Lupus 101 - Basic Facts, Tips & Resources

So you found our forum, but do you know about all the wonderful resources HealingWell.com has to offer? You have a number of places to start...

Visit the Lupus Resource Center

Take a moment to explore, we hope that you will stay awhile and visit HealingWell often.

The following link contains basic, easy to understand, info about Lupus, including symptoms and criteria for diagnosis.

/resources.lupus.org/collections/diagnosing-lupus

Lots more information about the Lupus Foundation and finding the chapter nearest you:

http://www.lupus.org

Post Edited By Moderator (Lynnwood) : 11/20/2017 1:13:04 PM (GMT-7)

TIPS for New Members. The tips topic was started by Emmi and the following are the tips that Emmi gathered after all the members had added their suggestions. Thanks again Emmi!!!

Emmi said:

Welcome! We are glad you found us. We hope you post often, ask questions, keep us up to date with your ups and downs, vent, share what you find helps you and we always appreciate a good laugh!
We combined our collective wisdom and put together the following ideas that help us manage, cope, and live as well as possible with a chronic illness. We hope you find them helpful.
(Please forgive any typos! They have been edited, but....)

* Keep a log of your symptoms and doctor visits including tests ordered, prescriptions ordered including dosage and doc' responses to your questions and his/her instructions to you

* Take a symptom report (list) and questions with you to all dr. visits

* Find ways to keep laughing--Especially at yourself!

* Be careful in the sun. Most of us are very sensitive to the sun. It can cause anything from a rash to a flare of symptoms. Wear sunscreen and cover up with long sleeves and a hat or even an umbrella. Stay out of the sun from 10 am o 4 pm. For some of us, even a little sun exposure can cause trouble.

* If you are waiting for a diagnosis and you get a rash or mouth sore, take a picture of it to bring to the dr. It can help with a diagnosis.

* Learn all you can about lupus. It will help you make the most of you dr. visits and will help you spot trouble a lot sooner.

* Be proactive in you treatment. Ask a lot of questions. Find out what labs are being done and what each of the labs mean. Do the same with your meds - know which meds you are on and why.

* Trust yourself - you live in your body and you are the expert on your body. If you have a dr. who is brushing off your symptoms or is not listening to you, it may be time to look for another doctor. I believe you get the best medical care when you and your doctor can act as a team in your health care.

* The suggestion of taking pictures of sores and rashes has helped me a lot; I am able to show my rheumy rashes, joint swelling and mouth sores that may not be present when I have my appointments.

* Got to dr. appointments with no makeup on...don't even use moisturizer. Make sure you are clean and neat but don't fuss with your hair and skip the creme rinse that morning. Your hair and skin give the docs some clues about your health, so you don't want to enhance them for you dr. appointments.

* From time to time, take someone who sees/interacts with you on a daily basis to the doctor with you. Have them describe their impressions of how you are doing with your doctor. It's good the the dr. to get another view of what's going on with us.

* Make lists and take them with you.

* If offered treatment but no diagnosis take the treatment and be glad that a dr. is willing t treat without a diagnosis.

* Once you get medication follow the dosage schedule religiously never ever ever stop your medication or skip doses.

* If a doctor treats you poorly or doesn't listen find a new one.

* Serious illness causes lots of changes, not just physical, but emotional, spiritual and even or personalities. Take the time and effort to really get to know the "you" that you are becoming.

* Feelings of guilt are normal. They don't last forever, so be patient until they subside.

* Mourning the person we used to be, and were going to be are also normal. In a way living with a chronic illness is in a way being "reborn" as a slightly different person.

* Most importantly, live each day to the fullest, and love just as fiercely.

* Trust your instincts. You know your body better than anyone.

* Find a rheumy who cares, listens and explains and, most of all, believes you. don't settle for just any doctor because there's one out there who will be a good fit for you.

* If you think you have Lupus, or any other disease for that matter, don't stop till you get a diagnosis.

* When you take your list of symptoms to your rheumy, list every single symptom you have, whether or not you think it's related to your suspected lupus. I used to tell my doc only about symptoms I thought were related to lupus, only to realize that other medical problems or symptoms I had were also related, but I didn't know it. So let the doctor sift through all that stuff...they're the experts. Bottom Line: the more your rheumy knows about you the better they'll be able to provide a diagnosis.

