Steven's Story

Dale's Story

"What’s Wrong with Dale?" (written by Dale R.)

Long ago, back in the late 1980's, I developed severe and chronic lower back pain. Most was probably due to numerous horse spills, sports-type injuries, motorcycle racing, lifting heavy objects, plus many other pretty "tomboyish" activities and stupid thrills! Wow, if I had only known what was in store for me!

I gradually progressed to being in incredible, chronic pain and was desperate for some type of relief. Ken, my husband, and I went to numerous orthopedics and neurologists, only to find doctors who would say "Tell me what is really wrong" like I had a mental problem. Others told me I just needed to live with the pain. How many 28 year olds would accept this diagnosis?? I must admit Ken tried to talk me out of any type surgery, but he was not the one in constant pain. I should have listened to my husband!! We finally found a neurosurgeon who said he could help me. I had 2 ruptured discs, L-4 &

L-5. After several scans, including MRI's and a myelogram [from Online Medical Dictionary: A diagnostic procedure where a radiopaque contrast dye is injected into the spinal canal. X-rays are then performed which reveal the anatomy of the spinal canal. Myelograms can be used to diagnose disk disease, spinal stenosis and tumours of the spinal canal. MRI and CT scanning have largely displaced the use of this more invasive test.] (which in my opinion could just about kill anyone) the surgery went as scheduled. I was told I would be much better in 3-4 months with therapy. Wrong!!

After about 3 years of again constant, chronic pain, I was told I had a build-up of scar tissue in that area the surgery had been done and would need epidural steroid injections to reduce the scar tissue. This would be done by an anesthesiologist in a series of 3 treatments administered into the epidural space surrounding my spine. I went through 3 of these treatments, which hurt like heck! It was not a very pleasant experience to go through, but once again I was at the end of my rope to end or ease the pain. After going through the 3 treatments I noticed little to no relief.

Two days later after the last treatment ,we were out quite a bit that particular day on the farm, when I noticed I had a very bad headache and light sensitivity. At approximately 7 pm that evening, we grilled steaks & within 30 minutes I became violently ill. I went into the restroom and began to vomit several times. Ken asked me if I was OK, and opened the door to find me trying to climb the walls! He just about flipped out, not knowing what could be wrong with me. We are in a rural area and, at the time, did not have a 911 system. He got a neighbor to help hold me in the seat, and they proceeded to drive me to the nearest hospital. They were afraid I might try to jump out as I was like a person “gone mad”.

I vomited all the way to the hospital, and the last I remember is being put in a wheelchair. I remembered nothing for at least a week. They first told Ken I had a stroke and would probably not survive. Then, after drawing spinal fluid, the diagnosis turned to spinal meningitis. With a temp of 107, I also had encephalitis, which is swelling of the brain. Things sure did not look good for me. My husband was told if I did somehow survive, I would most likely have some type of brain damage. After a week or so, a nurse was washing my face when I opened my eyes. She nearly had a heart attack! I slowly regained my health, seeming to have no major neurological problems. When we asked the question of how bacteria could have gotten in my spine all the doctors either left or changed the subject. To this day I will forever believe this was the start of the Relapsing Polychondritis.

After several months of recovering from this near death experience, I began to develop severe sinus type problems. My nose would swell, hurt, and turn red. My ENT at the time said it was a sinus infection, but it did not respond to the antibiotics. As soon as I seemed to get better, my left ear did almost the same thing, just much more painful. Ken and I would sit in the floor and cry, the pain was so bad. We went from doctor to doctor, had private insurance with a very high deductible (meeting it several years in a row + our portion we had to pay). I went to a whole group of ENT's that said I had been bitten by a spider!! My ear became very swollen, enlarged, red, and oh, ever so painful.

As time continued to go by, this Relapsing Polychondritis (or RP, as it is called) continued to destroy cartilage and connective tissue throughout my body. I began to have breathing problems leading to panic attacks, plus the horrible ear pain continued to worsen. Desperate, crying and getting more broke with each doctor visit, I walked into a small town local doctor who took one look at me and immediately sent me to another doctor, a dermatologist who knew exactly what was wrong. He set up an appointment at Emory University teaching hospital in Atlanta, Ga. for the very next week. It was the dermatology dept. at Emory who diagnosed me, with no doubt, as having RP.

