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dimarzio

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The term I use when describing limited systemic scleroderma is "slower progressing".  The term "mild" is really not an accurate way of describing this variant of systemic scleroderma.

I don't think anyone would describe MS as "mild".  Limited systemic scleroderma is at least at this level, often worse.


Ed Harris

Scleroderma Education Project

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Nothing is anything to do with scleroderma apparently.

 

This ulcer (photo here) appeared on my hand overnight and general practitioner put it down to a reaction to antibiotics. I asked him if it was related to scleroderma and he said no. I asked him if he knew what scleroderma was and he said no to that too.

 

He then fiddled with his computer again for a few seconds and said it was nothing to do with scleroderma and that it should go away with an antihistamine.

 

Whenever I see a general practitioner I always ask them if they know what scleroderma is and some honestly say no, whereas the older ones are clearly trying to bluff their way out of it when they say they do.

Not sure what to do at times with this quality of healthcare.

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Hi Dimarzio,

 

Poor you, that does look very sore and painful. :sad:

 

Amanda had bad ulcers on her wrists and I know she has had terrible problems getting them to heal.

 

Not much help I know, but I would be going back to my doctor's practice and insist on seeing another doctor with a little more of an obliging and sympathetic attitude.

 

You could also print off our medical page on Digital Ulcers in Systemic Sclerosis and actually take it to him and show him (if he doesn't believe that ulcers can be due to scleroderma.)

 

I'm sorry that you are having such a bad time with your medical team; in fairness to my general practitioner's, I've always found them helpful and whilst they're not scleroderma experts, they are quite prepared to take on board what I tell them (I do have a fondness for telling them how to do their job, in the nicest possible way, of course! :wink: )

 

Kind regards,


Jo Frowde

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International Scleroderma Network (ISN)

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I wouldn't say he was unsympathetic Jo, he just didn't know what he was talking about. I prefer it if they admit to knowing nothing about scleroderma to the ones who say they do when they quite clearly don't.

Not sure how to treat this one though, I've left it uncovered for a couple of weeks, but it keeps cracking. If I cover it, will that delay healing further? Should I use antiseptic creams? Just don't know how to tackle it.

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We have got some topical wound healing information on our Treatment for Digital Ulcers page, but although your doctors do seem fairly clueless about dealing with scleroderma, I would still be inclined to go back to them and perhaps have your ulcerated wrist dressed by their nurses.

 

We do have a rule of thumb "If it has not started healing in a month, it's not healing — it's getting worse!"

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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Thanks Jo, some interesting info there. I was thinking about Manuka Honey, but most of the stuff on sale isn't pure enough.

 

I will certainly bear in mind the one month rule of thumb.

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Treatment of digital ulcers is very difficult and often unsuccessful.  You may find this research poster that I presented last November at the American College of Rheumatology Meeting in DC interesting as it is directly related to this topic: http://sclerodermainfo.org/pdf/ACR-Handout-US.pdf.


Ed Harris

Scleroderma Education Project

A member of the ISN's Scleroderma Webmasters Association (SWA)

(Only SWA members may post links to their own site in forums posts)

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Hi Dimarzio,

 

As you no doubt expected you have received plenty of evidence from others of us that Ulcers are certainly associated with Scleroderma, although more often they are on digits and ankles due to lack of proper circulation.

 

My bug bear has been ankles, I know I have compromised venous return which causes a build up of toxins in such places and so wear thigh high support stockingsevery single day and have done for getting on for 10 years now.   Even when taking that much care the ulcers still erupt uninvited and then when there is an injury of some sort an ulcer is almost inevitable.

 

Here in NZ we have Community Support services which are staffed by nurses who are expert at dealing with these pesky things but even so they can take as long as a year to heal.   I injured my shin while in hospital 2 years ago and in the last few months the damaged area has decided to ulcerate.   I am just starting to see the Ulcer Nurses and expect to become good friends with them :wink: :wink: .

 

Take no notice of the general practitioner who knows nothing and trust the advice you get here.