* Take breaks and quick naps. These work wonders!

* Drink lots of water and cut out refined sugar and salt as much as possible.

* Cranberry supplements have worked really well for me and all my blood work, urine work.

* Husbands don't mind hearing about lupus, but not all the time. It reminds them you're sick and they want to fix you and they can't. (Men are from Mars, women are from Venus, chapter 2).

* Have a good sense of humor about things -- but in our case DO sweat the small stuff because it could be a sign of a bigger issue.

* I always look at it like it could be worse. Take what you have and try to look at it as a blessing. Sometimes it is not easy.

* List what you still have. Example: sight. Even if you can't go outside, you can see the birds, flowers, etc.

* Whatever God, Goddess, Buddha you believe in, a Thank You would be nice.

*Try and not anticipate. Take each day and challenge as it comes. I hear too many on this forum and other forums who spend too much time worrying. Take charge of your health care, be your own strong advocate with the docs, and try to enjoy each day. Don't equate every pain or symptom with some dire new disease. That is hard to do and you should not ignore serious and persistent symptoms but I think too many dwell on every little tic. I am trying to manage my health situation but also return to a normal, enjoyable existence. If I am going to get sick again, then I do not want to waste a day in worry and distress. If I continue to improve then I still have not wasted a day in distress. (this point quoted from Bsime.)

How to get the most out of a short Dr. visit.

Symptom List

This sheet should be typed carefully on your computer and then updated for each appointment. It takes a fair bit of time to make the first one, but then you can just update it for each following Doctor appointment.

You'll always take two copies with you, so you can hand one to your Doctor. Most doctors love it because they can get caught up very quickly with this list and they will usually keep it with your file so they don't have to re-write every item. You can keep your extra copy in your wallet in case of an emergency, you'll have all your medical info handy.

-----------------
Date

Your Name
Address
Telephone Number

PCP Name
Address
Telephone Number

List Each Doctor
Address
Telephone Number

Allergies:
List all meds you allergic to

Prescription Meds: list each med and dose . . . spell correctly!! . . . example:
Hydroxychloroquine Sulfate 200mg 2/day
Ibuprofen 600 mg 3-4x/day
Synthroid 50 mg/day
Panlor SS 32mg as needed

OTC and Supplements list each item and the strength and dose


What I want Dr. _____ to do for me today:
Summarize

Symptoms since last visit:

make a complete list of ALL current symptoms



Questions:

List your questions here

_____________________

Post Edited By Moderator (Lynnwood) : 12/10/2014 8:11:10 PM (GMT-7)

Plaquenil and Your Eyes

Here is an eye test that is easy for all of us to do online, without going to the doctor right away. Scroll down after you go to this site until a graph shows up with a dot in the center. Look at the dot with one eye at a time, and if the lines change, then you might need to see the doctor. Instructions & more information is available on the page.

Check Your Eyes

Post Edited (Lynnwood) : 3/26/2010 6:04:31 PM (GMT-6)

Here is what Johns Hopkins (Maryland, USA) has to say about a positive ANA.

"A positive ANA result means that you have a higher than normal concentration of these antibodies. This is one of the tools in diagnosing lupus as well as several other autoimmune diseases, so a positive result may be related to lupus or to another disease. Or you may simply have a higher than normal concentration of these auto-antibodies that may not have any impact on your health. Even among people with lupus, ANA results can vary widely; one person can be in remission at a certain titer of ANA while another can be extremely ill at the same titer. Autoimmune diseases often have a systemic effect on the body and are very complex by nature. Your healthcare provider will interpret what the test results mean for you and may need to compare your test results as well as the severity of your symptoms over a period of time in order to make a definitive diagnosis."

Typically, four or more of the following eleven criteria must be present to make a diagnosis of Systemic Lupus.

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (non-erosive) in two or more joints, along with tenderness, swelling, or effusion. With non-erosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurological disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.

Post Edited (Lynnwood) : 1/24/2018 11:02:18 AM (GMT-7)

I can't believe this hasn't been added to this thread before... the very BEST Lupus book available is

"The Lupus Book: A Guide for Patients and Their Families", by Dr. Daniel Wallace.

The book is often referred to informally as "the Lupus Bible" by patients and Drs alike. He is the premier SLE expert in the USA, and has also written a version for Clinicians. I believe he's written something about Sjogren's Syndrome as well.