13 Top Signs of Relapsing Polychondritis
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- เผยแพร่เมื่อ 26 มิ.ย. 2024
- Did you Know the 13 Top Signs of Relapsing Polychondritis ? Learn more about #relapsingpolychondritis an #autoimmunedisease that can affect the eyes, ears, heart, skin and many other organs.
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Thank you so much for creating this excellent and thorough video. I was diagnosed with RP 4 years ago, after 20 years of symptoms off and on. It did not manifest in my ears until 2019, when I was diagnosed and the disease had become progressive/aggressive. By that point it was in my ears, nose, airway, joints, eyes, skin, and GI tract and I had associated small fiber neuropathy. I am very active in the patient community now and help run an online FB support group focused on sharing evidenced based research on RP to educate patients. We see so many patients struggling to get a diagnosis because physicians are not up to date on the disease, expecting that the damage will be readily visible in the ears, and the lab markers will always be abnormal. Through involvement with an RP Natural History study at the NIH, I haven learned that inflammatory markers can be normal (as they were with me), and damage such as "cauliflower ear" is not alway present.
Thank you so much for sharing your story and your experience with RP. It's great to hear that you're actively involved in the patient community and helping to educate others. Keep up the amazing work!
What is your group?
Thank you for making this video and increasing awareness of RP. Sadly, I was not diagnosed until I became very, very sick and spent a total of five weeks in the hospital in 2018. Along with one of the other commenters, we formed a science-based support group in 2021.
I would add that when I was in the hospital my ears were not actively flaring, I had mainly neurologic symptoms with brain inflammation and a new onset of neuropathy. When I tried to tell doctors about my ears they dismissed it as "unrelate".
Doctors, please listen to your patients! Don't expect patients to have deformed ears and collapsed noses from the beginning.
I will also add that even with MRI-proven brain inflammation, my inflammatory numbers were normal, my only lab abnormalities were a low sodium and high WBC without infection. My spinal tap was normal except for an elevated protein level. This disease can be difficult to diagnose.
Thank you so much for sharing your experience and insights! It's important for doctors to listen to their patients and consider all symptoms, even if they don't fit the typical presentation. Your story will definitely help others who may be going through similar struggles.
Thank you for such a clear and detailed video on this topic. I was just told by a rheumatologist that it can’t be RP because my ears aren’t damaged….yet! She seemed to think damage would happen straight away after first flare up. She also didn’t know that it can affect the inner ear. I have most of the symptoms that you cover in the video. I wish more clinicians had better knowledge of this condition.
Thank you so much for your kind words! I'm glad that my video was able to provide you with clear and detailed information on the topic. It's unfortunate that some clinicians may not have a comprehensive understanding of this condition, but I hope my video can help spread awareness and educate others.
I was diagnosed 2 years ago with Tracheobronchomalacia, and that lead to my diagnosis with Relapsing Polychondritis and Behçet’s disease. I believe that if a person has all 3, it’s called Magic syndrome? There isn’t much information on that. I’ve been experiencing many symptoms for many years. However, my Drs never took me seriously, didn’t even try to diagnose me, never looked into specific bloodwork or referred me to a specialist. Instead I was called a hypochondriac, needed mental help and ive been medically gaslit so many times.
Thank you so much for making this very informative video and I learned several new things about my health issues!
I'm so sorry to hear about your experience with your doctors not taking you seriously. It's important to advocate for yourself and keep searching for answers. I'm glad my video could provide you with some new information about your health issues.
Yes the searching and gaslighting!!! My ENT still thinks I’m just a hysterical female. Luckily I had an appointment with a dermatologist for acne whom I’d never seen before who diagnosed my RP.
My rheumatologist is saying all pain is fibromyalgia ( ribs, joints) and since my ears aren’t flaring, not treating me with any med or infusion.
This may be what I have several drs have said " you have a weird fascia disease.I have several symptoms not the nose or ear cartilage but the joints eyes inner ear throat heart etc. Im only 60! Im going to mention this next time. Ty for the information
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Unfortunately, I wasn't dx until I had lost my hearing. Several years later a punch biopsy of a skin lesion that would not heal revealed vasculitis as well. This was useful as my very painful symptoms were not fully controlled by Prednisone. Adding twice yearly infusions of Rituxan has helped a lot!
I'm so sorry to hear about your diagnosis, but I'm glad that adding the infusions of Rituxan has helped alleviate your symptoms. Stay strong!
Thank you for such a good, informative video! I got diagnosed with this after my dermatologist sent me to rheumatology on a hunch when I showed him photos of apparent ear chondritis. I had never heard of this disease in nursing school, neither had any of coworkers or half the providers I work with. When I started researching it, I must admit I was terrified, constantly worried about what happens if I get a severe respiratory flare up, etc. I’m glad to see there is research in the works on it and new information coming out!
Thank you so much for taking the time to educate. Well done.
