Practical Tips for the Newly Diagnosed

by Marian Mesker and Laurie Culbreth
(October 2005)

If you are newly diagnosed, it might be a good idea to take an advocate with you to your doctor appointments to take notes and remember details of what the doctor told you. Your advocate can jot down those strange and hard to pronounce words you will hear, words like eosinophils and immunosuppressive drugs. Go to the internet and look up these words and those found on your new lab work.

Before each follow-up appointment with your doctor, prepare your questions by writing them down. It might be an idea to write them down under two headings: important questions that have to be asked no matter what questions that could wait until another appointment

Observe your physician, too. Does he/she spend time to answer all your questions? How often does your physician treat CSS patients? Since this disease is so rare, do not hesitate to offer information you have found on the Internet. Try to gather as much information as you can. This will give you a sense of control! Do not be afraid to speak up. Bring research articles from the Internet to your appointment.

If you think your case is complicated and your doctor does not have much experience in treating CSS patients, you might consider going to a major medical center or large teaching hospital to find a specialist in vasculitis or an immunologist.

Visit Vasculitis-Patient.com to find some good ideas on “talking to your physician”.

Keep copies of all your medical records because every new physician you’ll see will need your medical history. (Usually there are a number of physicians involved in your treatment). You’ll also need them in case you will visit another doctor for a second opinion.

In the U.S. and in most European countries you have a legal right to the copies of your medical records. Do not, however, forget to sign release forms whenever you have new tests run so that all of your doctors involved in your treatment will be continually updated on your condition.

Keep a daily journal! This will help you track the disease symptoms and medication side effects that are otherwise easily forgotten. You could also write the questions to your doctor and the answers you got in this journal.

Go to the Johns Hopkins-Vasculitis Center website for a medication log (a form designed to help you keep track of your medication) a medical contact form (a form to put all your health care contact information in one place).

Persons on corticosteroids (most CSS patients) should have their medical condition clearly noted in their purses or wallets. It can be dangerous for people on steroids to miss the required dosage when, for example, they suddenly find themselves in a hospital and are unable to tell the hospital team about their medication.

If you have questions about your medication, try asking your pharmacist. He will have other customers on the same medication as you and know about their reactions to the medicine and the side-effects.

Look at www.rxlist.com for information on drugs and side effects. There is also a discussion board where you can read the experiences of other patients.

How many times should you do a blood/urine test? This would depend on your condition and on what your doctor decides. If, in between appointments, you don’t feel well or have symptoms, you should insist on extra blood/ urine tests.

Seek emotional support as well, from your family, friends or, if necessary, a psychologist. Do not be afraid to talk about your condition. If those around you understand your condition, they are more likely to understand your up and down days.

Join an online support group. 

Having a chronic illness does mean change: see if you can make changes to make your life easier. Minimize stress and think as positively as possible. Make the most of your energy. Don’t spoil it on useless things like worrying too much. Stress may be reduced simply by staying informed. Meanwhile, rejoice in the good days. Realize how precious each good day really is and make the best of those days.

Marian Mesker & Laurie Culbreth