Relapsing Polychondritis

@becsbuddy

Thank you for your reply.
I had been working with Brigham and Women's Hospital in Boston for the neurological and heart problems for years.

When I moved back to Florida is when a lot of my problems started with getting any Doctor to listen or take me seriously. A good example is my heart. I fought with 2 different cardiology practices to be seen by an electrophysologist for my arrhythmias. Finally in 2019 I saw my first 1 after being in Florida for 4 years. They implanted a ICD. When I had my post op appointment I was told the Doctor had left the practice. When they implanted the device I was a bit confused about it's placement. It's supposed to be in the upper chest around the 4th rib. Mine was placed underneath my left breast where the wire or support for your bra goes. When I questioned the new follow up Doctor he got offended and even though he wasn't an electrophysiolgist he was to take over my care. Come time for my next follow up and my appointment was canceled because the doctor was sick and they didn't know when he'd be back, lol. This went on for 3 years until I got fed up with not being followed up on and basically I was told they couldn't help me and not to come back?

I found a new Cardiologist who was so stunned to see where my device was placed that every time I went to see her, she'd ask if I minded if such and such could come and check it out, lol. Not even kidding. They all agreed it needed to come out and be replaced but sadly had no one in their practice to do it.

Finally last year I got a new electrophysiologist who finally removed my old device and placed a new one in. This was November of last year. By February he was gone and I have been round and round with this practice because I haven't been followed up on in almost a year.
Finally, I am seeing a new Doctor so hopefully he'll stay around. But, I found out when I went to my appointment my new device had failed in March and is completely dead.

My PC Doctor is useless. She does not listen and does not like it when my other Doctors try to tell her anything. When it came to my vasculitis. 2 of my Doctors had suggested I speak to her about referrals and she flat out told me I did not have vasculitis or RP.

My ENT who agreed one of my other doctors that they believed I had either one, the other or if my luck was bad both. She still would not listen to them and send me to anyone. My ENT who is a Professor at USF and part of Tampa General is the Doctor who has been getting me the referrals and setting me up with Rheumatologist and other specialist who are also USF and TGH doctors but they believe I am beyond their scope of care and right now I am told there's maybe 3 specialist that are familiar with the combination of autoimmune problems I have and they are all over the US and not local. So, right now I am trying to figure where and how to go see one while also battling medicare and my advantage provider.

@becsbuddy

Thank you for your reply.
I had been working with Brigham and Women's Hospital in Boston for the neurological and heart problems for years.

When I moved back to Florida is when a lot of my problems started with getting any Doctor to listen or take me seriously. A good example is my heart. I fought with 2 different cardiology practices to be seen by an electrophysologist for my arrhythmias. Finally in 2019 I saw my first 1 after being in Florida for 4 years. They implanted a ICD. When I had my post op appointment I was told the Doctor had left the practice. When they implanted the device I was a bit confused about it's placement. It's supposed to be in the upper chest around the 4th rib. Mine was placed underneath my left breast where the wire or support for your bra goes. When I questioned the new follow up Doctor he got offended and even though he wasn't an electrophysiolgist he was to take over my care. Come time for my next follow up and my appointment was canceled because the doctor was sick and they didn't know when he'd be back, lol. This went on for 3 years until I got fed up with not being followed up on and basically I was told they couldn't help me and not to come back?

I found a new Cardiologist who was so stunned to see where my device was placed that every time I went to see her, she'd ask if I minded if such and such could come and check it out, lol. Not even kidding. They all agreed it needed to come out and be replaced but sadly had no one in their practice to do it.

Finally last year I got a new electrophysiologist who finally removed my old device and placed a new one in. This was November of last year. By February he was gone and I have been round and round with this practice because I haven't been followed up on in almost a year.
Finally, I am seeing a new Doctor so hopefully he'll stay around. But, I found out when I went to my appointment my new device had failed in March and is completely dead.

