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Limited Scleroderma To Aggresive

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Hi I am new to this forum and have some questions to get better educated about Scleroderma. My wife was diagnosed with Limited Scleroderma about 10 years ago, before we met. She also has Raynauds and with that has really bad circulation. Her toes and fingers get really white then black very fast if we dont watch it. Other than some bloating of her stomach when she gets really stressed out, the scleroderma has been pretty limited. She has a pulmonary lung test and some other breathing tests done once a year and they seem to generally get a little worse each year. This year the main Pulmonary test went from a 97% to a 74% and now the doctor has her taking a Heart and lung Xray, and a CT scan of the chest tommorow. They say if it goes to an aggressive scleroderma we will have to go to the University of MN as they can't treat it locally. I guess my reason for posting is to see if anyone has heard of these same complications on here before. My wife is telling me she will not go on any medication as a steroid and something that starts with a P is being told to her as the next steps if tomorrows xray and ct scan dont go well.

 

Thanks in advance!!

Joe

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Hi Joe,

First of all I want to welcome you to sclero forums, but I'm sorry it's due to your wife being ill.

The unknowns about this illness can sometimes be a bit scary, so obtaining knowledge is the first step, so good for you for being here, and for being an advocate for your wife!

Here are a couple of links from our ISN site that may help you understand your concerns a bit better.

We are here for you anytime, so post away, ask questions, share your feelings, and if you're wife would like to post, that would be great too!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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One question I have is this. Does anyone else get a pimple like bump on your body, normally the face or neck and in the end it turns all red and is there forever. My wife calls these scleroderma bumps, but I think that is just her slang for it.

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Hey Joe,

I'm sorry to read about your wife and the problems she is having with scleroderma. Hopefully your having joined this forum will help provide an insight into what's happening. It's a great place for information and support.

 

Sweet has provided you with some great links that will give you information on the limited form of scleroderma as well as some of the problems associated with pulmonary involvement. With the drop in her PFT's. the doctor is probably suspecting either pulmonary hypertension or pulmonary fibrosis. I have a mild form of both and am currently being treated with Bosentan. The steroid that your wife is referring to is probably Prednisone and you can reassure her that Prednisone is not a treatment for lung problems associated with scleroderma.

 

In reference to the "scleroderma bumps", yes - I get these every once in a while. I currently have one on my check and left shoulder.

 

I'd like to join Sweet in welcoming you to the forum. Please post any questions you might have and also, please keep us informed of your wife's condition and test results.

 

Big Hugs to you both,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I get bumps on my chin and neck area. They itch so I apply cold packs over several days and they go away. I get them from eating too much sugar or dairy - inflammatory foods.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Joe,

 

I too want to welcome you to the Forums and applaud you for taking the time to get educated on what is happening with your wife. Good for you and lucky for her!

 

It looks like Sweet gave you a good place to start learning more about Limited Scleroderma and Lung involvement. Please let us know how her tests come out tomorrow and as you read more, let us know if you have questions.

 

I too get those bumps....but, until now, never associated it with the scleroderma. I always think it is a pimple and then I squeeze and pick and nothing happens but it gets red and big and stays for a very long time! I am glad you asked about it as now I know I am not alone.

 

Warm wishes,

Heidi

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Well we had the CT Scan on the chest this morning and a ultrasound on the chest area this afternoon. Obviously no word yet, but hopefully by Friday. Thanks everyone for your kind thoughts. I have learned a lot about Scleroderma the past two days.

Joe

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Hello Joe! I'm sorry your wife is dealing with this disease.

 

I also have limited scleroderma. I was glad to hear that your wife has been having screening tests to check her lungs every year. That's great! I hope the results from her CT scan are encouraging.

 

I don't think that lung issues mean her scleroderma is getting from "limited" to "diffuse" (or aggressive), it's just one of the possible complications of limited scleroderma.

 

Please keep us posted of her results.

 

Best,

 

Claudia

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Hi Joe,

 

YOu have some very good advice here. I was reading your post and my heart goes out to you and your wife. It is hard to deal with lung problems. I was wondering if your wife has looked into her bloating of the stomach. It might be associated with motility problems. Has she seen a gastro enterologist? I had slow motility and was bloated alot with pain occasionally. I treat it now and feel much better. Hope things get better. Susie54

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All the internal organ tests were negative, so most likely just a false alarm and just a bad day when taking the pulmonary test. Thank goodness. Thanks for all the info, thoughts and support!!

 

Joe

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That's great news Joe! I bet you guys are relieved. Have a great weekend!

 

Claudia

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Hi Joe,

Sorry I am jumping in late here. Welcome to our board! I do have ILD- interstitial lung disease or pulmonary fibrosis. So in the future if you have any additional questions, please feel free to ask!

 

I am happy to hear that her tests have come back normal. We are all here to help and give advice when we can. Please feel free to ask questions...as many as you need to and if you think it sounds strange ask anyway. Chances are we have heard it before or someone has the same issue.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi!

 

Thanks for letting us know. That is truly wonderful news!

 

Warm wishes,

Heidi

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Joe,

Hooray! Good news is always the best. I hope this continues. Thanks for letting us know the results.

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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