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Biomarker for Diffuse Scleroderma skin has been discovered!


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Swollen Hands, Raynauds, Digital Ulcers, Sensitive skin


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#1 gigi08

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Posted 23 October 2013 - 12:55 PM

Hi, My name is Gloria and I haven't been on here in a long time.  I will type as much as I can but it is very hard for me to type.  I was diagnosed with scleroderma approximately 5 years ago.  I had lots and lots of questions.  The things leveled out for me so I just learned to live with what I knew.  Around December of 2012 my hands started swelling along with my legs.  Now, 10 months later I have experienced digital ulcers and still struggling with them, skin getting much tighter from finger tips to elbows, skin sensitivity from wrist to elbows,  VERY dry knuckles and skin, bones in right arm feel like their twisting when I move them and there's a spot on my wrist that is very tender.  I wasn't going to write this but my husband has urged me several times to see if there is anyone else that experiences this and to see what you do.  I am going to Johns Hopkins on November 5th because I feel it's time I see a scleroderma specialist.  Any suggestions would be helpful.


Gigi08

#2 Joelf

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Posted 23 October 2013 - 09:55 PM

Hi Gloria,

 

Although it's great to hear from you again, I'm very sorry that it's because your Scleroderma symptoms have worsened.

 

I'm afraid that although I love telling my medical team how to do their jobs, I actually have no medical training, but I do understand that even after a period of stability, Scleroderma can flare up causing more tightening skin and digital ulcers. I've included a couple of links to give you some more information; thankfully I only have minimal skin involvement and don't suffer with digital ulcers, so I can't advise you from my own experience but I know we have other members that can offer you first hand help and advice.

 

It's certainly a good thing that you're seeing a Scleroderma specialist on 5th November and I do hope that he will be able to help you and suggest some treatment to improve things for you. Meanwhile I've included links to our medical pages on Treatments for Digital Ulcers: Surgical and Topical

 

Please do update us when you've had your specialist appointment.

 

Kind regards,


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#3 Amanda Thorpe

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Posted 24 October 2013 - 06:13 AM

Hello Gloria,

 

I am very glad you took your husband's advice and came back for a visit although I understand your reluctance in doing so.

 

It's the nature of scleroderma to wax and wane, it gets worse, it gets better, it becomes inactive, it gets worse, it gets better....and so it goes. What I don't understand is why you have not been monitored by your scleroderma expert. Every year for the first five years you should have a lung function test and an ECHO to check for internal organ involvement and I would also expect your rheumatologist to review you at least once a year for at least the first five years and thereafter as necessary.

 

When first ill I had tight skin all over my hands and arms and remember a bone twisting sensation caused, I think, by the skin being tight. I also had hypersensitivity on areas of skin on my hands and wrists, now the hypersensitivity is just on the underside of my wrists which is also where I get ulcers. Yes, ulcers on my wrists because the skin breaks down.

 

I also have ulcers on my feet that have been there for years and are also caused by the skin breaking down rather than poor blood flow, the cause of your digital ulcers if you have Raynaud's. Have a read of treatments for digital ulcers as I am guessing Johns Hopkins will suggest a course of Iloprost for them. Iloprost helps with blood flow and the better the blood flow the less likely ulcers are going to be for you, and your Raynaud's should also improve. I had Iloprost once and although I do not have bad Raynaud's by any means it made a marked difference to how cold my fingers felt or didn't!

 

Anyways seeing your expert again is a very good idea as is coming back here and I do hope you stick around especially as we'll all want to know how your upcoming visit goes.

 

Take care.


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#4 Shelley Ensz

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Posted 24 October 2013 - 12:47 PM

Hi Gloria,

 

Welcome back to Sclero Forums, although I'm sorry its because you have worsening symptoms.  You are absolutely doing the right thing by seeing a scleroderma expert at Johns Hopkins.  Please stay in touch this time around and let us know how things go.

 

For other people, brand new to scleroderma, please make a mental note that the best time to see a scleroderma expert is right away, as soon as you have it or you and/or your medical team strongly suspect it.  They are very helpful for diagnosing, as well as overseeing your care by your local medical team (if you have to travel to see a scleroderma expert, as most of us do.)  Proper care early on may help avoid or minimize some complications or disease progression. Since it can often take months to get in for a first appointment (but often faster thereafter), it is very helpful to get registered and seen by a scleroderma expert before you run into any really major problems or experience a sudden disease progression. Obviously, this situation caught Gigi unaware and unprepared, but I am pretty sure she would now be among the very first to advise you to start the ball rolling now, today, for a scleroderma expert consultation. And especially if you have dawdled about it along the way, this is as good a day and time as any to get to it, isn't it?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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.

