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Biomarker for Diffuse Scleroderma skin has been discovered!


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Toe ulcer


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#1 Helen

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Posted 04 September 2013 - 04:33 AM

Hi Everyone

I have posted before about my toe ulcer which I have now had for 18 months. Just wondering if anyone has had one that has cleared up. I am seriously considering getting the top of my toe removed as I can't see it ever getting better. Three weeks ago I had 4 days of Illoprost Infusions followed by a stent put in a vein in my leg to improve circulation, which has worked well. At least if I get my toe removed it should heal with the improved circulation. The pain of the ulcer is driving me crazy as I think it is infected once again. Would like to hear from anyone who has had a similar problem.

Thanking you in advance

Helen

#2 Amanda Thorpe

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Posted 04 September 2013 - 05:21 AM

Hello Helen

 

I hear ya! I have had ulcers for about 3 years and I mean the same ones! The one on my left foot nearly went, opened up again and now can't decide whether it's getting better or not, the one on the right foot was about to close completely and then within a week sprang open and is now bigger than ever. I also have an ulcer on my right shin caused by trauma to the shin and has been there since May of this year. I also have had ulcers on the underside of my wrists which I have to keep bandaged as the skin is so hypersensitive and painful.

 

My first bout of cellulitis came about from the ulcer on my right wrist becoming infected, spent 10 days in hospital having IV antibiotics, the pain was amazing! They considered operating to take out the infection but decided against it in case the wound did not heal/also became infected. I am sorry to say this but I don't think they will operate on your toe for exactly those reasons.

 

My ulcers are caused by the skin breaking down and are nothing to do with blood flow which is excellent. There's nothing I can do other than elevate my feet and legs when I sit and stand/walk as little as possible, indeed the ulcers weep if I don't elevate my feet, I also have stasis eczema which breaks out if I don't elevate. The only thing I know for sure is that standing/walking will make the ulcers worse.

 

The ulcers are very painful and you need to see your doctor/pain management to find what works for you and something will. If you have problems with tablets they can prescribe patches so don't be deterred, pain is often under treated by doctors, it won't prove fatal so it's not their priority, it wrecks our quality of life so it IS our priority!

 

The only other person I know of with scleroderma and foot and leg ulcers had them for 30 years, she always had at least one ulcer for 30 years. I have lost contact with her so I don't know how she is nowadays, I hope she's well.

 

I have District Nurses come in every week to assess and dress my ulcers, including the Tissue Viability Nurse who suggests new dressings etc. and I am also seen by the hospital. Everything that can be done is being done and yet they persist. I have come to accept that ulcers are part of my life and will be for some time to come so I try not to be disappointed or surprised when they open up again or just stay static.

 

I hope this helps and take care.


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#3 Joelf

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Posted 04 September 2013 - 06:38 AM

Hi Helen,

 

It's great to hear from you again, but I'm sorry that you're suffering so much with painful ulcers. Unfortunately, they do seem to be part and parcel of having Scleroderma, as Amanda has testified and although thankfully I've never suffered with digital ulcers, at the present time I seem to have contracted a virus which has caused ulcers to break out all over the inside of my mouth; particularly awkward as I was due to have a tooth removed next week and the way my mouth is at present, I wouldn't allow anyone to touch it on pain of death!! :glare: 

 

I've included a link for you to our medical page on Treatments for Digital Ulcers: Surgical which I hope will give you some more information. I do hope that you will be able to find a satisfactory solution to your ulcer and can find a way to improve your quality of life.

 

Kind regards, 


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#4 Amanda Thorpe

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Posted 04 September 2013 - 02:15 PM

Yikes Jo, that must be soooo painful! 

 

Take care.


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#5 Shelley Ensz

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Posted 04 September 2013 - 05:47 PM

Hi Helen,

 

I'm also sorry that you are dealing with a toe ulcer.

 

Sometimes it turns out that amputation is the only viable option if you are dealing with gangrene.  See our page, Gangrene and Amputation.  Although it is most certainly unpleasant, many people who finally get to that point are just overjoyed to have the issue finally resolved.

 

I have had issues with toe ulcers on and off for many years. My last one took four months to heal, which by many standards around here is probably considered to be lickedy-split. However it hung around a lot longer than it needed to because I was very late on the uptake so I did not take proper care of it.  My doctors straightened me out on the subject. It was a very humbling experience so I strongly recommend that anyone with scleroderma and a non-healing finger or toe sore see their doctor.  A normal wound should heal within a week or two. If it doesn't seem to be a normal wound or if it doesn't seem to be healing on schedule, it is doctor time.

 

The thing is, and I know this which is why I feel doubly guilty for having ignored this, the longer a wound is wounded, the greater the likelihood that it will get even more wounded. The whole time it is around and open, it can be attracting other germs and bumped and prodded into hurting or growing even more.  Once it gets infected, with every passing day there is risk that the infection will get stronger.  And a chilling thought is that Superman (Christopher Reeves) died from a bed sore.

 

It's very worthwhile discussing all your remaining treatment options with your doctor, Helen. Sometimes, like Amanda says, even amputation isn't a good option, because of course the amputation may also be challenged with the healing process. But if the tissue is entirely dead, it isn't very likely to normalize itself, is it?