Thank you for the kind words
I was diagnosed with Xyphi sternum costochondritis by a gastroenterologist but to take NSAIDS and it would go away. Then a year later I was diagnosed with RP by an internal medicine doctor but a rheumatologist told me I have fibromyalgia.
I have very painful lumps on my ribs, lumps on my sternum and a large fist sized lump under my right ribs and I can't kneel without losing my breath. Those are my only symptoms. All of my labs, sonograms and CT scans are absolutely perfect.
Going to have a full body MRI scan in March because the rib pain is getting to be unbearable and doctors just want to put me on antidepressants. I tried Gabapentin but it made my heart race even when I was sitting still.
The fact that I can't get a correct diagnosis and treatment is what is making me depressed!
Thank you for sharing your story and being so open about your struggles. It's important to raise awareness about the difficulties of getting a correct diagnosis and finding effective treatment. I hope that the upcoming full body MRI scan provides some answers and relief for you. Sending positive thoughts your way!
Thank you for this comprehensive and informative video. I was diagnosed in 2017 after 11 years of symptoms. I just learned last week that dizziness is associated with RP. My first symptom was eye involvement, however, it was quickly followed by dizziness so severe that I could not drive for 3 months. If you are in need of pictures for your educational journey, I would love to share my eye and ear photos for your use. Also, I have developed tracheobronchomalacia. How common is this in RP?
Thank you for sharing your experience with RP. It's important to raise awareness and support each other.
I was diagnosed after months of my nose feeling like it was on fire! I also had high Esr and high crp, so it helped with a quicker diagnosis. Ears get sore as well but does not hurt like my nose. I also have Bechets, which was only diagnosed after RP diagnosis and additional genetic studies. I get joint pain during flares and intense eye inflamation. Flares are treated with prednisone. Fun disease 😂 but I have done well with biologics and I have tried it all. Amjevita injections are the only treatment that have reduced my inflation levels. I take colchicine for behect flares. I have learned some new info from this video. Thanks for sharing.
Thank you for sharing your experience! I'm glad the video could provide some new information for you.
I recently been having pain on the outside of my ear , just one , I dont know if it gets red , but its real bad , when it hurts , even my jaw , seems to hurt ..it does not happen often , but when it does , its for about 8 hrs .Should I see a Dr.for that ?
Como mejorar o curar los síntomas mencionados yo tengo 69 años mido 5 pies y 2 pulgadas y me duele oído izquierdo siento mucha comezón me pongo agua oxigenada para controlar la picason yo pensaba era porque no me lavaba bien y ahora que veo este video me doy cuenta que no es así gracias por su información no entiendo todo pero me ayuda a
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Rub some cortisone cream around itchy ear. There are also steroid ear drops that doctor can give you. Be consistent or the itch will come back. I try to dry my ears out really well after bathing, or they get super itchy. Even blow hair blower in ear to make sure they are really dry. Then put cream on or drops in like 3 times a day. Good luck.
I have this I am certain. I'm sure I've had since my 40s. This round or flare my ears blew up (both) with the painful papules , had a bout with costochondritis, my nose is thick and crusty, and my hands and wrist are in such pain with sausage fingers and difficulty swallowing at times. Over the last decade I have lost my singing voice and have widespread joint pain and weird fibrous skin lesions. Negative ANA every time.
inflammation
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I have RP. I didn’t know it could affect my cranial nerves!!! What is treatment for this? How is this determined?
It's important to consult with a medical professional who specializes in RP to determine the best treatment plan for you. They will be able to provide you with the most accurate information and guidance.
Can it make cause muscles in bladder to be overactive? Bladder spasms?
i am not sure
What is the treatment for it?
Will follow in another video
Thank you very much
Do you ever see this in families? My mother had it along with vasculitis, RA and numerous other AI Dxs. I have a new heart murmur, eye pain and non stop throat clearing. Local medicine thinks I am crazy.
It's tough when local medicine doesn't understand the complexity of autoimmune diseases. Keep advocating for yourself and seeking the right medical care.
Is there any connection between relapsing polychondritis and either Usher Syndrome or retinitis pigmentosa? My father had retinitis pigmentosa and lost his hearing a few years lat🎉r and they believed he had Ushers Syndrome. I have lost a lot of my hearing…but in different ways. In 2008, I suddenly lost most hearing in my left ear. In the last five years, I have developed polychondritis ear flares and the most recent one affected the hearing in my much better ear. It kept feeling like my canal was collapsing, etc.
I have had genetic testing and trstrd pathogenic for a version of Usher a syndrome (which is hearing loss and vision loss due to the OTHER in RP… retinitis pigmentosa). I have pigment in my eyes and they can’t tell me if I will go blind like my father. This was before the polychondritis issue.