#5 debonair susie

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Posted 01 November 2013 - 08:51 AM

Hi Gloria! It's wonderful to see your message here, but like all of us, I'm sorry you're experiencing what you are.

 

May I ask...Did the doc who diagnosed you, order base-line testings for you, upon diagnosis? I ask because it's VERY helpful to your doc(s) to follow your disease and make better (informed) determinations, where your helath is concerned. If they HAVE been done...GREAT!! If not, please DO ask for them.

 

Now...it's been SO long since you and I have chatted, I can't remember WHAT all you and I shared! :P Anyway, like Amanda, I  too, had the tightening of the skin. As a matter of fact, it effected the majority of my derma, which DID eventually relax (after 8 years, in MY case). However, I could not bend my knees, except to walk on a flat surface; stairs were a great challenge, as I had to turn sideways to negotiate them, during that time; ALL of my joints were effected by the tautness.As Amanda mentioned, the sensitivity of the skin, made me/us painfully aware how important it was to be Ohhhh so careful around everything/everyone, so as not to further the pain. In addition to that I was not only dealing with THAT, but also the dramatic changes with my hands, which was a result of not only the Scleroderma (fingertips VERY sensitve), but also the Raynauds, along with Psoriatic Arthritis (PsA). Despite those rough years, I made it through and was elated when I was able to (once again) bend all joints!

 

To date though, I've been fortunate, in that I've not experienced finger ulcers, so I HOPE that you are able to glean helpful information from the links provided you. Being a long-time member of the Scleroderma Forums, you know how awesome folks (here) are about sharing their experiences and how easy it is to locate information!

 

(Something I have learned from those with finger ulcers: Protecting those fingertips is paramount, as you've (personally) discovered; With fingertip sensitivity, I used a pencil (eraser end) to type, which really solved that for me) ;)

 

Please DO keep us in the loop, as to how you are doing and what you find out, along the way? SOOO many of us care :emoticons-i-care: and sure hope your situation improves sooner, rather than later! :emoticon-hug:

Thank you so much for posting and please take care.


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Susie Kraft
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#6 Amanda Thorpe

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Posted 01 November 2013 - 10:36 AM

Hello Susie

 

Long time no hear, how are you doing? I hope you'll post and fill us in!

 

Take care.


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#7 Sweet

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Posted 01 November 2013 - 01:27 PM

Hi Gloria,

 

I'm so sorry you are finding yourself in the possible active stage of your disease. I'm really happy to hear you're going to see a specialist. I personally have never had swelling or ulcers (crossing my fingers), but my heart goes out to you. I look forward to hearing what the doctor has to say. Hang in there.  :emoticon-hug:


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Pamela
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#8 gigi08

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Posted 02 December 2013 - 09:00 AM

Just an update on my condition. I went to Johns Hopkins and that was the best step I have taken. I was very impressed with the doctors. I had and they spent around 5 hrs. with me. My diagnosis was changed from limited to diffuse. I have tightening all over now. They put me on cellcept and I'm to try it for 3 months and then I return for my next visit. They said the first thing I should notice is the itchiness going away. I've been on it for a little over 3 weeks and I'm not seeing a change yet but I'll give it time. The skin tightening should start getting better too. I am getting extremely tired and don't really feel like doing anything so I just push myself. Tiredness has always been a problem with me. The ulcers are healing compared to what they were like before but that's from the Ravatio my rheumatologist put me on. I still can't stand things touching my arms. It feels like I'm in insulation and it's jagging me. That should clear up too with the cellcept. The rating on my arms was 3+. In the 5 years I have gone to my rheumatologist she never checked my skin from head to toe. They did. I did have my pulmonary function test and CT chest scan on Wednesday and I see my pulmonologist tomorrow. Thanks for all the concerns.


Gigi08

#9 Shelley Ensz

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Posted 02 December 2013 - 07:43 PM

Hi Gloria,

 

Thank you for the update! 

 

I am delighted that you got in to Johns Hopkins scleroderma center and that you have received such good care and attention there.  I hope the cellcept helps to turn things around for you.  I'm sure you're wishing that you went there even earlier, aren't you?

