Posted 02 January 2008 - 09:03 AM
I'm new to this site. After preganancy about 4 years ago, I started getting accelerating symptoms of Scleroderma (before that I had reynaud's and puffy hands, but few other symptoms).
Now, fingertips and cuticles have so many sores, I can barely feel anything, my lung capacity has started to diminish and I get bouts of acid reflux almost everyday---in addition to general knee stiffness and puffiness and weakness.
I go to my rheumatologist and he confirms that "yup, it's progressing". He suggested that I consider being part of the clinical trial for Gleevac, but I didn't qualify based on a better than required skin score. I am about to go see a pulimanologist.
What could/should I be doing to at least minimize symptoms.
Posted 02 January 2008 - 09:33 AM
Please let us know how your visit to the pulmonologist goes. Have you seen a scleroderma specialist or just a regular rheumatologist?
One of the best things you can do in the winter season is to keep your Raynaud's at bay. Here is a link on Raynaud's rewarming tips from our Medical web pages. Hopefully others will join in to give you further advice on your questions. Also feel free to poke around, read and comment wherever you can.
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Posted 02 January 2008 - 09:50 AM
Hi. I'm glad you found us. This is a great place to learn; share ideas, symptoms and worries.
I know it can be overwhelming when you body is progressing and doing things and you don't know what to do to shop it. Finding a scleroderma specialist, like jefa said is a great idea. Also check out other clinical trials I'm looking to be apart of one at Northwestern Hospital in Chicago.
You should ask about a vasolidator or nitro bid cream for your fingers. These meds will help open the vessels in your fingers increasing circulation and lessening ulcers. Revatio is also good for getting rid of ulcers.
For heartburn I use nexium, but there are some good OTC pills too. Try eating less fried foods, chocolate, caffeine; not eating 3 hours before you sleep and elevating your head when you sleep. Some find sleeping sitting up helps.
Seeing a pulmonologist is a very good idea. They may suggest tests like a chest x-ray, CT scan, a pulmonary function test (pft) and labs. I get labs done 2x/month but I'm pretty poorly. Hopefully you'll be less often.
I think the most important things are to get educated, take care of yourself and listen to your body's needs. It might be a good idea to keep your own set of records. It makes it a lot easier communicating between doctors if you get copies of all your tests.
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 02 January 2008 - 10:42 AM
It sounds like you are on the right track with a team of knowledgable doctors.
Posted 02 January 2008 - 12:38 PM
Posted 02 January 2008 - 01:09 PM
I'm so glad you've joined the Sclero Forums and our sclero family. I'm really sorry to hear that you are having progression with the disease. One of the things I can suggest is to really pace yourself. Look at your routine and see if there is anything you can do to reduce stress in order to rest more.
Looking forward to knowing you better!
Posted 02 January 2008 - 01:15 PM
As mentioned above, there are many treatments for Raynauds. I had a horrible bout with it after a stem cell transplant for lymphoma. Adalat (a calcium channel blocker) and especially Mini-press (Prazosin) helped a lot. I've never had much luck with nitro cream, but others have. Some get relief from Viagra or Cialis. Different drugs work for different people, so you should be able to get some relief.
Posted 02 January 2008 - 01:22 PM
You definately need a scleroderma specialist that can help you, not just sit by and say it's progressing! There are many trials out there and there are always new one's popping up. If you can, get to a true specialist and look at the links that were previously provided for trials and other tips!
Don't give up, you'll find someone to help!
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Posted 11 January 2008 - 08:22 AM
peanut gave excellent suggestions and I hope that you are able to get the symptoms you are experiencing... under control.
Keep us posted on how you are doing?