 

Best wishes

Judyt


Judy Trewartha

(Retired) ISN Support Specialist

International Scleroderma Network (ISN)

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The ACR research poster was actually just a spinoff from a paper that I presented at the American Society for Apheresis last May.  It was a comprehensive review of the 40 published papers on the use of therapeutic plasma exchange to treat SSc.  We are turning that into a manuscript now for submission to a journal soon.  Here is the handout version of the review poster: http://www.sclerodermainfo.org/pdf/ASFA-Handout-US.pdf.


Ed Harris

Scleroderma Education Project

A member of the ISN's Scleroderma Webmasters Association (SWA)

(Only SWA members may post links to their own site in forums posts)

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Hi everyone.....I am finding this an interesting thread and quite noteworthy concerning Gareth.  

 

As I told everyone, he had a Power Port installed the end of February.  The top stitches were taken out two weeks later, with self dissolving stitches underneath.  It appeared to be healing okay, on top, but after another week or two, we all noticed the scar was getting much wider, even though it appeared to be healed over.  When asked, Gareth would say *it's fine*  *no hurt*.  Last Monday, I had him in for a recheck and they didn't like what they saw. They lanced the thin top scar and there were two pockets of unhealed tissue.  Needless to say, no one was happy.  I never thought about it being Sclero related....the lack of healing.  He's on Keflec for the week and will be back into the doctor's office this Monday.  His next IV Ig will be Wed, but I'm not sure they will be able to use the port with the unhealed tissue around it.  Even today, the two pockets appear the same as they did on Monday.......not good  :sad:    

 

Once again, thank you, for the information everyone passes along.

 

Take care, everyone,

Margaret

Mom to Gareth, 28 years old, DS/ASD

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Hello Margaret,

 

Reading your post I am tempted to think of the non-healing in terms of the problems some of us have with ulcers.

 

An ulcer is really just an area which won't heal as I know to my eternal regret.   Just at the moment I am faced with a large area on my shin which won't heal and is now infected.

 

It seems to me, after talking to a wound nurse yesterday, that I should have spoken up a couple of years ago when this area was injured.    Silly me just assumed it would eventually return itself to a normal state but it seems now that that has never and maybe will never happen.

 

Oh well we live and (hopefully) learn!!

 

Best wishes for some healing for Gareth

:hug-bear: :hug-bear: :hug-bear:

although maybe he doesn't need the bear hugs this time, but I sure do.

 

Judyt


Judy Trewartha

(Retired) ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Margaret,

 

So sorry that Gareth's port isn't working out as successfully as you'd hoped.

 

I know Shelley had to have her first port removed, as she developed a fibrin clot in it, which stopped it functioning properly.

 

I do hope that Gareth's port will heal eventually, as, once it's up and running properly, it must make his infusions much easier to give and deal with.

 

Here's hoping it will settle down and heal correctly.

 

:hug-group:

 

Best wishes,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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Hi everyone.

 

Margaret, where is the power port located? I've come accross ulceration on the fingers, toes, hands and feet and leg ulceration seems quite common with circulation problems but nowhere else on the body to my knowledge.

 

Difficult day for me today as I have been told "stop making a fuss, you are not an invalid" when I cramped trying to pick something up from the floor and again "just because you had a positive blood test doesn't mean that you've got it".

 

It really is driving me to despair.

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Hi Dimarzio,

 

Gareth's port was installed below the collar bone, on the left side.  His incision was infected from below the thin scar tissue that covered the wound. Once they lanced the thin skin layer over it, it revealed the two, small, ulcer-like areas below. There are many causes for ulcers; I just didn't know that scleroderma ulcers had to do with capillary/blood issues.  He has had large cavernous ulcers before, usually on his legs, and they have taken forever to heal.  Maybe they can use that medical super glue and put his incision back together,  if it's not infected.   :lol:   Fortunately, he doesn't complain about being in pain.

 

Take care, Everyone.

Margaret

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