Relapsing polychondritis

I am in Fountain Hills next to Scottsdale and have RP, one of my 6 AI disorders. I am sure the Mayo’s rheumatology team would treat RP. My RP is mild and the least problematic of my AI problems, but I know it can be significant for others and because rare, is not known by many physicians. I would be happy to help you either through this thread or by private messaging. Let me know what questions you have and hopefully others will join the discussion. Welcome to Mayo Connect!

Thank you so very much for your feedback I am wondering if there is a long wait to get an appointment & if you could recommend a Dr that specializes in RP
I have been dealing with a flareup for a couple months now & the Dr I am seeing now is not experienced in RP & she has not been able to help me get this flare down 🫶🏽

Also I am worried with the Winter months coming as as long as I have this flareup that I cannot get any of the immunizations recommended
I am told I need these to help me this Winter jic I do contract a virus

I’m wondering what symptoms you are experiencing and if you have been given a course of steroids like prednisone? There’s also a good, strong anti inflammatory drug typically used for gout that works really well and very quickly (within a day or two) that is not a steroid (colchicine). Perhaps you could discuss these options with your doctor. Mayo Clinic might get you into rheumatology clinic but it might take a month or so. I would try to get current Dr to treat you for this flare and start the Mayo application for longer term treatment. I can give you the names of a couple of good rheumatologists in Scottsdale as well that I have seen. One male, one female. I will private message those to you. I know of no reason you can’t get vaccines but your antibody response
may be blunted somewhat if you’re on high dose of steroid. I understand your concern about the winter months.

Thank you I received your private message I appreciate all your feedback very much I will definitely look into the colchicine, and yes I do have a current Rheumatologist its just hard to get responses back when I have concerns such as my flareup not getting better after still having for over a month. I have made contact with the Mayp submitted a request for an appointment yesterday just awaiting a reply 🫶🏽

The lady docs office has several rheumatologists and nurse practitioners, which gives you more options and often sooner appointments if you see an NP. They are good and organized, responsive. The male is a solo practitioner, good but appointments can take longer if you choose that route. I would get both Mayo and private pathways going in parallel and see what you like the best. Mayo rheumatology tends to be more academic and may require you fit “textbook “ picture. Just my experience there, totally depends on the Dr you see.
You’re on the right path for the help you need!

Thank you sm for this advice it truly helps me so much, I just realized you asked what my symptoms are, for the past year my issues are pain in chest, back & trachea with loss of voice & some hearing loss in right ear I have had multiple ear flareups I still get pain & lots of popping in my ears, I have been getting symptoms of pain in my chest for about 3 years & now I am being told it could be symptoms of RP all along I am taking 12.5 mg of methotrexate 1 x weekly & 20 mg of prednisone a day which I want to get off of asap, I was diagnosed by my ENT then he referred me to Rheumatologist & she isn’t experienced with RP I am pretty sure she just researched how to treat me on the spot by researching RP & that’s how she found out how to test me with these meds she has me on The prednisone really makes my GERD react & gives me severe heartburn so I went from sometimes taking a 10 mg if Fomotidine as needed which was very rare to 40mg a day & I have a lingering cough which my ENT prescribed Benzonatate two 100mg 3 x a day& Odansetron for nausea from the methotrexate I haven’t had any tests besides the scope from my ENT of my nose & trachea he said the inflammation in trachea is minimal but can’t help with the chest pain my Rheumatologist says I need to see a Pulmonary specialist

Thanks so much for the additional information. This is really helpful. With the extent of your symptoms, I do believe you fit the “textbook “picture and Mayo Clinic may be your best bet in the long run. It will be a lot quicker there because they get all Specialist that you need assembled usually within the week of your appointment to evaluate you and make recommendations. You do need to see a pulmonologist for a bronchoscopy and a Dynamic CT scan of the chest. the bronchoscopy evaluates the extent of inflammation in the trachea and the dynamic CT is a CT “in Motion “. These two tests evaluate for tracheobronchial malacia, a condition caused by RP that affects your respiratory function. It is a softening of the tracheal rings that causes the trachea to collapse partially when exhaling.
As for your symptoms, I’m wondering if the chest pain is related to chest wall cartilage inflammation, IE, costochondritis. Your medications seem appropriate.
A higher dose of methotrexate may allow you to keep the prednisone dose at a lower level. The prednisone may be helping you the most right now, so I would not be in a hurry to get off that until you have something else more effective in place. Methotrexate is often prescribed up to 20 or even 25 mg. To combat the nausea it can be given yourself by a subcutaneous injection weekly instead of pills. There are many other medications in the arsenal against auto immune disease that are more potent if needed. The Mayo Clinic is good at matching patients with doctors who have a special interest in their condition. I truly think your situation is going to change for the better very soon. You’ve been ill for quite a while without adequate help and I think help is on its way!

PS your ear pain and popping may be due to eustachian tube inflammation. This might respond to a nondrowsy antihistamine such as fexofenadine daily, a nasal steroid spray like fluticasone, and pseudoephedrine, a decongestant. All three are over-the-counter. You may benefit also from a stomach acid reducer OTC, omeprazole, in addition to the famotidine. They can both be taken, but I would run all these suggestions by your primary care or rheumatologist.

Thank you again this information is like gold to me you have no idea
My Rheumatologist hasn’t explained any of this to me so this gives me a lot of clarity as to what my issues are stemming from & I appreciate all of this information & your advice
I am trying now to get into the Mayo Clinic my husband just added me to his insurance & it kicks in next month on December 1st
Just gotta get through these Winter months without vaccinations for all viruses out there I get nervous & I am flying am nervous about flying in 2 weeks to Phx as we are relocating there especially knowing that a face mask doesn’t really help
Once again a huge thank you 🫶🏽