 

Please keep us in touch with what you find out, what your options are, and what you decide to do about it.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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#6 Helen

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Posted 05 September 2013 - 12:27 AM

Thanks everyone for your replies. As this was my first one, I wasn't sure what to do. If I get another one I will be much more aware of what treatment to use. I also have one under my heel, but that doesn't seem to be getting any worse. Yes Shelley, I would be quite happy if they remove it. It is by far the worse thing I am dealing with at the moment.

Kind regards

Helen



#7 Shelley Ensz

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Posted 05 September 2013 - 12:54 PM

Hi Helen,

 

You know you're dealing with a very weird illness when people become overjoyed with the small blessings in life...like amputation!  Seriously, I do know there is something wrong in Denmark when our reactions get so skewed. 

 

The flip side of that is that I think we cope better, overall, when we try to look at the up side of down things...and getting rid of a downer is an automatic upper, isn't it?

 

It's interesting that you said it is the worse thing you are dealing with at the moment. It recognizes that we evaluate our symptoms in terms of what else has gone on in the past, is likely to go on in the future, but more importantly, what we are coping with, altogether, right this minute.  It doesn't minimize your other experiences, nor anyone else's, either. It gives it its own legitimacy in the overall scheme of things.

 

It also leaves room to change your mind about the absolute worst in the next moment, such as if you dropped a 20 lb turkey on your foot right after typing this.  Then your priorities would change from the ulcer being an issue to your entire foot being an issue. And by the same token, if the ulcer clears up in the next hour, it acknowledges that some other concern would emerge to the forefront for garnering your attention.

 

Which is all exactly as it should be. Sorry for rambling on, but I think "at the moment" summarizes a lot of our varying opinions about what's worst for ourselves, from moment to moment.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 Helen

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Posted 05 September 2013 - 01:53 PM

Yes Shelley we are a weird bunch :). Before this disease the thought of having a toe removed would have been shocking. I have had lots of different issues and my life has changed drastically over the last 7 years but this toe has put everything else in the background. I always try to stay positive but this has tested me more than anything else. I think I need better pain management...lol. It's so good to have this site to go to and when I hear what people like Amanda are going through I feel like a bit of a crybaby.

Thanks again

Helen



#9 Shelley Ensz

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Posted 05 September 2013 - 06:35 PM

Well, Helen, realistically, next to Amanda and some others, we probably are all crybabies!  But who cares? 

 

Everything is relative, to each of us, to all of us, and to each of our own symptoms and experiences, too.  It is what we are dealing with -- on behalf of ourselves or others -- in the moment, that matters most to all of us.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Amanda Thorpe

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Posted 11 September 2013 - 02:22 AM

It's a whole new world...a world in which amputation is celebrated...a world in which diagnosis of a terrible illness is celebrated...a world in which the prospect of major surgery is celebrated. What world is it I hear you cry? Why it's the weird 'n' wacky world of scleroderma!


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#11 Shelley Ensz

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Posted 17 September 2013 - 10:07 AM

Hi Helen,

 

Are there any more progress notes for your toe?  I am sending lots of healing thoughts your way and hoping that you are doing a little bit better. :emoticons-i-care:

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 Helen

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Posted 26 September 2013 - 05:42 PM

Just an update on my toe. I went into hospital for 4 days of Iloprost infusions. While in there the doctors sent pictures of my ulcers to a Brisbane hospital - 700klms away. They said to send me down to get a stent in my leg to improve blood flow to my foot. So the flying doctors flew me down and the procedure was done. Instantly my foot was nice and pink, whereas before it was quite white. So now a few weeks later I have basically no pain in my heel or toe. The heel seems to be healing, will have to wait and see with the toe as the end is black, I think it will have to heal from the inside. I wish I had the stent in before the Iloprost as I was quite sick for a few weeks after that treatment. That's why I haven't been on here before this as it knocked me around quite a bit. Am finally back to my normal self.

#13 judyt

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Posted 26 September 2013 - 11:18 PM

Hi Helen,

 

That is just the best news.   I just hope that you continue to do well.   I have been troubled by venous incompetence in my legs for most of my adult life.   That along with the Raynaud's has given me all sorts of trouble over the years.  

 

Ulcers are the absolute pits and I can tell my problems are not as serious as yours so I am happy for you that you have had some relief. 

 

Long may it continue.

 

Judyt



#14 Joelf

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Posted 27 September 2013 - 04:00 AM

Hi Helen, 

 

What absolutely super news; I'm really pleased for you! :bravo:

 

I really hope that your toe does heal satisfactorily and that you continue to have relief from the pain.

 

Kind regards,


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#15 Amanda Thorpe

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Posted 27 September 2013 - 10:47 AM

Hooray for you Helen and I hope this is the end of your ulcers...forever! I know what you mean about Iloprost as well, awful stuff, well the side effects are it's a great drug.

 

Take care.


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#16 Helen

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Posted 29 September 2013 - 03:31 AM

Thanks everyone for the warm wishes. I'm keeping my fingers crossed.

Sending good thoughts to you all.