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amberjolie

Beginning of Sclerodactyly?

10 posts in this topic

Hello everyone!

 

For those of you who haven't seen my other posts (I'm an infrequent poster), I'm someone who definitely has Sjogren's, and possibly has CREST.

 

I've had some symptom development that I wanted to see if it was the start of sclerodactyly.

 

Firstly, my join pain and stiffness has really increased, not only in the fingers and wrists, but now in the feet, the knees, and even the elbows. Now I know that's common to a lot of autoimmune issues.

 

Secondly, I had posted earlier that it appears some of my fingerprints are disappearing.

 

Now what I'm noticing is that some of my cuticles are stiff and slightly stretched (I used to be able to push back cuticles that were doing that and they softened up and looked better, but now they're staying that way), and the skin directly under my cuticles seems smoothish and shini-ish. And those areas seem to have a reddish appearance all the time.

 

I can never tell if some of the things I see have always been there and I just didn't notice until now, or if it really is a new development. Can anyone tell me if this could be the start of sclerodactyly, or am I just jumping the gun and it really isn't anything?

 

And if it seems to be the start, should I go see my rheumatologist soon, or wait until my August update appointment, since it may have developed further and more obviously by then? I've already tried plaquenil that didn't seem to help, so I don't know if it even matters if he sees it yet if there isn't anything that can be done anyway. I will be seeing a dermatologist in a few weeks for something else...

 

Thanks in advance!

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Hi Amberjolie,

 

It's nice to hear from you again!

 

I've had this too:

 

Now what I'm noticing is that some of my cuticles are stiff and slightly stretched (I used to be able to push back cuticles that were doing that and they softened up and looked better, but now they're staying that way), and the skin directly under my cuticles seems smoothish and shini-ish. And those areas seem to have a reddish appearance all the time.

I've had it for close to five years and it's never gone any further, so hopefully yours won't either. It might get you closer to a positive diagnosis, though, since I believe it is due to capillary dropout. Here's the relevant page on Fingernails, Fingerprints, Nailfolds, and Cuticles. As far as calling your rheumatologist and bringing your appointment forward, I think I'd wait until August to see him.


Jeannie McClelland

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Hello!

 

Thanks for the reply.

 

Another odd thing, at least I think it's odd - that pattern that they say they see in the nails under a microscope - I'm seeing that with the naked eye in most of my nails. I have to focus closely, but it's there. Is this something that is supposed to be able to be seen with the naked eye, or am I just seeing things?

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Hmmm, that's an interesting question. I don't know if you are supposed to see it or not. I imagine that if your nails are very thin and translucent, you might well be able to see something.

 

With me, the texture of the nail itself has changed. I've got lumps, bumps, ridges, dents, white spots here and there~ I'd read a lot of articles on what various nail changes might signify (you know how it is~), at least until I realized I had most of the changes. :emoticon-dont-know: So I stopped worrying that I had yet more weird and wonderful ailments and have just put it down to years of serious overuse of my hands and a total disregard of the benefits of rubber gloves when stripping paint off a complete stairwell, etc. :lol:


Jeannie McClelland

(Retired) ISN Director of Support Services

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(Retired) ISN Blog Manager

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(Retired) ISN Artist

International Scleroderma Network

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Hi Amberjolie,

Sorry to hear you've been having some worrying symptoms with your fingers and nails.

I think the procedure you're referring to is nailfold capillaroscopy. I've had that done and the doctor placed a substance rather like nail vanish on the base of my finger nails and then looked at my nails under a rather natty little machine, which showed the enlarged and disorganised capillaries in my fingers. This is used to determine the difference between a person with primary Raynaud's and Raynaud's secondary to Scleroderma.

I must admit that I can't see anything on my finger tips apart from a very small amount of shiny skin, almost down to the first knuckle. This is the only noticable skin involvement I have.

My hands have been used for all sorts of rough work particularly when I had my horse and my hands are showing, like Jeannie's, the result of years of wear and tear in cold, damp weather. wink.gif


Jo Frowde

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Hello Amberjolie,

I too am guilty of hammering my hands most of my life. I try and be kind to them now, but they still take a pretty good beating. I try and keep goop on them to keep them from getting too dry.

My understanding of the nail bed changes is related to Raynauds. My doctor put a gel on my nail bed and showed me where I had capillaries that "dropped out" and were frayed at the end. He said the best finger to see this is the ring finger. He was quite excited to see my fine specimens of drop outs. There is not really anything that can be done about it - just helps in the diagnosis. The sclerdactyly from my understanding is the skin actually becoming hard, thick and shiny. I had a good case of it when I was diagnosed. I had not realized that the wrinkles around my knuckles had completely disappeared, compliments of the tightening. People often commented on my hands looking sunburned, when they were not. My skin has softened since starting some of the meds - took about a year and while they are still swollen much of the time, it is better. My doctor measures the distance from my thumb tip to my pinky tip on both hands every time so he can monitor whether I am loosing the stretchiness in my skin. So far it has stayed stable.

This disease can make you nuts for sure. Noticing every change in your body and wondering if it is related to the disease. Some times it is and some times it's not and it often does not matter as there is not much that can be done. The big one to do something about quickly is changes in breathing. Most of us have a slow moving version, so getting in to see a doctor sooner rather than later is not so important. The trick is to not let every change stress you out.

 

Jill

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Thanks for all the replies!

 

I have plenty of wrinkles on my knuckles, so if anything is happening, it's going slow and hasn't progressed too far. I have what I feel are changes in breathing (often get a wheeze at the end of a big breath), but I've done the breathing tests and echocardiograms, and everything seems to check out. I should probably see the pulmonologist/respirologist (whatever he is!) again soon, but it's been slightly over a year so I'd have to be referred again, which means I'd have to first visit another doctor first I think. And I've got so many appointments as it is.

 

This stuff sure is a pain, isn't it? :P

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Hello AJ

 

I have sclerodactyly and for me it began with skin tightening on the back of the hand that then spread to the fingers and the rest was history. I have diffuse so the skin tightening was very, very fast.

 

Take care.


Amanda Thorpe

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Hi Amberjolie,

I to have exactly what you described. i have had it for about 4 years now what I have noticed is that the redness has began to spread in the last four months from the bottom of my cuticle half way to the top knuckle on my fingers. i always just put it down to the raynauds disease I didn't realise it was to do with the scleroderma involvement. but as I say I have had this for a few years along with joint stiffness in my fingers and swelling of my hands and fingers which is how it all started for me in 2003 I do have a few hard patches of skin on my hands they are average size and shiny patches too so I think it is just a case of only time can tell what the outcome will be in the future as this disease is so so different from one victim to the next.

hugs and loves :emoticon-hug:

Queenie

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How you are describing your nails is what mine look like exactly. And you can definitely see capillaries on mine with a naked eye, but the actual pattern you have to see under the microscope.

I haven't had more Sclerodactyly symptoms in years. Although my skin is always itchy and very dry. I even hate washing my hands because it gets itchy right away. Having lotion on me is a must.

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