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Raynaud's and nailfold abnormalities


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#1 aftertheteacups

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Posted 02 January 2014 - 04:23 AM

Hello! I am looking to gather as much info as possible.

I recently discovered that I have an issue with the skin around my fingernails, and everywhere I look brings me to info about scleroderma. I'm not saying I have scleroderma, but I was hoping maybe someone could just clue me in. I would really appreciate it.

I'm a relatively healthy just-about 24 year old, who has had primary Raynaud's for 15 years. My mother has lupus--not sure if that is relevant but figured I'd mention it. For a while now (years maybe?) I have had slightly-red, shiny lumps around my finger nails that seem to become worse at certain times but are always there. I thought this happened to everyone, until I was googling to see if birth control can make Raynaud's worse and just happened to come across something that said, "See your doctor if you have shiny red skin around your nails."

I had to got to the doctor for a sore throat thing (unrelated), and had her look at the finger tips. She didn't really know what it was but looked in one of her books and said that she thought it was, "thrombosed cuticular telangiectasias." The entry about this was found in the scleroderma section of her book. She wants me to follow up with a rheumatologist and I made an appt in January.

After that, I started looking at my capillaries and I think they may be abnormal. I'm not sure what this means and if these issues are just coming from having Raynauds for a long time or if my primary Raynauds is actually secondary.  Any insight or advice would be great! Thank you and happy new year.


 



#2 judyt

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Posted 02 January 2014 - 10:59 AM

Hi,

 

We here are not in the business of diagnosis, but  there are plenty of folks here on the forum who have all sorts of manifestations of Scleroderma.

 

It is often Raynaud's which is the first indication that something is going on and in my case it appeared to me that my only symptom was Raynaud's, Telangiectasia and wild looking cuticles.   It took many years before anything else showed itself and I am inclined to think that your GP has done just the right thing referring you on to a Rheumatologist.

 

We are all so different that it takes an expert to make the call, so make sure you are going to see somebody who really knows.   Don't waste your time and energy, and possibly money! with the wrong person.

 

Best wishes

Judyt



#3 aftertheteacups

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Posted 02 January 2014 - 11:15 AM

Thank you for the help! I forgot to mention that I may have telangiectases on my face but I also have rocasea which leaves my face continually red and with dots and pimples and broken blood vessels.

I am going to my moms rheumatologist so I think he will be good to me! How long did you have the Raynaud's before you noticed the funky cuticles? Also why does sclero change your cuticles? I don't totally understand it!



#4 judyt

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Posted 02 January 2014 - 01:29 PM

Hi,

 

I started getting Raynaud's when I was about 22 in 1966 and living in the UK.   It is a bit hard to remember that far back to recall exact dates but I remember going to a Dermatologist when we got back to NZ and so that was probably about 1970 and on that basis I would have to say I had funky :emoticon-dont-know: cuticles about a year or so by then.   We were married in 1965 and my hands were beautiful that day!!!

 

I think the change is probably caused by the capilliaries in the nail bed becoming diseased, but don't quote me.  The Rheumy should be able to look at your capilliaries and see how they are doing.   There is a more precise method of looking at them but for a start a good magnifier will usually show some deformities.

 

Probably the most important thing for the Rheumatologist to do at this stage are some blood tests including ANA and dsDNA and see what that turns up.   Just because your Mom has Lupus doesn't make any difference to what is happening to you.   Scleroderma is non-familial, meaning that it is not inherited and more than one diagnosis in a family is bad luck rather than anything else.   More than one in a family is incredibly rare.

 

I started geting telangiectasias on my face, just one or two, about then too and I had and still have some on my fingertips.

 

Judyt



#5 Joelf

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Posted 02 January 2014 - 01:47 PM

Hi Afterthecups,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with Raynaud's for the last 15 years and I hope the link will give you some more information. It does explain the difference between primary Raynaud's and secondary Raynard's (as experienced by sufferers of connective tissue dieases) and further tests can be done by examination of nailfold capillaries. In primary Raynaud's, the blood vessels return to normal after an attack; however, in Raynaud's with Scleroderma there may be blood vessel scarring which can make medication ineffective. I've included another link to Normal Versus Abnormal Findings in Nailfold Capillaroscopy which I hope you'll find helpful and informative.

