The American College of Rheumatology recommends the following tests:
PFTs (Pulmonary Function Tests)
ECHO (echocardiogram of the heart)
HRCT (High resolution CT scan of the lungs) A regular Xray will not show early signs of ILD(Interstitial Lung Disease)
You should get a baseline test for all of the above.
ACR Paper on HRCT: https://pubmed.ncbi.nlm.nih.gov/38973714/#:~:text=For%20screening%20people%20with%20these,radiography%2C%20ambulatory%20desaturation%20testing%2C%20or
There are specific Scleroderma Centers with doctors who are experts in Scleroderma. You might want to consider getting a 2nd opinion from one of these centers. In Northern California, where our support group is located, there are 2 centers: Stanford and UCSF
. Breathing/Out of Breathe - lung issues. Contact your doctor.
. Blood Pressure - extreme spikes in blood pressure might be a sign of kidney failure. Do not ignore this. Go to the Emergency Department.
. White or blue fingers - this could be a sign of Raynaud's Phenomenon. Do not ignore this. White fingers is a sign that blood is not getting to your tissues. Have this checked immediately.
. Fatigue - Fatigue can be a huge part of Scleroderma and is extremely frustrating. It is also a symptom.
. Inflammation - Scleroderma is an auto-immune and a vascular disease. Monitor inflammation in your hands, feet and other parts of your body.
. When in doubt, contact your doctor.
PGE - Apply for a Medical Baseline
DMV - apply for a Handicap Placard
https://www.dmv.ca.gov/portal/dmv-virtual-office/dppp-application/
. Journal - keep a journal of your symptoms, how you feel, what medicines you are taking & whether or not they are helping.
. Questions for your doctor appointments: Write down questions you have for your doctor and take with you to your appointments. Note the most important ones. It is easy to forget to ask questions at your appointment. Keep a running list of questions and write them down as you think of them.
Your time with the doctor is limited and you want to make the most of your time.
. Elevate the head of your bed. Most people have some type of GERD (gastric esophageal disease) or reflux. Elevating the head of your bed helps decrease reflux. You can purchase "risers" or use wood. Risers are better than elevating using pillows, because pillows cause a kink in your abdomen.
. Exercise - Exercise as much as you can. Walking is always good.
. Stretching - It is important to keep your muscles and joints flexible. Stretching, yoga, pilates can help with this. Be sure you do stretching exercises on your hand to maintain mobility of your fingers. This is very important.
. Scleroderma is very active during the first 5 years of the disease.
. No two people have exactly the same symptoms and you probably won't get all of the symptoms. Scleroderma is a very individualized disease.
. Let your friends and family help you! They often feel helpless, so let them do things for you; it makes them feel good and helps you out as well.
. This is a good time to learn to say NO to volunteering and extra tasks. You need to take care of yourself.
. Don't set your daily task list too high. It is better to exceed your expectations. Anything above that is a bonus. That makes you feel good.
. Be your own Advocate! You need to take an active part in the management of your care. If you are not able to speak up for yourself, get someone who can. Take them with you to your appointments to advocate for you and to listen carefully to what your doctor says. It is not easy to comprehend everything, especially when this is all new to you.
. Be kind to yourself! Do what you can do and try to remain positive. You didn't cause this. Acknowledge that you have Scleroderma and move forward in getting the best treatment you can get.
. Join a Support Group! Patients have great ideas on how to manage Scleroderma and can share their thoughts. Since this is a rare disease, it is nice to talk to someone else who has it and get their input.
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