Diagnosed with relapsing polychondritis

Rosepip,
There is a very good Yahoo support for people with Relapsing Polychondritis.
It is:***edited by moderator*** web addresses not allowed
You will find a lot of good help there.

As said previously, there is a very good yahoo group. I have had this condition for over 10 years, and I can say with certainty you need help NOW. Your rheumatologist should know enough to at least get you started on prednisone. You need to get your trach looked at ASAP- a risk of polychondritis is the collapse of the trachea. I also have lost total hearing in one ear and have lots of inner ear, dizziness and balance problems. You may need an ENT as well. Where do you live? Feel free to email me at ***this post is edited by moderator *** *** private e-mails not allowed **
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Look for an article by Karin I. Harp, dermatologist, regarding treatment for R.P. The same protocol was successful in treating my mother's symptoms for a few years; efforts to maintain her prednisone at 5 mg have not been helpful, as she suffers repeated relapses. All have responded to increase in pred., suggesting that maintenance dosage should remain higher after the 'treatment' dose.

I was diagnosed with relapsing polychondritis 4 years ago, after having a tracheostomy. I was UCLA having an emergency tracheostomy (the ENT I was seeing saw me a few days before and suggested I just do it in the office that day). For about a year or more, I had a hoarse voice and more and more occurrences of trouble breathing leading to ER visits at night and sleeping upright in a recliner (among a meriad of other symptoms). After the surgery, a rheumatologist at UCLA saw me and immediately diagnosed me. The hoarseness and trouble breathing were due to the collapse of cartilage in my trachea. 

My disease is finally under control. I am currently taking 5mg of prednisone (used to be 50mg and I had to VERY slowly taper from there) Humira once a week, .9cc's of Methotrexate per week, Folic acid and Imuran. (Other drugs I took in the past were Remicade and Enbrel.) I hope this helps you.

You might be able to get a referal (if you have an HMO and not a PPO) to a rheumatologist by your general practioner. First do an online search for rp specialists and call offices to find out if they are well versed in the disease or know of another doctor that they could recommend. The doctor that diagnosed me was at UCLA - Dr. Alan Gorn. Best of luck with your disease. Be proactive. Don't just let someone tell you they don't know. Your life could depend on it.

Hi there: I have yet to sign in to this site. I myself have Polychondritis, I have an appointment with the Head/Neck Specialist on Jan 3/14 to have it removed from the top of my earlobe.

It is said that yes those on Humira have a lower immune deficiency although I also read that it can be degenerative. I was adopted from my biological parents so many times, I have one biological sister that I contact. She did relate to me that our mother had something the same but at the back of her ear. She used to get my sister, when she visited from out of town to break it. Of course there is alot of pus etc. in that buldge. Mine is right in under the ledge if you want to call it that at the top of my ear. It is very painful, I sleep on that side and many nights I wake b/c I hit that spot at the top of my ear.

As I said my Physician is sending me to a Head/Neck Physician not a ENT Physician, I dont' know why the difference. However the Head/Neck Phys. is cutting it out and sending away for biopsy. Apparently this can turn to cancer. Dont' quote me b/c I read this somewhere so I dont' want to scare you. My ear at times is like someone is just pinching it as hard as they can, I find if I have my hair up and it cold outside, when the cold hits it WOW!!  I am wondering, did you have anything wrong with your ear prior to? As I read above you say relapsing pllychondritis. Whereabouts' was it in your ear? As I said mine is at the very top, although the Head/Neck Phys. did use the camera up through my nostrils. Apparently having this it can go elsewhere. I do find that I have all of the symptoms of polychondritis, my ear peels off layers of skin but its' so thin its like rice paper. It does bleed on occasion, and is quite painful. If I put a top on that goes over the head and touch my ear, I know it.

I will let you know after Jan 3/14 how everything went. I wont' hear anything from bio until I would assume 2wks. later.

Take care in the meantime, I feel your pain!

Hi, I'm 35 years old, and wad diagnosed a few weeks ago. My condition has progressed a lot before diagnosis, as my airways have collapsed. My treatment is CPAP THERAPY, Methotrexate, steroids, Folic Acid, Ondansatron, multiple nebulisers and Adcal D3 and others depending on your individual symptoms and stage. I too find little support, and feel left alone to deal with it. Lisa.

Sorry I have not been on this site for a while. Just to add to the above. The Head/Neck Physician removed the Polychondritis, which took a small part of my upper ear (not noticeable) and it turned out not to be Cancer. I have been back to see him 3 times, everything looked good. I have had no repeats of Polychondritis since then. I do not sleep on that side of my ear very often anymore but I honestly do not think that this has anything to do with it.

I just found this site and was so very happy to see your post regarding Dr. Gorn at UCLA. I have an appointment with him on April 13th. You are right--People have to be pro active with their health. Push for answers. You know your body and when something is off. I have met the most wonderful doctors and the worst doctors on this autoimmune journey. They are not all perfect. You have to fight to find the right one for you and your condition.

Thank you so much for writing in! I was just diagnosed with Polychondritis myself. Its been going on for about the past 5 months. I won't go in to detail much about how it started because it sounds like you already know. I am sooo scared! I too, hear nothing from the Rhumetologists except that they don't know anything about the disease and all you can do is take steroids, blah, blah blah. The steroids have done nothing and now they want to put me back on chemotherapy pills which I already have experience with from before the poly hit and they used it for my autoimmune disease in general which did nothing except make me sicker. I refuse to take it this time. I am very interested in hearing about your experience more. I also have open sores all over my body now. Did you ever have that? What happened with after 3/14?

Hi,
I am French and suffer from Relapsing Polychondritis
-Anaybody on the Forum wish to exchange about that disease?
Bon courage

Can you send me a link to this my dad has RP and it's about to kill him, he's in such pain

The Yahoo patient group is RPolychondritis, also on Facebook I think. American site Emedicine have good information on it, NORD also, even wikipedia has something. Treatment usually through Doctors specialising in Rheumatology but can involve respiratory or cardiology or ENT or eye or immunology or many specialties. A Rheumatologist or other Doctor / Clinic who deals with a large number of patients is possibly best option. Disease is highly variable in severity and response to medications, can be moderately mild chronic condition or very severe. Experienced advice necessary.

this is new to me I am trying to find out what to do

I need help this is my first time on line for this