 

Only 5% to 20% of people with Raynaud's phenomenon subsequently develop scleroderma and it's likely that your rheumatologist will be doing further testing before a diagnosis can be determined.

 

Kind regards,

 

 


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#6 aftertheteacups

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Posted 02 January 2014 - 02:47 PM

Hi Judy, Thank you for the help. That's interesting that it only took a year or so for your cuticles to go funky. I wish I could remember how long mine have been weird. And I guess that is good that just because my mom has a CTD that doesn't mean I will get one (although I wish she didn't have one at all). 

 

Joelf, thank you also for the links! They are very helpful. I have read that since I developed Raynaud's at a young age I shouldn't be at a risk for connective tissue disease but I am confused why I have bleeds in my nailfolds...

 

Also, I apparently didn't read the instructions right--oops, sorry--so I just wanted to repost the links of what I was talking about. 

 

http://www.sclero.or.../1075-photo-12/

http://www.sclero.or.../1076-photo-11/

http://www.sclero.or...1074-photo-1-3/

http://www.sclero.or.../1073-photo-10/



#7 Shelley Ensz

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Posted 03 January 2014 - 09:43 PM

Hi Aftertheteacups,

 

Welcome to Sclero Forums!  I'm sorry you have Raynaud's and questions about scleroderma. Luckily the nailfold exam is fairly straightforward and should help answer a lot of questions. Also bear in mind that a diagnosis of scleroderma is made only after considering all the symptoms (or lack thereof).

 

As it happens, there is an increased risk of any autoimmune disease or one or two symptoms thereof if you have a close relative with any other connective tissue disease.  I can't find the abstract at the moment but I believe the risk is about 30% (anyone, please correct me if I am wrong.) So, since your mother has lupus it would not be unusual for you to exhibit one or two symptoms of lupus or any other autoimmune disease, without ever necessarily developing any full blown disease. Although in some ways that would be a comfort, in other ways, nothing that increases our risk of any ailment is very comforting, is it?

 

Fortunately, scleroderma is only very rarely familial. They did find that it runs in the Choctaw Indians in Oklahoma, in fact that's how they identified the genes involved in scleroderma. See Genetics and Scleroderma.

 

:emoticons-group-hug:


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

#8 Amanda Thorpe

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Posted 06 January 2014 - 03:00 PM

Hello Aftertheteacups

 

Welcome to the forums, you've already been given great advice so I will just say welcome and keep posting.

 

Take care.


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#9 aftertheteacups

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Posted 06 January 2014 - 04:15 PM

Thank you, Shelley! I wish I could find that abstract. That is very interesting. So I guess it would be possible for me to have RP and capillary changes but never develop a full blown CTD. The only other thing I can hope is that if this is something bad, that since my symptoms are minimal at this point that it is in the 'early' stages. 

 

Has anyone ever looked at their capillaries using a magnifying glass or, like me, a phone app? Any idea how mine compare? The pics are in my comment previous to this one. 

 

And Amanda Thorpe, thank you for the support! I appreciate the info everyone has given me. 



#10 Joelf

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Posted 07 January 2014 - 09:17 AM

Hi Aftertheteacups,

 

I'm afraid I've been unable to find the actual abstract Shelley mentioned; however, if you check out her link, you'll find there is some interesting information about The Genetics of Scleroderma which I hope you'll find interesting.

 

I must admit I've never looked at my nailfold capillaries under a magnifying glass or a phone app; I did have a nailfold capillaroscopy when I went to The Royal Free Hospital, which consisted of having the base of my nails painted and then put under a rather natty little machine, which showed the damage to the nail capillaries.

 

Kind regards,


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