Relapsing Polychondritis

[janiner]

I need expert help – and know this is the place. So I had ear pain about three weeks ago. SEVERE outer ear pain. I had slept in some headphones listening to an audio book, so thought that might be it. I had also gone on motorcycle with husband, so putting helmet on, thought maybe a spider bite. I go to doc who says it’s an infection and gives me painful Rocefen shot and Keflex. Monday last week still same pain, redness, swellng, horrible. Go back to doc and get Supraxx, wider range antibiotic. Can’t sleep on that side, can’t touch it, etc. Go this past Monday and doc gives me Bactrim, says it’s a stubborn infection. I saw that’s crap at this point and ask for ENT referral. I had already been doing some research online and knew it might be inflmmatory issue. So ENT doc yesterday states it’s relapsing polychondritis. Does anyone on this site wth RA fight this horrible extra issue? He gave me burst of Prednisone, and also a nasal spray and anti-histamine, stating he likes to think out of the box and his theory was by keeping the nasal passages and sinus areas clear, it would cause less chance of allergies, thereby possibly keeping the inflammation down. His ultimate goal was to get the body balanced. He stated poly can go to any cartilage area on your body, which means ears, nose, throat, lots of fun places. So after my first two doses of prednisone, my ear is definitely feeling better, but now after doing more research online, I am so worried about what this means long term. Does anyone else battle this, what is your story/hopefully successful management. Any piece of advice, suggestion, or information would be so greatly appreciated, just like all the other times I have asked for it. If I did not have this site, I think I would go crazy. I hate venting and discussing this with husband or girlfriends, as who wants to hear about ailments all the time, so I’m really glad I have this place to go to. Signed- hope that I don’t look like Dopey soon…:(

[Maz]

@janiner wrote:

So ENT doc yesterday states it’s relapsing polychondritis. Does anyone on this site wth RA fight this horrible extra issue?

Any piece of advice, suggestion, or information would be so greatly appreciated, just like all the other times I have asked for it. (

Hi Janiner,

I’m certainly no expert, just a fellow patient, but have done some reading on the subject and it appears that relapsing polychondritis is another type of rheumatic disease that is often co-existant with another rheumatic disease, classed as “idiopathic” and “autoimmune” – i.e. no known cause for the self-attack.

Was “infectious cellulitis” considered as a possible alternative diagnosis? I’m sure you’ve done enough reading for yourself, but WebMD offers a list of alternative diagnoses. Just wonder infectious cellulitis might have been mentioned to you as another possibility – my father-in-law experienced this after a bug bite. In relapsing polychondritis, apparently the actual ear lobe is usually spared. Was your ear lobe inflammed and swollen, too? Was a cartilage biopsy taken to look for cartilage-specific auto-antibodies?

There may be more studies out there, but I have only been able to find one case of polychondritis tied to an infection – Lyme disease. Unfortunately, there is no extract available to read, but just wonder if you’ve ever been tested for Lyme?

http://www.ncbi.nlm.nih.gov/pubmed?term=lyme%20polychondritis

“Rev Rhum Engl Ed. 1997 Oct;64(10):589-90.

Coexistent dermatomyositis, relapsing polychondritis, and positive Lyme serology. A case-report.
Arniaud D, Mattei JP, Pham T, Guis S, Ba

[janiner]

Thanks Maz! I will look into the cellulitis angle……so frustrating. No biopsy taken. Lobe was completely spared, it was only outer ear cartilage area…..I’ll keep reading and keep you posted! Thanks again!

[dianne-sunshinecoast]

hi janiner and maz, sorry to hear about your ear janiner, sorry i dont have any input only a question, i noticed you were taking olive leaf , i was told i couldnt take it with antibiotics and mtx?all the best and hope you get relief soon 🙂 maz was interested in the chostocondritis, i was told years ago by a rheumy, before r.a.. that i had it and most people with fibromyalgia get it? …kind regards .. to you both.. di.

[Maz]

@dianne-sunshinecoast wrote:

hi janiner and maz, sorry to hear about your ear janiner, sorry i dont have any input only a question, i noticed you were taking olive leaf , i was told i couldnt take it with antibiotics and mtx?all the best and hope you get relief soon 🙂 maz was interested in the chostocondritis, i was told years ago by a rheumy, before r.a.. that i had it and most people with fibromyalgia get it? …kind regards .. to you both.. di.

Hi Di,

Yup, costochondritis, often with air hunger, is a symptom of alot of rheumatic diseases, including lupus and fibromyalgia. Question is, what infections could be implicated? Here is one Lyme doc’s take on fibromyalgia.

http://www.canlyme.com/fibrocfslyme.html

Babesiosis a malaria-like protozoan infection, relapsing and remitting just like malaria, and requires separate treatment with anti-protozoal meds. The interesting thing is that one of the few meds that seem to have any effect on lupus is plaquenil, which is an anti-malarial drug.

Hi Janiner,

One interesting association I just found on Wiki is that Saddle Nose, another polychondritis symptom, has been tied to congential syphilis (that is, syphilis passed from mother to child). The thing about syphilis is that it is a spirochetal organism much like borreliosis (Lyme). Of course, correlation doesn’t imply causation, but just considered this to be an interesting association in light of the study above tying one caseof polychondritis to Lyme.

http://en.wikipedia.org/wiki/Saddle-nose

This is also a pretty interesting article by Dr. B, the current president of ILADs (Intl Lyme & Assoc Diseases Society). Just over half way down the article in the “Assessment” section he says this:

http://www.mentalhealthandillness.com/tnaold.html

J”oint pain, swelling, and tightness is an earlier manifestation of Lyme disease and is often more effectively treated than the central nervous system symptoms. Knees are the joints most commonly involved (47). Bone pain as a result of periostitis affects certain bones, such as the tibias. The periostium is spongy on examination. Chronic fatigue and fibromyalgia may be seen as part of Lyme disease (48). Of course, these two syndromes can be caused by other conditions as well. Chondritis of the ear and nose and costochondritis are sometimes seen with these patients.”

[stwig]

@dianne-sunshinecoast wrote:

hi janiner and maz, sorry to hear about your ear janiner, sorry i dont have any input only a question, i noticed you were taking olive leaf , i was told i couldnt take it with antibiotics and mtx?

I have been reading up on Olive leaf extract, and just purchased some yesterday. I was unaware that I could not take it with antibiotics. Has any one else been told that it could not be taken with AP? If that is the case, I will be sad, as I need some help, and had hoped it would be beneficial. I continue to get worse. The only brief relief I have had was the temporary relief from a methylprednisone pack a week ago. The day after I took the last pill of the the 6 day pack, the swelling and pain started raging again.

Starla

[Author]

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