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How does it look when skin thickening starts?


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#1 Eos

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Posted 28 November 2009 - 05:26 AM

So I have had a really bad 'rubberband feeling'-ischemic finger since summer, which is getting progressively worse. In the past few days my skin on one wide of the joint of this finger has become real thick, almost like a callus... just I did not do anything to create a callus.... looks like the hard part is swollen and elevated. Is this what happens??? so upset!!!!! :emoticon-bang-head:

#2 janey

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Posted 28 November 2009 - 06:18 AM

Eos,

I've had dry, cracking knuckles, but nothing I would call a callus. If it starts become painful or grow, please see your doctor. Things like this need to be caught early. Just keep your hands moist and try not to bump in to things. Have someone else do the dishes and cleaning and sit back with a hot cup of tea.
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#3 Amanda Thorpe

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Posted 28 November 2009 - 08:06 AM

Hello Eos

If you're wondering if this is the start of skin involvement I'm afraid none of us can say for sure either way. Your best bet is to do as Janey suggested and see your doctor.

When my skin involvement started the skin was tight not thick and I could not move the joints it covered. My tight skin does not look callous like it looks tight.

Please try not to worry about worst case scenario, I did in the beginning and guess what, it never happened.

Take care.
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#4 kiby1

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Posted 29 November 2009 - 10:14 AM

Hi,

The skin on my hands feels tight and my fingers swell a bit, but they absolutely feel stranger than they look. Did skin involvement go that way for you? Raynaud's is "picking up a bit" but so far I have good control over it and only happens on occasion or when I am outside too long without gloves.

I'm finally ready to start talking to others about this disease. I think I've been in a bit of denial because so far symptoms seem to be mild and every time I do any research I get the least symptom. lol Thanks.

#5 Shelley Ensz

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Posted 30 November 2009 - 08:06 AM

Hi Eos,

I really feel for you. As it happens, I think I'd be more worried about the ischemic finger. Are you on any treatments that are helping it? That sort of thing can go downhill quickly.

My skin tightening began as just that, skin tightening. It was not and is not like a callus. My skin is indented where it is tightened, because the tightness pulls it inward. In fingers, tightening generally begins as overall swelling which causes the fingers to look rather like sausages and the wrinkles stretch out or disappear. Then when the skin tightens, the swelling goes down, the fingers are, overall, smaller and the skin is very taut (unpinchable). So with systemic scleroderma it is more an overall thing that happens to the hands, and not a single, callusy-type spot. I think. In general. But of course, I may be wrong -- I often am!

So, personally (although keep in mind I have absolutely no medical training at all), I'd be far more concerned about the ischemia and camping out at my doctor's making sure it is brought under control as rapidly as possible. Failure to do so can bring on ugly things, like bad ulcers, gangrene, and amputation. Not to be alarming about it, but just to point out it is nothing to just put up with.
Warm Hugs,

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#6 Sharon T

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Posted 30 November 2009 - 11:19 AM

Hi Kiby,

I'm a newbie also. Ive have Raynaud's for many years with very mild controllable symptoms, but I've progressed to limited scleroderma with lung and other organ issues. I'm lucky that all of my symptoms so far are mild to moderate and haven't altered my life too awfully much.

My hands are swollen most of the time, with fingers looking like little sausages, and with limited bendability at the joints when the swelling is the worst. The goods news is that its been like this for years, with no significant worsening. I have hopes that the other organs involved will likewise either remain the same or at least progress verrrrrry slowly!

This is definitely one of those conditions that refuse to be pigeonholed - it seems that each person's experience is different, both as to parts of the body involved and severity of the involvement.

At least, its interesting! Hang in there, and don't believe everything you read on the internet - its way too scary and not really relevant to the larger world of scleroderma patients. And welcome to the forum!
Sharon T.

#7 Eos

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Posted 30 November 2009 - 04:54 PM

Hi,

Thanks, yes it is a bit swollen.

Ischemia...I have to wait until January at least to switch insurances and then to go out of state to get prostaglandin IV as meds don't do the trick 100% of the time. I am on procardia and pletal. Nothing else worked or was too strong to be tolerable. I thought I was going nuts when my rheumatologist told me she does not know where I can get it done and I should call around and if I have to pay myself I should get it done because I am young, etc. Yeah sure how about I send the bill to her? That's the last time I went there. It is a sad sad situation! :temper-tantrum:

#8 Shelley Ensz

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Posted 01 December 2009 - 08:48 AM

Hi Eos,

In my own opinion, usually, it would be our doctors who could/should/would find out what centers offered any therapy that they prescribe for us. So, it is very unusual that you were left to your own devices on such a very serious issue; therefore you really should get a second opinion on this (and preferably a new scleroderma expert.)

Anyway, one of our medical advisers suggested you could try Soumya Chatterjee at the Cleveland Clinic (in Ohio) or Lee Shapiro in Albany, New York for likely centers that would provide prostaglandin infusions. You can find them listed in our Scleroderma Experts.
Warm Hugs,

Shelley Ensz
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#9 Eos

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Posted 03 December 2009 - 12:44 PM

Thanks Shelley. I am seeing Dr. Medsger again in 7 days. I can get it done there if he considers it medically necessary but only if I switch insurance in January.

Albany? Really that is not too far. I will have to check this.

Yes, this doctor. has been a pain! Everybody in my local support group who sees her too has issues with her and how they are being treated. The office staff is great but the doctor... not so great. :temper-tantrum:

#10 Shelley Ensz

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Posted 04 December 2009 - 12:39 PM

Hi Eos,

When you see Dr. Medsgar, you might want to consider asking if he can recommend any local rheumatologist for you.

And I'm sure he'll provide great advice for your finger, as well.
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.

#11 kiby1

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Posted 06 December 2009 - 08:34 AM

Hi Sharon,

Thanks for posting. It's a relief to hear about someone having similar symptoms without them progressing too quickly; that is what I'm hoping for. I'll find out in January if I have lung or heart involvement. I'll be interested to see. It feels like I do, but, again, so much I think is quiet fear and in my head.

Have a good day!

#12 Sam

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Posted 08 December 2009 - 02:21 AM

I have hardening at the finger tip this has been going on for a month it drives me nuts cause I don't want to leave it alone. I don't see the Sclero doctor for another week or so. I don't have much skin tightening but I was wondering the same thing what does it look like.
Sam