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Biomarker for Diffuse Scleroderma skin has been discovered!


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Tissue viability nurse and local group meeting...


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#1 Amanda Thorpe

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Posted 29 May 2011 - 04:11 PM

Hello All

Well Friday the District Nurse and the Tissue Viability Nurse (TVN) came to see my ulcers...all 4 of them. You see when they dressed my feet on Tuesday I had one ulcer on each foot, when I took the dressings off on Friday I had two on each foot! I kid you not. At least it explained why a certain spot on my left foot had suddenly become so painful, it was growing ulcer number two. On my right foot the baby ulcer that had previously healed opened up again so it could join in the party. Clearly I am going for some sort of record.

The Nurses recommended different dressings, podiatry and will try to arrange for me to see the TVN at the Royal Free when I am there next. Now it's a case of try it and see with the new dressings that will hopefully start some time this week. If I become concerned again at the lack of progress I can also ask to see the TVN again.

What's now concerning me about the ulcers is how easily and frequently they are appearing. I think it's because the skin is breaking down thanks to the scleroderma which then begs the question when will the ulcer fest end?

So on the Saturday just gone I hosted the Scleroderma Society U.K. local group for Essex and it was great to see old friends and meet new ones! One lady who hadn't been for awhile due to ill health came and it was great to see her looking and feeling better. Another lady came for the first time who has had scleroderma since she was 18 and is now 50 so it is possible to live long and prosper with scleroderma! She has lost 50% of her lung function, has the most deformed hands and feet I have seen (sclerodactyly and bone reabsorption that has actually taken away joins) and has suffered with leg and foot ulcers most of the time involving over 10 skin grafts. She actually cried just discussing the pain she has had over the years from the ulcers. I of course started to think about myself and whether this was going to be my future...

It was also an opportunity to catch up with my dear friend who is seriously ill (read as dying) from scleroderma because the treatment isn't working yet. Needless to say we are hoping that it will start to work and she'll turn a corner, it is possible you know.

Finally, I have gone back onto the pain patch. Thanks to a tip from Jeannie I have started to put it on my abdomen instead of my arm and have found it much more effective as it's being better absorbed.

So that's it for my current adventures in sclerodermaland!

Take care.
Amanda Thorpe
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#2 judyt

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Posted 30 May 2011 - 04:26 AM

Hi Amanda,
So sorry to hear that you are breeding ulcers!! Thank goodness I only ever have had one at a time. My healing has not gone well over the past couple of weeks, the silver nitrate dressing just became more and more painful and when I took it off on Thursday I nearly went through the roof!! Replaced it with a wound dressing which is very mild but not doing any good. To cap it all off I dropped a piece of firewood (small log) on the top of the same foot on Thursday night so now I am only just able to get around!!! Serves me right for being clumsy. I am off to the general practitioner on Wednesday since the District Nurse has nothing more to offer. My guess is that I will be given another course of antibiotics which usually helps.

You didn't really say what the TVP nurse found (apart from more ulcers). I guess this is just one of those things we will have to live with. I do find that if I can keep my mind occupied with other things I don't notice it (the pain) quite as much.

I wish I could send lots of healing hands to help you.

Warm hugs from downunder

Judy T

#3 Joelf

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Posted 30 May 2011 - 07:15 AM

Hi Amanda,

Well, you're certainly having an interesting weekend!

I used to know someone who bred Netherland Dwarf Rabbits with the object of showing them at County level.....you've gone one better and are breeding ulcers!! :lol:

Joking apart, they must be excruciating and I am sorry that you're having so much pain and discomfort with them. It is worrying that your lady has had so much trouble with her ulcers; however, (always looking on the bright side! ;) ) it might be that yours won't follow the same path and perhaps nowadays the anti-biotics are more effective than they were when your lady first had her ulcers treated.

I do hope your friend's treatment will work; it makes me feel quite humble when I hear how stoic some Sclero sufferers can be and makes me feel ashamed to have grumbled about the discomfort I sometimes suffer with my hands. :blush:

I'm really glad the pain patch is helping you and that you've found a way to make it more effective.

