What I've Learned So Far

 

Let’s peddle ahead 8 months. This disease is a mean one. It destroys all the cartilage in the body along with the collegian. It is also partial to eyes. Relapsing Polychondritis or RP evilly says,  “Let’s make her blind while we cut her off at the knees”. There is cartilage EVERYWHERE in your body.

As we go through my past, we can see where RP has hit. In 2010, I had my left foot fused because the cartilage was gone and my ankle was bone on bone. Now I have had both knees affected, both hips with a tear in the cartilage in my right hip.  

Take-away: This disease will not keep me from playing on the floor with grandchicklets. I’ve learned to get up off the floor, roll over onto all fours and push with my arms on a piece of furniture until I can stand up. This works for tubs too!!! (skip the furniture and use the side of the tub)

I have had shots in both knees, it has helped me for about 4 months, but I need to have them checked out again. This was by an orthopedic surgeon.

I have Trigeminal neuralgia which was diagnosed in 2011. It seems there is an inordinate amount of people with that and RP at the same time. Could this just be a coincidence, or is it related to RP? The migraines from Trigeminal neuralgia are called the “suicide headache” because it is extremely hard to get away from the pain.  I have found them to be diminished since I’ve been on Methotrexate. Several have this condition in our Facebook RP group. Take-away:  When I do get these migraines,  Maxalt helps better than anything else. See Medicines.

It has attacked both ears. When I am in a flare my ears go red and hot. It only goes red where there is cartilage. The lobe at the bottom of the ear doesn't go red because it isn't made of cartilage. My right ear is the worst and is starting to cauliflower over.

Take-away:  my glasses slide off easier as these ears break down, also the medical masks slide off so I double the loop around my ear to help stable them.

The tinnitus is still really loud. If everything in the room is ultra-quiet, the tinnitus is all the more extreme. See Three Ring Circus-Symptoms. Take-away: I seem to sleep better when there is noise in the room, then my brain focuses on that and the noise in my ears calms down. Might I suggest binge-watching Diagnosis Murder? Works for me. I’ve slept through many episodes, I need to binge watch again.

My nose keeps turning red and really aches. It could lose it's cartilage and it could saddle.  Take-away:  I’ve been looking at movie star pictures to see which one I would like when my nose decides to saddle. It takes forever to heal from a tiny cut, how would plastic surgery be? Any suggestions for a cute nose?

"When life gives you lemons make lemon chicken

and lemon pound cake.  Shake things up a bit."

-:-

What is Being Spotlighted Today - Symptoms

  

I call it a three ring circus (maybe even more rings). This means there is something going on in each ring such as knee pain, nose pain, tinnitus with one thing spotlighted. On one day the nose is hurting the most and the others are simmering, later that day the tinnitus is extremely loud, with the knees have a catch in them but not spotlighted. It runs through the body that way if you are lucky with most the things on the simmer and only one spotlighted. Hopefully not all rings are spotlighted at the same time, we call that a flare!

Definition of Symptoms by the National Institute of Health

Relapsingpolychondritis (RP) is characterized by recurrent inflammation of cartilage (the tough but flexible tissue that covers the ends of bones at a joint) and other tissues throughout the body. The features of the condition and the severity of symptoms vary significantly from person to person, but may include:

• Ear: The ears are the most commonly affected body part. Symptoms include a sudden onset of pain, swelling, and tenderness of the cartilage of one or both ears. The pinna usually loses firmness and becomes floppy; hearing impairment may also occur. Inflammation of the inner ear may also cause nausea, vomiting, dizziness, and/or ataxia. The ear can eventually deform to look 'like a boxers' ear or cauliflower ear'.

• Joint: The second most common finding is joint pain with or without arthritis.

• Eye: Affected people may experience episcleritis, uveitis and/or scleritis. Scleritis may lead to a bluish or dark discoloration of the sclera (white of the eye) and may even be associated with vision loss in severe cases.

• Nose: Nasal cartilage inflammation may lead to stuffiness, crusting, rhinorrhea, epistaxis (nose bleeds), compromised sense of smell and/or saddle nose deformity (a condition where the nose is weakened and thus "saddled" in the middle).

• Airways: Inflammation may affect the larynx, trachea (windpipe), and bronchi (tubes that branch off the trachea and carry air to the lungs). Airway involvement may lead to a cough, wheezing, hoarseness and recurrent infections. It can become life-threatening if not properly diagnosed and managed.

Less commonly, RP may affect the heart, kidneys, nervous system, gastrointestinal tract, and/or vascular (veins) system. Nonspecific symptoms such as fever, weight loss, malaise, and fatigue may also be present.

Let's get together and see what those of us diagnosed with Relapsing Polychondritis have in common. Because RP is so rare, new things about it are being found out all of the time.  

Summations from the Facebook group:

As those of use living this disease each day in and day out, we have found some commonalities among us. We find so very many symptoms that all of us share. Usually all of the above with a strong percentage with these other conditions.

• Many of us have problems with our spines, bulging discs, Degenerative disk disease, herniation, stenosis
• Tinnitus 
• Costochondritis
• Multiple urinary tract infection
• Pain across the face
• Exhaustion not associated with the drugs
• An interesting number has Trigeminal neuralgia
• Labral Tears in our hips

Giving It A Name is Half The Battle

Bingo! Rheumatologist #2

This doctor is a specialist in Autoimmune Diseases and is an associate teacher at the University Of Utah Medical School. He said he was 60% sure I had Wegener’s. I had the ANAC test result that said I had it but I was missing a few things. He kept saying that there was something that we were missing, I remained on Methotrexate. Some days were good and some weren’t. Then in December I went into my appointment on a day that wasn’t so good. I was sweating, my face really hurt, my nose and eyes were red, I was out of breath for no good reason. After talking with me for a while he decided to check my ears. That is when he saw it. My red ears. 