Further, your video mentioned trigeminal neuralgia as a possible associated condition. Around the same time I lost my hearing, I developed symptomatic Eagles Syndrome due to bilated ELONGATED and CALCIFIED styloid processes. My etyloids were so sharp and long they poked one surgeon’s gloves. They were also positioned, prior to resection, in contact with the C8 nerve root causing symptomatic glossopharyngeal neuralgia. It took multiple resection surgeries, but once they were resected, the neuralgia was gone.
I became symptomatic after my second cervical spinal fusion c4-C8. During this revision surgery, they added the C4-C5 segment and paralyzed one of my vocal cords. Six weeks after that surgery, while realizing my voice was damaged, is when my Gaping became excruciating. When my voice did not return, I found a surgeon willing to do the resections 😂hide also working on various injections and implant strategies for my voice.
I have developed an epiglottic web leading to frequent stridor and aspiration pneumonia but that may be made rose by my polychondritis. I have known about costochondritis since I was a child but the polychondritis started up about 4 years ago and I have had three flares since. The last flare has been the worst and affect each ear, but not at the same time.
I feel like every major symptom or condition can be caused from so many established medical conditions that I wind😂r if some of thise might all be related. I have a collagen disorder in my LEND3 gene, I have a pathogenic mutation in my COL2A gene and I am oathogeneoc on a gene for an ushers Syndrome type 1.
Do patients usually have so many cross overs like this? I feel like I am so complex that doctors are afraid to try to help me.
Thank you for sharing your story and the detailed information. It sounds like you've been through a lot, and I hope you find the answers you're looking for.
Hello. My 5 year old is in the midst of diagnosis. Her ears flare up and no one knows why. We have seen multiple doctors and specialist whom have not dealt with this case nor seen it and we are I search of finding someone who has especially in children. I question if my 2 year old son has this as well, he presents with a bleed back regurgitation of his heart (they say tricuspid valve regurgitation and PFD) but will swell all over with severe joint pain and unable to walk. Is this possibly generic or hereditary. They say no, but then they don't know much of this condition and I seriously question its hereditary and genetic factors
Same here. I was diagnosed with "a unique autoimmune disease", but they don't really know what it is. I have many of the symptoms listed here. My boy started having same symptoms at 3 yrs. We have been to like 10 pediatricians and specialists. They all say they have no idea what's going on. I don't know where to go next. Everything is getting worse as he gets older. It must be hereditary.
I have RP and I have valve regurgitation as well. I have it monitored evey year. Sending your family warm wishes ❤
My son is 34 and diagnosed last year mostly due to his ears being affected. He now has some purpura on his feet and a red rash on his abdomin to his genital area. His ear are red but no as edematous. Poor thing feels awful but he has a new GP and he doesn't seem to understand RP. We have photos we have taken and we date them for reference. Any suggestions.
THANK YOU, more videos will come!
this Saturday another video!
My ears get so hot they melt ice cubes like a hot knife in butter. Not to mention my ears are so floppy that they can be filed folded and stuck inside my ear canal. And my shoulder pain is insane, all different spots will shoot pain down my arm making my hand and fingers numb...and it's not a torn rotator cuff. I'm starting to think this may be the cause of what I've come to call "inside hurting"...
Also my brother was born with malformed arms like phocomelia, or thalidomide deformity
It sounds like you're going through a lot. Have you consulted a doctor about your symptoms?
Možete li ubaciti titl na srpskom jeziku,molim vas?Neša
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Is temperature important for polychondritis? Are the polychondritis patient's ears always red, swollen and painful in the cold or at room temperature? Do polychondritis ears return to normal in cold weather, or do they remain constantly red and swollen, regardless of the ambient temperature? Are the ears always swollen? Are there cases where they are just red without swelling? Unfortunately, I cannot find the answers to these questions. Can you help me? Thank you.
Thank you for reaching out with your questions.You will need a consultation to discuss your case!
RP patient here. My ears can be red, swollen and painful in ANY weather scenario, but heat tends to trigger me more. No, my ears aren't ALWAYS swollen, sometimes they are extremely red and painful but not swollen. However, i'd say more often than not they are red, painful, and swollen. I hope this helps. Please let me know if you have any other questions, I'd be happy to answer the best I can from a patient's perspective.
Is having at least two episodes of the swelling, redness, pain of the cartilage of the pinna of the ear that responds to steroids pathognomonic for RP? No history of trauma each episode, each time Dr. tried abx first with no effect, then switched to steroid with rapid effect.
Have other signs that may or may not be associated, joint pain, fatigue, GI issues. Kind of chronic symptoms that come to just live with as no test confirms anything. Joint pain attributed to prior sports injuries, other symptoms attributed to mental health as do have Dx of PTSD, depression, anxiety.
It sounds like you've been through a lot with those chronic symptoms. Have you considered seeking further medical advice to get a clearer picture of what's going on?
1:42 1:43 1:44
Thanks
My father suffering from this
Thanks