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#4 Amanda Thorpe

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Posted 30 May 2011 - 09:02 AM

Ladies you are hilarious! :lol: Breeding ulcers...love it...maybe I should start giving them names? I had a clumsy moment last week when I dropped a tin of coconut milk, from a height, onto my foot of all places. Typical eh?

Take care.
Amanda Thorpe
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#5 Vanessa

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Posted 30 May 2011 - 03:52 PM

Oh Amanda,

I am so sorry to hear that you are having such a tough time.

I didn't realise that ulcers were treated with antibiotics. Are they infected then?

I hope you soon get some relief.

Vanessa

#6 Amanda Thorpe

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Posted 31 May 2011 - 04:38 AM

Hello Vanessa

Good question and the answer is yes...and no! They swabbed them and they showed coliform bacteria that would need IV antibiotics, however if you swab any wound it will grow something bacterial eventually. The Nurses are of the opinion that as I am not systemically unwell from the bacteria and provided the bacteria doesn't impede wound healing they won't treat it. They don't want to hit my system with IV antibiotics unless they absolutely have to and that's fine by me as I suspect it would me a hospital visit.

The Nurse has just dressed them again and guess what...ulcer number 5 has arrived! :lol:

Take care.
Amanda Thorpe
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#7 Joelf

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Posted 31 May 2011 - 07:06 AM

Five ulcers now!! :wacko: They breed more prolifically than "The Tribbles" in "Star Trek" (it's life, Jim...etc.)!! :lol:

Amanda, you really shouldn't leave those ulcers to their own devices underneath your dressings......goodness knows what they get up to when you're not watching them!!! ;) :lol: :lol:

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#8 JaneLesley

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Posted 31 May 2011 - 10:21 AM

Oh Amanda

I was going to say that the NHS is obviously better at your side of the Country - one nurse per ulcer - but now I read you have five ulcers -one nurse missing - must be the cut-backs!

Seriously I really hope you start to heal very soon.

New doctors, new medication and new ulcers - I quite literally would not wish to be in your shoes. You sound like you need a holiday from Scleroderma - I wish I could grant it.

Sending lots of healing wishes

Jane

#9 judyt

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Posted 01 June 2011 - 06:46 PM

Hi There,

An update on me and my poor sore foot!!

I had an appointment with my general practitioner at 9.40am yesterday and got out of there sometime after 11am!! First I had an Xray to check that nothing was broken - and it is not thank goodness. Worst part of that exercise was getting myself to Xray Office. They gave me crutches and I set off across the road to the next building down the street, through the carpark, up the long ramp and along the corridor - by now I am puffing and going slower and slower. Arrived at Reception to be greeted by a horrified receptionist who put me straight into a wheelchair!!!! After the Xray this nice lady put on her coat (it was raining by now) and wheeled me and my films and crutches back to where I came from.

Next the treatment for my ulcer - the nurse couldn't clean it up properly because it is SO SORE so I came home with a dab of gel and a temporary dressing on it and 100 - yes 100 antibiotic tablets. I am to take them 3 a day for one week and then 2 a day until they are finished.

Managed to change the dressing and clean up the sore bit quite successfully this morning so we will see what transpires. My take on the Antibiotic thing is that the infection actually comes from inside the flesh because the vascular system is impaired, the rubbish collection is not as efficient as it should be so waste builds up and so an infection starts. The doctor says that this thing has been going on too long (nearly a year) so lets see if we can fix it once and for all.

Will keep you informed about how it goes.

Soft healing hugs from Judy T

#10 Amanda Thorpe

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Posted 01 June 2011 - 10:45 PM

Jo your reference to tribbles is actually quite fitting, when I spoke at the Scleroderma Society AGM a few years ago, I said in my speech "It's life Jim but not as we know it!" My Star Trek reference has come home to roost!

Jane, a nurse per ulcer, now I'm likin' that! I wouldn't mind some austerity measures being taken to my ulcers!

Judy, I hope you heal quickly and painlessly! Man don't ulcers outstay their welcome!

Take care.
Amanda Thorpe
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