of weeks where I reacted badly to immunosuppression and calcium blockers, with horrendous all over body angry red itching rash. I had to be treated with steroids and antihistamines, but, here's the strange thing, where the rash was I now have the dry, waxing and thickening that you say you have and get bouts of itching that no creams or medication control!

I was diagnosed last June. I have stiffness in my hands, feet and knees. I have changes in my hands that only my consultant/GP sees, as to me they aren't in your face deformed or misshapen they are a little different in the way they bend, but are still fairly normal to look at. The hardness is starting to soften a bit on my body and doesn't feel as waxy as it did but it definitely doesn't have the same soft movable texture that it did and drinks in rich body creams!

So whether the drugs have aggravated my skin and damaged it I don't know, or whether I've had a flare up is unclear. I guess time will tell. My tummy button is tight and waxy too and my eyes are very dry and I need artificial tears. Hope my story helps you, keep posting how things pan out, okay?

Warm hugs,

Lynn :flowers:

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 14 April 2010 - 08:12 AM

Hello Erika

This must be one of the most popular sclero questions, it was certainly the first thing I asked of the very first sclerodermian I met. She couldn't really remember having had the tight skin phase 20 odd years ago and at the time I thought to myself man, there's no way I won't know exactly when it gets worse or better...er um I can't remember for sure!

I have diffuse which is the fast moving form of systemic sclerosis and my skin involvement went from calves and feet to just about all over in 6 months. I am into year 3 and still have skin involvement although it is much less that it was. It gets better so slowly I reckon it will be with me in some for for at least another 2 years but that's just my guess about my skin involvement mind.

There's supposed to be a 3 to 5 year active period with scleroderma but we're all so very different!

Take care.
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)

#4 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 15 April 2010 - 07:52 AM

Erika,
It was February of 2004 when I started having symptoms os scleroderma. I would wake up in the middle of the night with my arms and hands tingling and in pain. My hands became very sensitive to touch. My skin hardened quickly. It started with my arms and legs but spread to my back and my chest. I was stiff and found it hard to move. I was diagnosed in August and went to my scleroderma specialist in September. She used the Rodman scale to test my skin and the score was 45. My skin started softening about a year and a half ago which I think was a natural progression of the disease as I wasn't on any medication that would cause it. In March of this year my skin score was a 16. I am a little more flexible although I still find it difficult to get in certain positions. You can pinch my arms a little bit. People tell me I have more expression to my face. I hope your skin softens, too.

miocean
ISN Artist

#5 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 15 April 2010 - 08:51 AM

Goodness me, I think I must have been jolly lucky as my skin involvement is very minimal (just the tips of my fingers and a skin score of 2!! :emoticons-yes: )

I'm fervently hoping that because my Scleroderma was diagnosed early and I'm now on immune suppressants that my skin might not get any worse (fingers crossed!! ;) )

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#6 erika

erika

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 106 posts

Posted 16 April 2010 - 02:29 AM

Dear Girls,

Well this is comforting at least when the skin is in question. In the beginning when I started to research about scleroderma I thought that when you get skin changed it is forever. From your posts I can conclude that majority of skin changes improve in few years. In this way it is a little less frightening to observe the skin changes as they occur. I tell myself well it is thickening now but in ten years it may be normal again (if I survive that long - but that's another story).
Thank you for your input. :happy-day:

Have a nice weekend!

Erika

PS: We expect a large cloud of volcanic ash coming from Island these days. It stops the air traffic. I have some fears about whether it will be possible to breathe. Hopefully the smoke has dissolved somewhere in the atmosphere.

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 17 April 2010 - 05:33 AM

Hello Erika

The ash has grounded flights all over the UK. I think that it is to0 high in the atmosphere to affect us.

Take care.
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)

#8 erika

erika

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 106 posts

Posted 20 April 2010 - 03:08 AM

That is correct Amanda. Our cloud in Croatia did not go down, it came and went away without notice to people on surface. The air traffic has normalised to southern destination but varies to northern Europe and UK.
Stay well

Erika

#9 Deb1million

Deb1million

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Maldon, Essex, UK

Posted 21 April 2010 - 09:24 AM

hi ladies
I may be too late to chip in with the skin issues, but just wanted to say that my skin changes are very minor and I have diffuse systemic sclero with multiple overlaps. My hands are very tight, as well as my upper arms, and a bit on my face. I was started on Cellcept & Plaquenil as soon as I was diagnosed, and I believe this has helped my skin as well as my internal organs which are affected.

Also a note that the volcanic ash over south eastern England has had an effect on my breathing, and also my eyes are much drier than usual. I'm using my tears gel all the time.
My car is also heavily covered in ash dust. The car wash people are making a fortune!

#10 aarti.shenoy

aarti.shenoy

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 17 May 2010 - 01:11 AM

Hey there,

My skin has softened a bit, as compared to what it used to be when it first started. But stiffness in my finger remains the same. In fact I think its increasing. Is there any known medicine which can reduce the stiffness and increase the mobility of the fingers?

#11 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 17 May 2010 - 01:45 AM

Hi aarti.shenoy,

Have you asked your doctor if you might have something in addition to scleroderma going on in the joints of your hand? It sounds a little like arthritis (you mentioned the joints themselves were red and swollen in another post) to me, but of course I'm not a doctor! I think it would definitely be worth seeing your doctor about.

A lot of us do exercises for our hands and a physical therapist can guide you in this. I have a whole series of mudras (hand 'poses', similar to yoga) that I do at least several times a day.

At any rate, welcome to the Forum. I'm glad you've joined us and look forward to getting to know you better.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network