My PC Doctor is useless. She does not listen and does not like it when my other Doctors try to tell her anything. When it came to my vasculitis. 2 of my Doctors had suggested I speak to her about referrals and she flat out told me I did not have vasculitis or RP.

My ENT who agreed one of my other doctors that they believed I had either one, the other or if my luck was bad both. She still would not listen to them and send me to anyone. My ENT who is a Professor at USF and part of Tampa General is the Doctor who has been getting me the referrals and setting me up with Rheumatologist and other specialist who are also USF and TGH doctors but they believe I am beyond their scope of care and right now I am told there's maybe 3 specialist that are familiar with the combination of autoimmune problems I have and they are all over the US and not local. So, right now I am trying to figure where and how to go see one while also battling medicare and my advantage provider.

I have relapsing polychondritis, RA, systemic lupus, and CIDP. My RP is the least of my problems. as my symptoms are mild and infrequent. I was diagnosed because my rheumatologist recognized my nose as a “saddle nose “, where the bridge of nose is somewhat collapsed. We looked at old pictures of me and saw the nasal bridge changes. The only symptom I get is painful, tender external ear cartilage. I have also had costochondritis a few times Both are infrequent and don’t last long, so I am lucky. If you get flares with normal periods in between, the prednisone or a good NSAID seems like a good way to treat it to avoid being on a med all the time. I find diclofenac (Voltaren) gel helps my ears when they hurt. It’s OTC, an anti inflammatory topical. I hope your symptoms are not severe and respond well to treatment!

Hello, I also have RP, Polyarteris Nodosa combined with large and small vessel vasculitis, CRPS and various heart problems including POTS, AFIB and orthostatic hypotension with low pulse pressure, the vasculitis is also causing issues with my motor and peripheral nerves in my legs and left arm, just to name a few things 😀

My main issue with the RP is right now it seems to constantly attack the exterior cartilage of my ears.

When I have a flare up I end up with gangrene and whatever part is being attacked turns black and sometimes (I apologize, it sounds so gross) but I have actually had small areas of the outer edge of my ear break off. The last flare I had the whole outside cartilage turned black on my right ear and almost ate a hole through it.

It took 3 years of flares for someone to finally diagnose me. That is also when they diagnosed me with the vasculitis.

Does anyone else also have vasculitis and the RP? It's so painful when I have a flare up. This last time I went to the ER hoping they could help me by cleaning my ear and helping me but, they just sent me home with a paper on gangrene and told me I needed to have a surgeon clean my ear. I was heartbroken because I had stupidly thought that they might help me set that up.

I have to find a Rheumatologist that can handle the PAN and RP but because I am told it's rare to have both my current Rheumatologist said I will need a specialist to help me because sadly it's beyond her scope of knowledge.

Does anyone else deal with their ear cartilage turning black? I am starting to feel that familiar pain in both ears sadly, I have started the methal prednisone (sp) hoping to stop it but usually it goes from pain to a black area that spreads quickly. I now have been told once I finish the steroid pack to take 20mg of prednisone 3xs a day to try and catch it before it can blow up. These flares last for months. My last one started in November of last year and lasted until April before we got it under control.

Funny it's flaring again in November this year too.

If you have read my whole reply, thank you.

My family doesn't understand or know how to help me. My ENT is sending me for a cat scan of my ears and surrounding cartilage. Plus, I am having my chest cat scanned too because I am having pain around my rib cage and trouble breathing.

I'm hoping to find a community of people who understand what I am going through and I can talk to because right now I feel a bit alone and hoping that someone might have some ideas on what might help me when I have the flare ups or just be willing to listen to me.

Thank you.

@aprile4519 I just began doing research to find out why the cartilage on my ear is causing me so much pain. It comes and goes but it happening most days. It just started about 3 months ago. But it hurts enough and often enough for me to want to look into it. It's not the same feeling as an ear infection like an inner ear pain. It's my cartilage and it hurts to the touch and feels extremely tough almost stiff. It could be tension but I'm unsure. So I extremely curious how your felt in the very beginning. I'm hopeful I'm just overreacting