My mother had severe septic arthritis as a child and has had flare ups in her nose and ankles but nobody ever connected these events until the cartilage in my nose began to inflame. I was prone to inner ear aches as a child but never external ear swelling. I am 16 currently so this is pretty young for RP. Its crazy that it took all of this time for a doctor to connect these dots and suspect RP. This is often misdiagnosed because the mobility of the inflammation. Thought I’d share a bit about my experience :)
First of all thanks Dr. Arnaud for all the work that you made for us! I suffer from Relapsing Polychondritis, an immune-mediated inflammatory disease, I developed the disease at the age of 13 in the distant 2002 during the application of allergen-specific immunotherapy (SIT). Because allergen-specific immunotherapy causes changes in the immune system, it is possible that it may influence the induction of diseases mediated by the immune system, such as autoimmune diseases, even some doctors point to the induction of autoimmunity as one of the possible consequences of long term of the SIT. It appears that increased concentrations of IL-10 and TGF-B, as well as changes in the Th2/Th1 balance, could lead to autoimmune problems in people undergoing SIT. Relapsing Polychondritis is a Th1- and IL-10 mediated condition. In the medical literature there are several cases published over several years such as that of Dr. Ghorschi et al, “Manifestation of rheumatoid arthritis during subcutaneous allergen-specific immunotherapy”, “Scleroderma related to specific immunotherapy. Maciel BM Clinical Case, Morphine BM.” “Turkcapar N, M. Sjogren’s syndrome induced by specific immunotherapy.”, Pemphigoid-like reaction by allergen-specific immunotherapy: an unusual adverse reaction Margarita Tomás-Pérez, among others. The MDs, PhDs. Allan Linneberg and Andrzej Bozek carried out investigations where the cases of autoimmune disease that have occurred during or after the application of Specific Immunotherapy published in the medical literature are pointed out, their conclusion is that the development of autoimmune diseases in patients with allergic diseases undergoing SIT it is rare, but as a precautionary principle it is extremely important to evaluate people in terms of the risk of autoimmunity before the application of allergen-specific immunotherapy. There are several cases of people who have developed autoimmune diseases during this treatment, many of these cases have not been published, and as Dr. Linneberg mentions, it is a sensitive issue that important measures must be taken. In the main guidelines for the use of specific immunotherapy, such as the EAACI, the DGAKI and in the forums of the American Academy of Allergy, Asthma and Immunology AAAAI, the topic is mentioned. Research and published cases acknowledge the great ignorance and uncertainty that prevails in this area and calls for a strong precautionary principle in relation to allergen-specific immunotherapy and the risk of autoimmune diseases. I was treated negligently by an allergist member of the National Council of Clinical Immunology and Allergy (CONICA) in Mexico, my case was not published in the literature. My health was destroyed by Allergen Specific Immunotherapy and a negligent Allergist. We have created a support group for people suffering from Relapsing Polychondritis. www.policondritis.com
Five months ago, scleratitis(Ophthalmology), chondritis(otolaryngology) started. I have confirmed RP. I'm on steroids, MTX right now. Another organization is feared to be attacked. I'm eagerly waiting for a good cure to come out. For your information, I am Korean.
i am korean as well residing in seoul now and i couldn't find any online cafe or groups for this disease sadly. After 5 years of being puzzled, now im on steroids. Hope there would be more medical results n cure for RP soon
I was diagnosed with RP last fall. At first my ENT and rheumatologist thought I had GPA because of positive ANCA but two biopsies came back negative and scans revealed no legions. You say positive ANCA means it’s not RP? I’m wondering if i should ask to be tested again?
ANCA is non specific, but if it is positive would need thorough workup to rule out an ANCA associated vasculitis such as GPA. However can certainly have RP with positive ANCA .
My left ear swelled up and was painful (when pieced, fluid came out) , my jaw started hurting and many of my joints (hips, ankles) started hurting, as well as the very bottom of my ribs on both sides. This happened over 2 months. Does this sound like the disease in question?
I tested positive for Covid this past Monday by Wednesday the cartilage in both of my ears started to look full and swollen. It starts at the anti-tragus right above the earlobe (earlobe has not been affected) but all the way up to the top is looking deformed. My ear is almost Elf like and I am so scared. The doctors are not saying any idea of what it is besides its covid related and put me on a 3 day course of Presidone. My ear in not red or painful and its not extremely swollen but very much abnormal.
S'il vous plaît! Est-ce qu'on peut trouver cette conférence en français ou ..en espagnol. Je parle pas l'anglais. Merci infinimment. Cordiales salutations
Hi, I also have several different neurological ways that RP affects me. I have vasculitis and really feel that is contributing to those symptoms also. Let me know if you want to compare experiences. Take care, Cathy
@@truthseeker2250 What were your first symptoms? My ears have started being warm and painful. I have others symptoms as well I'm starting to worry that I may have RP.
My mother had severe septic arthritis as a child and has had flare ups in her nose and ankles but nobody ever connected these events until the cartilage in my nose began to inflame. I was prone to inner ear aches as a child but never external ear swelling. I am 16 currently so this is pretty young for RP. Its crazy that it took all of this time for a doctor to connect these dots and suspect RP. This is often misdiagnosed because the mobility of the inflammation. Thought I’d share a bit about my experience :)
Thanks Amanda, it is important also shared our personal experiences.
