Limited Scleroderma To Aggresive
Posted 27 November 2006 - 06:53 AM
Thanks in advance!!
Posted 27 November 2006 - 07:27 AM
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!
Posted 27 November 2006 - 08:31 AM
Posted 27 November 2006 - 09:38 AM
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,
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 27 November 2006 - 09:57 AM
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 27 November 2006 - 10:43 AM
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.
Posted 28 November 2006 - 03:24 PM
Posted 30 November 2006 - 02:29 AM
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.
Posted 30 November 2006 - 07:05 AM
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
Posted 30 November 2006 - 05:19 PM
Posted 01 December 2006 - 02:19 AM
Posted 01 December 2006 - 02:45 AM
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.
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)
Posted 01 December 2006 - 03:00 AM
Thanks for letting us know. That is truly wonderful news!
Posted 01 December 2006 - 04:30 AM
Hooray! Good news is always the best. I hope this continues. Thanks for letting us know the results.
Posted 02 December 2006 - 03:44 PM
It is wonderful that you are concerned and supportive to your wife. The support will help her a lot. I'm sorry she is ill. I hope things get brighter for the both of you. I have localized scleroderma and pulmonary fibrosis, raynaud's, and JRA. I understand her frustration. Things will get better.