Which advice would you give to someone who has just been diagnosed with Relapsing Polychondritis?

Find good doctors who are knowledgeable and care and are willing to listen. Hang in there and find out as much as possible about the disease as you can. Join a support group.

4/26/17 by Freya 1000

Don't panic. Now that you have a diagnosis you can begin to work with your docs to slow the progression of the disease.

4/27/17 by Lisa Matthews (Lissy) 4800

To read a lot about RP and take good advise for medication. Need to find the proper Dr which can trust as to be able to discuss all problems arising

4/27/17 by Laoura 2050

Find a good team of doctors. Be your own advocate. Be aware that you will know more about your disease than most doctors. Join the Relapsing Polychondritis support Facebook page. Be prepared for set backs. You will start full of hope that you will have the disease under control and you will try to look for triggers that cause a flare. There is no rhyme or reason as to why or when a flare will happen. Set backs will occur. Just get back up and keep going.

8/9/17 by Louise C 1450

See a Rheumatologist who IS familiar asap. Don't get depressed or expect a death sentence!

8/14/17 by Susan 2000

Finding the right Rheumatologist is been most important to me. The first one I had agreed I had RP, but he didn't take much interest in it. So after a year, I let him go. I found another one who said it was a privilege for him to take care of me. He prays for me in his office. We are in one accord. I can write to him in my Patient Portal and tell him what is going on between visits. I did that yesterday and he is having me come in this afternoon. I feel like I am special to him because I am the only patient he has with RP at this time. That's the way it should be!

9/1/17 by Diane 2050

It doesn’t always effect everyone as severely as others. Try and be positive and decrease life stressors.

6/11/19 by Brooketaylornp@gmail.com 1000

Get a good RA doctor that has other RP patients. Get great insurance.

6/12/19 by Tmrcarlson 3550

Keep calm. When you start reading and researching relapsing polychondritis as we all do when we are diagnosed you will freak out. Keep calm and start by getting yourself a team of specialists. Start with your general practitioner and get a referral to a rheumatologist or immunologist. From there you will probably see a neurologist, dermatologist, respiratory specialist and ENT. This is to establish baselines and get treatment. Join a social media group to connect with others who are diagnosed as they can help and support you. Be your own advocate. If it doesn’t seem right or your doctor isn’t helping you speak up and move on to find a doctor who has your back.

6/12/19 by Kaz 3000

Much has already been said. Find a good Rheumatologist, research low inflammation diets and makes some healthy changes, do your best to remain optimistic. Don't be your disease. Don't be a reaction to your disease. Be someone who has the disease and does their best to live life fully, but who also happens to have RP. My grandfather had coronary artery disease. Over a period of around 20 years he had multiple procedures, and ultimately open heart surgery. He was reasonable certain that his heart disease would be what took his life. He died after a relatively short fight against cancer of the lymph nodes (just 3 months from diagnosis to death). He said he never would have thought that it would be cancer that would kill him. A couple of months after I was diagnosed, when flare after flare were still popping up in my ears, his words came back to me. Disease of any kind sucks. I mean, we have the contrary to ease, after all. But, we can't know our final day until it is upon us, and even then sometimes we don't see it coming. Do not let RP drag you down. Easier said than done, especially if your flares aren't easily managed, or if if you aren't tolerating a medication and have to stop it. If you have things that bring you joy in life, keep doing them. Do them more! If you can't because RP has physically gotten in the way, seek out other things that bring you joy! And most importantly, don't give up! Strides are being made in medicine as we speak! You never know what tomorrow will reveal!

6/17/19 by Jennifer 100

Try to find a knowledgeable rheumatologist. Join a support group, and learn everything you can about rp and become your own advocate

12/30/19 by Leanne 2500

Record everything, take photos, hang in there, meds take a long time before they are fully effective. Join support groups, speak to your family and doctors.

12/30/19 by Carrie 3050

Do not panic. I was given one year to live with extremely poor quality of life the last 6 months. I researched Beth Israel Deaconess Hospital pioneering studies of the disease. Their idea was to treat the symptoms with colchicine {rheumy gout] and dapsone [for leprosy]. I didn't have leprosy, but cartilage was disappearing. It worked. I was diagnosed in my mid-forties and am now 80. However, I do live with a lot of pain from time to time. I expect my life span to be shorter than it could have been. I live every moment helping others, teaching others. I have received priesthood blessings periodically from my church which I believe puts it in the hands of the Lord. So I accept whatever the outcome.

3/20/22 by shlawver 2500

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Have patience with the lack of information of the disease...

10/2/17 by Ana Luiza Bottura. Translated

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No disease is easy, with the help of God we'll get through this and our family will always be at our side to fight.

10/2/17 by Kevin Ochoa. Translated

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Do the treatment recommended by the doctors, even though these may cause side effects, because the inflammation that the PR can cause, always will be worse and more serious than any side effect of medicines . A lot of faith and strength!

10/2/17 by Glaucia. Translated

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Try your doctors will give you the most information possible, although most do not have much idea

10/2/17 by Sandra. Translated