 

Let us know how your pulmonary appointment goes, okay?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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.

#10 Joelf

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Posted 02 December 2013 - 11:12 PM

Hi Gloria,

 

Thanks for letting us have your update.

 

I'm so pleased to hear that you've had good treatment from Johns Hopkins Scleroderma centre; it makes all the difference to have a medical team in whom you can have confidence.

 

I hope the appointment with your pulmonologist goes well and please do let us know the results of your pulmonary function test and CT chest scan.

 

Kind regards,


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#11 amberjolie

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Posted 09 December 2013 - 06:57 PM

Hi Gloria,

 

I'm not on here often, but saw your post. I'm glad you were able to see someone who obviously will help you as much as they can.

 

I also have diffuse.  It didn't get quite as severe as what you're experiencing, but my skin was quite tight on my hands and arms and chest.  I've been on methotrexate for awhile now (can't remember when I started it, maybe a year or year and a half ago).  My skin is softening, maybe from the methotrexate, maybe on its own.  Also, I've had the digital ulcers, and I find what worked for me was nitroglycerin patches.  I would use them when I had an active ulcer, which seemed to prevent them from getting too big, and helped them heal faster.  I haven't had a digital ulcer for awhile (maybe the meds, maybe remission?), but it is getting to winter now, so we'll see what happens.

 

I had heard that cellcept is also a good medication (I believe that was one my rheumatologist wanted to try for me, but for various reasons I haven't yet tried it).

 

I hope the medication works well for you and you get some relief of your symptoms!



#12 Amanda Thorpe

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Posted 10 December 2013 - 02:10 PM

Hello Gloria

 

You prove the point we always make about scleroderma experts being preferred to run of the mill rheumatologists.

 

Cellcept is good stuff and I am sure it will help even more but in my experience does nothing for itching, you want to try an antihistamine, I take hydroxyzine, or a low dose steroid, low like 5mg-7.5mg administered by your scleroderma expert.

 

I had areas of hypersensitive skin that went with time but if it's a problem talk to your expert, don't suffer in silence.

 

Take care and keep posting.


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#13 gigi08

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Posted 15 December 2013 - 07:00 PM

@Shelley - yes, I sure do wish I would have gone there so much sooner.  I may not be suffering as I am now.

@Amanda - thanks for the advice.  I have been on 8 mg. of methoprednisolone for about 5 years.  My next visit at Johns Hopkins they are going to start getting me off of it and I have no problem with that.

@AmberJolie I hope you don't get the ulcers back.  I know how painful they are.  Mine still hasn't cleared up.  They told me to try to avoid trauma to the hands ( how hard is that to do)?  I am on 2 medicines for the raynauds.  I actually got my ulcers in the spring. Taking a long time for the to clear up.

@ everyone.  Had my apt. with my pulmonary Dr. Lungs look good. A little asthma which we knew.  Did see something on the CT scan with the esophagus and is sending me to my Gastro Dr. Said he'd probably do a scope to see what's going on.  Said it could be from the Sclero or Acid Reflux.  On top of all this, my foot has been hurting me for about 2 - 3 months so I finally had it x-rayed.  Have a fracture.  See that Dr. tomorrow. 

I am one of those who really have a hard time dealing with all this because lately I have felt like doing nothing and I feel so guilty doing nothing.  I've lost my energy.

 

So Thankful for this forum and friends.


Gigi08

#14 Amanda Thorpe

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Posted 20 December 2013 - 12:06 PM

Hello Gigi

 

Have a look at our videos, in particular scleroderma and fatigue (would give you the link but a glitch prevents me!) and see my advice when it comes to being fatigued and that's to just say "NO!"

 

Fatigue is an integral part of scleroderma, it won't go away, you can't work round it or through it, you can only accommodate it with sleep and rest. I can sleep 18 hours a day and more when I am having a major fatigue fest. I know that after the upcoming Holiday I will be spending many days in bed and prior to it am on house arrest so that I don't go out and tire myself out. Is it fair? No. Is it a nuisance? Yes. Is it part of life with scleroderma? Yes.

 

Do not feel guilty else you're in real trouble because fatigue will never go away, you have to learn to manage it both practically and emotionally as will others in your life. You can't do what you once did and that's just too bad if someone else doesn't like is, I mean really, do they think it's a barrel of laughs for you?

 

Take care.


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