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

See some advice from people with experience in Relapsing Polychondritis to people who have just been diagnosed with Relapsing Polychondritis

Receiving a diagnosis of Relapsing Polychondritis (RP) can be overwhelming and may leave you with many questions and concerns. While I am not a medical professional, I can offer some general advice and suggestions to help you navigate this condition. It is important to consult with your healthcare provider for personalized guidance and treatment options.

1. Educate Yourself

Take the time to learn about RP, its symptoms, causes, and available treatments. Understanding the condition will empower you to make informed decisions about your health. Reliable sources such as medical websites, books, and support groups can provide valuable information.

2. Build a Support Network

Reach out to friends, family, and support groups to create a network of people who can offer emotional support and understanding. Connecting with others who have RP can provide a sense of community and valuable insights into managing the condition.

3. Establish Open Communication with Your Healthcare Provider

Develop a strong relationship with your healthcare provider, ensuring open and honest communication. Regularly discuss your symptoms, concerns, and treatment options. Ask questions and seek clarification to actively participate in your healthcare decisions.

4. Follow Your Treatment Plan

Adhere to the treatment plan prescribed by your healthcare provider. This may include medications to manage symptoms, reduce inflammation, and prevent further damage. It is crucial to take medications as directed and attend follow-up appointments to monitor your progress.

5. Prioritize Self-Care

Engage in self-care practices to support your overall well-being. This may include maintaining a balanced diet, getting regular exercise (as recommended by your healthcare provider), managing stress through relaxation techniques, and ensuring sufficient rest and sleep.

6. Monitor and Manage Symptoms

Keep track of your symptoms, their frequency, and severity. This information can help your healthcare provider assess the effectiveness of your treatment plan. Additionally, identify triggers that worsen your symptoms and take steps to avoid or manage them.

7. Stay Informed about Research and Clinical Trials

Stay updated on the latest advancements in RP research and clinical trials. New treatments and therapies may become available, and participating in clinical trials can contribute to the development of improved management strategies.

8. Seek Emotional Support

Living with a chronic condition like RP can be emotionally challenging. Consider seeking professional counseling or therapy to help you cope with the emotional impact of the diagnosis and manage any anxiety or depression that may arise.

9. Take Precautions to Protect Your Health

RP can weaken cartilage in various parts of the body, making you more susceptible to infections. Take precautions to protect your health, such as practicing good hygiene, getting recommended vaccinations, and avoiding exposure to individuals with contagious illnesses.

10. Live a Balanced Life

While RP may require adjustments to your lifestyle, it is important to continue pursuing your passions and maintaining a fulfilling life. Adapt activities as needed, but strive to engage in hobbies, spend time with loved ones, and focus on activities that bring you joy.

Remember, this advice is not a substitute for professional medical guidance. Consult with your healthcare provider for personalized advice and treatment options specific to your condition.

Diseasemaps

Posted Apr 26, 2017 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.

Posted Apr 27, 2017 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

Posted Apr 27, 2017 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.

Posted Aug 9, 2017 by Louise C 1450

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

Posted Aug 14, 2017 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!

Posted Sep 1, 2017 by Diane 2050

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

Posted Jun 11, 2019 by [email protected] 1000

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

Posted Jun 12, 2019 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.

Posted Jun 12, 2019 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!

Posted Jun 17, 2019 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

Posted Dec 30, 2019 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.

Posted Dec 30, 2019 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.

Posted Mar 20, 2022 by shlawver 2500

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

Posted Oct 2, 2017 by Ana Luiza Bottura 2000

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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.

Posted Oct 2, 2017 by Kevin Ochoa 2000

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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!

Posted Oct 2, 2017 by Glaucia 1800

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

Posted Oct 2, 2017 by Sandra 950