Can I say he was excited? He nearly did a happy dance. He brought in another doctor and asked her to feel my ears, yes, they were hot and red. He asked me why I hadn’t told him about my red ears before? Well, maybe because all things considered, that didn’t sound like it was a big deal. That is when he named it… Relapsing Polychondritis… a cousin to Wegener’s. He sat with me and went through all of my symptoms and yes, I have every one of them but one. Which one? The only one I would like and that is weight loss. Sigh….. He promptly tripled my Methotrexate. My appointment had taken a long time so he told me to go home and look up the disease. My husband wasn't in my appointment, he met me after and I had to go get some labs done so I told him the name of the disease and went to the labs. When I came back, my dear husband had a very strange look on his slightly ashen face. "Debbie, honey, this isn't good".

“God gave me my husband so we could weather the storms of life together.”

Symptoms of Relapsing Polychondritis by the National Institutes of Health

There are no tests available that are specific for relapsing polychondritis (RP). A diagnosis is, therefore, generally based on the presence of characteristic signs and symptoms. For example, people may be diagnosed as having RP if they have three or more of the following features:

• Inflammation of the cartilage of both ears
• Seronegative (negative for rheumatoid factor) polyarthritis (arthritis that involves 5 or more joints simultaneously)
• Inflammation of the cartilage of the nose
• Eye inflammation conjunctivitis, episcleritis, scleritis, uveitis
• Inflammation of the cartilage of the airway
• Vestibulardysfunction (i.e. vertigo, hearing loss, Tinnitus

Every one! I had every stinking symptom. I was excited to give this craziness a name, until we delved into it more. See Three Ring Circus-Symptoms.

I’ve Become A Passenger

  "Now it is well known that when there are many of these flowers together their odor is so powerful that anyone who breathes it falls asleep, and if the sleeper is not carried away from the scent of the flowers, he sleeps on and on forever"

Exhaustion was now my constant companion. Deep, heavy, debilitating, complete, all encompassing, weak exhaustion. All I could do was get out of bed and get dressed. Sometimes, just getting out of bed was all that I could accomplish. I didn't need the sweet smell of poppies to put me to sleep. This was totally not the get out of bed and go to the swimming pool at 5:30 in the morning gal. My eyes were still blurry and I was trying to do my part as the Publicity Chairwoman of the Festival of Trees a charity to help children at Primary Children's Hospital. I felt very grateful for 2 good hours a day. See Three Ring Circus - Symptoms.

Help was on the Horizon The Internist

As with the other doctors he was great. Up until now everything was a mystery until he saw the ANCA blood test result - positive. He said he finally knew what was going on with me. He ordered a CT scan of my sinus and an x-ray of my lungs. He set me up with a Rheumatologist and told me I had Wegener’s (Granulomatosis with polyangiitis). 

We are now 5 months after the attack on my eyes. I was getting weaker and weaker. Always in pain, my chest, knees, hip, ears and face. My balance was all off. We had visited every doctor imaginable. My patient husband and I have probably spent enough money on doctors and tests that we could buy a small luxury car. (just kidding) But we are in the USA with the best medical treatments available. No complaints….Sigh…

Rheumatologist #1

The ANCA test and a referral from the internist finally got me into a rheumatologist.  He said it sounded like Wegener’s but not everything was in place for that. He started me on prednisone. Can I say here how much I hate that stuff? The weight gain is just not fair!!! He wanted to have whatever was attacking my eyes stop. As soon as I started the prednisone I came back alive somewhat. That was important, my responsibilities were massive and I had dead lines, meetings, phone calls, meetings with the press, printers, executive board meetings for the Festival of Trees. 

Then after a while on ‘the drug that shall not be named’ he put me on Methotrexate. Methotrexate is a chemotherapeutic drug that weakens the immune system to get the body to stop attacking itself. I researched it and decided I would rather give myself the shots over taking the oral medicine. The side effects weren’t as pronounced.  I really improved on the Methotrexate. The extreme exhaustion was lightened. I explain this exhaustion as the feeling you get after running a marathon, crossing the line and going into a joyous limp body. However, this exhaustion comes after no exertion and there is no joy in it at all.

Sometimes my husband would drive me places because my eyes were tired and blurry.  Sometimes my body would play an evil trick on me and just stop moving when I was in the middle of meetings or driving the 45 miles to do all my publicity errands. It is extremely hard for an independent woman that has run her own business for years to become a “passenger”.  One day, I exclaimed to my husband “I’ve become a passenger” like it was a black mark on my character. Caused him some chuckles, but I was serious.

I pushed myself very hard to get through our Festival, the first full week of December. I did my best to not let how I felt be seen and my friends were incredible supports. I love serving my community by helping with that Festival. It has been part of my life since 1998. 

My Rheumatologist watched me go excitedly through the process to help this charity event come to fruition. When it was over he kindly told me that my inflammation level was extremely high and he rarely if ever does this but, in my case, he needed to say it. "Under doctor’s orders".... I was to give up my charity work. Although it is something I love, and it didn’t feel like stress, but it was still stressing my body. I think that is the first time I truly felt somewhat broken, at least my heart was. He also told me to see an ENT (Ear Nose & Throat doctor.)

Being of service to others is what brings true happiness.
-:- Marie Osmond -:-