Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Lower extremity ulcers in systemic sclerosis: features and response to therapy


  • Please log in to reply
10 replies to this topic

#1 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

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

Posted 15 November 2010 - 10:40 AM

Lower extremity ulcers in systemic sclerosis: features and response to therapy. Non-digital lower extremity ulcers are a difficult to treat complication of scleroderma seen both in limited and diffuse scleroderma and also in scleroderma sine scleroderma. They contribute to the pain and disability of advanced disease. VK Shanmugam. (PubMed) Int J Rheumatol. 2010; 2010: 747946. (Also see: Skin Involvement)

This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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

#2 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 15 November 2010 - 03:16 PM

Hi Jeannie,
Your posting of the article on Lower extremity ulcers today is interesting to me. I currently have an ulcer on each leg! one from an injury and one which just invited itself to the party.

Today I had to come home early from my Quilting Club meeting (and that does not go down well with me) to see the District Nurse who did a doppler study for my general practitioner. I have had these studies before but there seems to be a need to investigate further at the moment. I had always just put them down to my inheritence of poor quality leg veins but this article has prompted me to try to investigate whether they are related to my CREST.

I was not happy about missing some of quilting because I try quite hard to separate my disease from my social life I.e. some days are sacred to my pleasures. I am a very good and compliant patient as long as I can sort out my timetables not to clash!!

I have saved this article and intend to copy it and take it to my general practitioner when I see her tomorrow. She will have the doppler report by then and maybe, just maybe, we will be able to find somebody who might know a bit more. It is very hard here because there are no Sclero specialists that I have every heard of. Probably if I went to Sydney or Melbourne there would be one there.

However, thanks for the article, I really should not ramble on quite so much.

Thanks and hugs to you all.

Judyt

#3 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 18 November 2010 - 12:50 AM

Judyt.
What were the results of your doppler? What is the plan of attack that has been decided for your recovery of these ulcers? Please tell us when you are up to it.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#4 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 30 October 2011 - 03:15 AM

Judyt.
What were the results of your doppler? What is the plan of attack that has been decided for your recovery of these ulcers? Please tell us when you are up to it.

Hello Sheryl,
This is a bit of an experiment from me. I was just looking back through content and decided to look and see what I have rattled on about for the past couple of years and I came across a post from you which I had obviously never seen. I don't quite know if I have clicked the right buttons but I seem to have got a page to write on so here goesl

I can't remember exactly what the doppler results were but basically it was that the right leg which is where I have the most trouble has decreased venous return to the extent that I now wear thigh high compression stockings every day. In 2010 and prior to that I wore knee highs of compression 2 and since then I have 'graduated' to full length and the next stronger compression.

Since the time I was talking about back then I have had another ulcer on my right ankle and we (my general practitioner and I) managed to get rid of that one with 2 months of low dose antibiotic before it had its first birthday!! Yes I did get thrush too, but in the end it was worth it because my ankles are just fine now.

What I have learned about these ulcers is that they can be caused by either Venous Incompetence or Arterial Incompetence and if it is Arterial compression stockings are not helpful. In my case one leg is worse than the other so I wear the newest stocking on the right and an older one (therefore not quite as strong) on the left. The biggest problem is the cost :o at $NZ 250 a pair I make them last as long as I possibly can.

I have never met or even heard of anybody who wears stockings such as these and I am not surprised really - by the time I get them on in the morning I am ready for bed again - and they don't look very beautiful. I usually wear longs or tights which is OK in winter but summer is harder and I usually wear a long skirt.

The thing which makes me diligent about wearing them daily is that my legs don't swell, and I really don't like the feeling of swollen legs, and it wouldn't change the way I dress either to go without them because swollen ankles don't really look very nice.

I started out thinking it was a bit late to reply to your question after so long, but there is probably always somebody looking who might find the information helpful.

Judyt

#5 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 30 October 2011 - 04:08 PM

Thanks for the update. Sorry to hear that you are having to wear the dreaded compression socks. They are pure torture to put on or take off. I have been helping a neighbor to take his off every night since his heart attack a few weeks ago. My husband goes over in the mornings and helps put them on him until he gets up enough strength to do this himself. It may be another week or two. Dealing with swollen ankles or legs can be hard work. Keep up the good work so your legs don't start swelling again.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#6 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 30 October 2011 - 06:02 PM

Hi Sheryl,
Yes the stockings are hard work, but once I have them on I feel 'safe' somehow. They also help in the winter with keeping me warm. I believe that I got some very good advice when I was first fitted for them.

First of all I use open toe (mainly because in this compression range they don't make closed toe!!) which means I can use a silk sock to get them over my toes. The silk sock has a long toe piece which you can grip to remove it. Saves toes getting all tangled up in the works.

Second I was taught to use rubber gloves when working the stockings up my legs. I use heavy duty kitchen gloves and a flat palm to work them up. The flat palm of your hand grips onto the fabric and slides it up very easily - no I lie - more easily.

They are not easy to get off, but I am good at it now.

You are good to help your neighbour, I can understand that he really appreciates it.

Best wishes

Judyt

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 31 October 2011 - 12:34 AM

Hello Judyt

Well I'd better be seeing the stockings in the photo gallery pronto! I want a good laugh at someone else expense! :terrific: They must be like control underwear to get up and on, awhile ago I bought quite an expensive "sturdy" pair and couldn't get it above my knees for love nor money! Even broke out in a sweat trying to do it!


At present I still have foot ulcers and unfortunately now also leg ulcers at the bottom of the calves, it's never ending! Mind you at least I don't have to wear bandages all the way up like you do so it could always be worse.

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 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 31 October 2011 - 12:36 AM

Hello Sheryl

What a lovely neighbours you and your husband are, your kindness must make such a difference to your neighbours life.

For you both :flowers:

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)

#9 Joelf

Joelf

    Star Ruby Member

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

Posted 31 October 2011 - 02:29 AM

Hello Sheryl

What a lovely neighbours you and your husband are, your kindness must make such a difference to your neighbours life.

For you both :flowers:

Take care.


Indeed you are, Sheryl; how lucky your neighbour is to have people like you and your husband to help him. :flowers:

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)


#10 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 31 October 2011 - 02:57 AM

Well, Amanda,

They are probably not that gross to look at, but I notice them. I will try to photograph them just for you!! The ones I wear now are actually the deluxe model with stay-up tops so not so bad as control undies.

The ones I had before these were something else altogether. Each leg had its own half brief and a waist band. When I first got them they were big enough for a 6footer I am sure. Just as well I am a dab hand with the overlocker and I was able to alter them to more or less fit. But I can tell you nobody, but NOBODY is ever going to see a picture of me wearing them. I even put them on in private so Ian didn't have to see me in them.

Buying shoes is a picnic as well. First, I don't want to show off too much foot (encased in rubber) and then the stockings make my foot just that bit bigger so that alters the size. So now I can get a shoe that is modest enough but either too big or too small, or else it fits but is too brief around the heel or shows too much toe and therefore too much stocking sticking out the front. Oh dear I really don't like buying shoes. Some people are SO_O_O fussy.

On the plus side, if I wear them all the time I don't run the risk of ulcers, and you know what a bonus that is.

:thank-you: for your interest in my problem.
If you lived nearer I would invite you to come shoe shopping with me and we could have fun.

Best wishes and sweet dreams

JudyT

#11 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 31 October 2011 - 02:07 PM

Judy shopping with you would be fantastic, if only you were nearer!

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)