You can get more info about RP here if you want: reconnet.ern-net.eu/disease-rp/
First of all thanks Dr. Arnaud for all the work that you made for us!
I suffer from Relapsing Polychondritis, an immune-mediated inflammatory disease, I developed the disease at the age of 13 in the distant 2002 during the application of allergen-specific immunotherapy (SIT).
Because allergen-specific immunotherapy causes changes in the immune system, it is possible that it may influence the induction of diseases mediated by the immune system, such as autoimmune diseases, even some doctors point to the induction of autoimmunity as one of the possible consequences of long term of the SIT. It appears that increased concentrations of IL-10 and TGF-B, as well as changes in the Th2/Th1 balance, could lead to autoimmune problems in people undergoing SIT.
Relapsing Polychondritis is a Th1- and IL-10 mediated condition.
In the medical literature there are several cases published over several years such as that of Dr. Ghorschi et al, “Manifestation of rheumatoid arthritis during subcutaneous allergen-specific immunotherapy”, “Scleroderma related to specific immunotherapy. Maciel BM Clinical Case, Morphine BM.” “Turkcapar N, M. Sjogren’s syndrome induced by specific immunotherapy.”, Pemphigoid-like reaction by allergen-specific immunotherapy: an unusual adverse reaction Margarita Tomás-Pérez, among others.
The MDs, PhDs. Allan Linneberg and Andrzej Bozek carried out investigations where the cases of autoimmune disease that have occurred during or after the application of Specific Immunotherapy published in the medical literature are pointed out, their conclusion is that the development of autoimmune diseases in patients with allergic diseases undergoing SIT it is rare, but as a precautionary principle it is extremely important to evaluate people in terms of the risk of autoimmunity before the application of allergen-specific immunotherapy.
There are several cases of people who have developed autoimmune diseases during this treatment, many of these cases have not been published, and as Dr. Linneberg mentions, it is a sensitive issue that important measures must be taken.
In the main guidelines for the use of specific immunotherapy, such as the EAACI, the DGAKI and in the forums of the American Academy of Allergy, Asthma and Immunology AAAAI, the topic is mentioned.
Research and published cases acknowledge the great ignorance and uncertainty that prevails in this area and calls for a strong precautionary principle in relation to allergen-specific immunotherapy and the risk of autoimmune diseases.
I was treated negligently by an allergist member of the National Council of Clinical Immunology and Allergy (CONICA) in Mexico, my case was not published in the literature.
My health was destroyed by Allergen Specific Immunotherapy and a negligent Allergist.
We have created a support group for people suffering from Relapsing Polychondritis.
www.policondritis.com
Great talk
Thank you!
informative and scientific, thank you
Thank you for your comment.
Five months ago, scleratitis(Ophthalmology), chondritis(otolaryngology) started.
I have confirmed RP.
I'm on steroids, MTX right now.
Another organization is feared to be attacked.
I'm eagerly waiting for a good cure to come out.
For your information, I am Korean.
i am korean as well residing in seoul now and i couldn't find any online cafe or groups for this disease sadly. After 5 years of being puzzled, now im on steroids. Hope there would be more medical results n cure for RP soon
I was diagnosed with RP last fall. At first my ENT and rheumatologist thought I had GPA because of positive ANCA but two biopsies came back negative and scans revealed no legions. You say positive ANCA means it’s not RP? I’m wondering if i should ask to be tested again?
ANCA is non specific, but if it is positive would need thorough workup to rule out an ANCA associated vasculitis such as GPA. However can certainly have RP with positive ANCA .
Hello : thank you for the video
My left ear swelled up and was painful (when pieced, fluid came out) , my jaw started hurting and many of my joints (hips, ankles) started hurting, as well as the very bottom of my ribs on both sides. This happened over 2 months. Does this sound like the disease in question?
I tested positive for Covid this past Monday by Wednesday the cartilage in both of my ears started to look full and swollen. It starts at the anti-tragus right above the earlobe (earlobe has not been affected) but all the way up to the top is looking deformed. My ear is almost Elf like and I am so scared. The doctors are not saying any idea of what it is besides its covid related and put me on a 3 day course of Presidone. My ear in not red or painful and its not extremely swollen but very much abnormal.
Pueden poner la opción de subtitulo en español?
We are working on this aspect related to the language barrier.
Where are the center in Italy?
Have you found info for that?
Here you can find the info and other relevant contents on RP: reconnet.ern-net.eu/disease-rp/
S'il vous plaît! Est-ce qu'on peut trouver cette conférence en français ou ..en espagnol. Je parle pas l'anglais. Merci infinimment. Cordiales salutations
We are working on this aspect related to the language barrier.
I have CNS involvement.
Hi,
I also have several different neurological ways that RP affects me. I have vasculitis and really feel that is contributing to those symptoms also.
Let me know if you want to compare experiences.
Take care,
Cathy
@@truthseeker2250 What were your first symptoms? My ears have started being warm and painful. I have others symptoms as well I'm starting to worry that I may have RP.