how to manage scleroderma?

Living well with scleroderma.

A person can live a NORMAL life with Scleroderma provided he/she follows Doctor’s advice, medication and Do’s and Don’ts as mentioned below

Managing Scleroderma

Scleroderma India does not prescribe any medications as that is the work of experts . We only offer suggestions, which in no way are a substitute for professional or medical advice. A patient should not attempt any treatment option without first consulting a Rheumatologist.

We are listing out measures, which a patient can take to manage the symptoms of scleroderma. Due to the complex nature of the disease, the response to each treatment will differ from person to person.

  • Get adequate sleep
  • Avoid Alcohol and Smoking
  • Eat frequent small meals, instead of having 2-3 big meals in the day.
  • Try to Eliminate Processed foods from your diet.
  • Try to Limit sugar intake.
  • Caffeine consumption should be either avoided or limited to bare minimum.
  • Limit sodium intake in your diet, keep a check on salty foods.
  • Avoid fried foods.
  • Try to avoid stress as much as possible.
  • Exercise & Meditate

Travelling Tips

This is not a Comprehensive Guide, instead few pointers. Please take the advice which is appropriate for you. 

  • Consult your specialist before you plan any trip, Local or Overseas.
  • Please get a thorough examination and all your Tests done recommended by Doctor to enable you for travelling safely.
  • Always keep the List of Medicines you are taking handy.
  • Check with your Doctor about any Emergency Medicines or Antibiotics you might want to take during your travel.
  • Keep all your Medicines in Stock while travelling.
  • Travel slowly and plan stopovers in between to give your body a little rest time.
  • Air Conditioners can be harsh in Hotels/ Flights. Plan your travel with lots of the layers of clothing to prevent yourself from Raynaud’s.
  • Plan to stay in a Hotel which is in the middle of the city, so that you can get back during the day too to take proper Rest.
  • Avoid packaged food.
  • If you have difficulty Walking, do not hesitate in asking help from Hotel/Airlines/Taxi Operators for Wheelchair Assistance.
  • Always keep your necessary and emergency medicines handy while travelling and moving out of Hotel.
  • If you are on Oxygen, Talk to the Hotel/ Taxi Service in advance about Travelling with Oxygen and make any advance arrangements. 

Do's and Don’ts

  • Eat in  small portions.
  • Eat dinner at least 3 hours before you go to bed  .
  • Elevate your bed ( Head side) using couple of bricks. or use multiple pillows or a wedge pillow, It would help not only in reflux but also in reducing dyspnea and cough at night.
  •  If you have dilated oesophagus ,avoid consuming liquids like Buttermilk and  juices at night.
  • Do not bend for at least for 2 hours after consuming meals.
  • Sleeping on your left side helps in managing reflux in the night.
  • Do not expose yourself to cold temperature. While working with water try using warm water and rubber gloves.
  • Keep yourself warm, wear gloves, mittens, socks as Winter starts approaching.
  • Avoid stress as it can trigger Raynauds.
  • Exercise Regularly
  • Avoid Smoking as it constricts Blood Vessel and increases chances of Ulcers.
  • Keep the ulcers as dry as possible.
  • Consult your Doctor timely to avoid the aggravation of Ulcers.
  • If hands start turning red/blue /purple , immediately use heating pad or room heater to warm your hands/feet up.
  • Keep yourself warm when you travel by flights, AC buses or train.
  • We recommend you to wear hand gloves and socks throughout the year whenever you visit malls, movie theatres and restaurants.

Exercise, medicines and food all play an equal role in managing the disease none is a substitute for another.

  • Exercise keeps your body flexible, improves circulation and relieves stiffness/joint pains associated with the disease.
  • It increases the flow of blood thereby reducing the chances of Ulcers due to Raynaud’s.
  • Helps in achieving and maintaining a healthy body weight. Importance of Exercising in Scleroderma and other associated conditions
  • You can start with simple exercises like PT, Walking, Climbing stairs and increase the intensity gradually. (Do not bend if you have GERD, Dilated oesophagus or experience hyper acidity)
  • Avoid overexertion. Stop if you experience dyspnea.
  • Use soft nasal cannula to avoid development of ulcers in nose.
  • Petroleum jelly can be applied on cannula to reduce friction with nose.
  • A long nasal cannula can be used to walk freely and easily in home.
  • Try using oxygen while performing tasks like bathing, changing clothes and eating as well.

We do not advocate the usage of alternate mediums of treatment due to the following concerns

  • Delay in standard treatment can worsen the condition.
  • Minimal Scientific Research.
  • Not useful in Emergency cases.
  • There are no regulations associated with these.
  • Scleroderma has no cure ,it is a progressive disease which can be managed. Allopathy can minimize the symptoms and slow down the progression of disease.
  •  Do not fall prey to any person who claims to cure scleroderma using any other form of medicine. Hence we request you to trust and  stick to your Doctor’s advice and guidance.
  • Pulmonary Rehab helps people with Lung Diseases like COPD, ILD and Fibrosis live and breathe better.
  • Patients are monitored and taught to exercise safely by paying attention to their breathing and Oxygen Levels.
  • PR reduces the effects of inactivity and deconditioning, resulting in less shortness of breath and an increased ability to exercise.
  • PR can be done online as well as offline, however it is ideal to do Rehab with the expert in person.
  • While Pulmonary Rehab can not reverse the damage done, it can definitely slower the progression of the scarring of the lungs.
  • Avoid sugary food and sugary drinks.
  • Brush your teeth after every meal.
  • Sip water to avoid dry mouth.
  • Get your teeth examined twice a year.
  • Topical fluoride strengthens teeth by replacing calcium on the surface of teeth. There are fluoride rinses available and prescription strength fluoride gels and toothpastes that make teeth even more resistant to decay.
  • Regular professional applications of fluoride varnish are a relatively convenient and inexpensive way to ensure better dental health. Ask your dentist whether or not a prescription fluoride regimen is appropriate for you.

Scleroderma does not just affect your body. It also affects your mind. Living with a chronic, incurable condition takes its toll on your psychological health. Living with Scleroderma can have a negative influence on how you feel about yourself and your relationships. Like everything else we’ve covered, learning more about problems and the ways they can be managed can reduce the stress you feel from Scleroderma.

  • Do not delay, do it now. Often, just talking with an understanding person or health professional will be enough to help you through this mood. CALL your Mental Health Centre, Doctor, a friend, a counsellor and seek help.
  •  Don’t drink Alcohol to feel better.
  • Make Plans and carry them.
  • Join a group, become a Volunteer and keep yourself busy.

How is scleroderma treated?

Currently, there is no cure for scleroderma. Instead, treatment is directed at controlling and managing the symptoms. Because scleroderma can have many symptoms, a combination of approaches is often needed to treat and manage the disease effectively.