Besides the nose, ear and painful joints all over, now it was discovered it had invaded my aortic heart valve. After seeing rheumatologists, cardiologists and every other specialist you could think of, I was told my heart valve was leaking pretty badly, causing me to become extremely tired and weak. I would need heart surgery for an artificial aortic heart valve. We set it all up for January 1999, however I ended up with 911 en route to Emory in November 1998 after almost going into heart failure. My blood pressure on the way in the ambulance was 20/40! My daughter at the time was 2 years old. This was one of the toughest times in my life. I cried, prayed, did everything I could think of! I was absolutely terrified at this point. I went into the hospital at Emory on a Thursday, and they had to wait until Tuesday to stabilize me before the surgery could take place. I was fortunate in that I had the very best doctors in rheumatology, cardiology and heart surgery they had to offer. I thought for sure I would not make it this time either, and terribly missed most of my family since I was 2-3 hours away.

Well, I made it, however it was a great turning point or revelation of my life. I had a loving husband who was there most of the time and a beautiful little angel who needed her Mom!

No sooner than replacing the heart valve, I began to have many eye problems from this terrible disease. I developed an extremely painful eye condition called iritis (or uveitis). The eye, or eyes in my case, become unbearably painful, inflamed, and blood red. Vision is limited. I was treated with several drops, one was a dilating drop which helps the pain by not letting as much light in. Three years ago, I almost lost my eyesight, wore dark glasses, carried a cane. At that time, I also developed Sweet’s Syndrome, a rare and very painful skin condition.

I also had been on very high doses of Prednisone which lead to weight gain of 80 pounds over a 10 year period. This past August 2003, my husband and I set out to lose weight, mainly for his arthritic knee, so I joined him. To date, as of May 2004, I have lost 60 pounds! I am almost back to my former body weight from 20 years ago!

I have always let Emory University photograph really bad things I come in with. I have hopes that pictures of these things may help others to NOT go through what many of us RP sufferer's have. I have so many hospital "horror stories" as well as miracles too. In my opinion, doctors are not God, and you must always question what is done to you. We, as patients, do not have to accept what we do not like at the hospitals, and doctors are employed by us!

My most recent near death experience was in March 2004. With no warning, I realized I was very ill. I called 911 was taken to the ER. My husband was out of town on business. I was alone until friends heard and came to be with me. I developed pneumonia which lead to sepsis. I spent almost 2 weeks in ICU this time, was allowed to get up while "out of it", resulting in 2 falls. Two months ago, and still in terrible pain, mainly now due to the falls. I almost fractured my femur and have had horrible lower back pain. Therapy seems to be helping - it will just take time.

This illness has really taken a toll on my body, but hopefully I can return to my walks and gain my strength back. Imagine, one day you can feel somewhat normal in appearance, physically and mentally, and the next several days totally wiped out and in bed all day. It's not feeling sorry for yourself, but more like hoping you were "normal" for longer periods of time. Dale looks fine most of the time to people - I can "act" good enough. Any chronic illness does from time to time, cause some form of depression whether you will admit it or not!

God is good. I would challenge anyone who has taken a walk like me to say there is no God!! I am still here! I never say "What's next"? Thanks to all my dear friends who have been there for me. One friend who is battling cancer herself, told me I have the lives of a herd of cats!!

Sincerely,

Dale R

6-10-04

Sue's Story

Just want to welcome the newbies to our wonderful site. This is the best support group around.

I was diagnosed in Sept. of 2001 with a horrible ear flare although I had been having symptoms for almost 2 years. I didn't respond to 40 mg of steroids & had to keep going up until I was on 80 mg. a day. I was soooo sick & not getting any better. The Dr's tried all kinds of additional meds to try to get the steroids down. Imuran was the first but I felt it caused foot swelling so they put me on Methotrexate which caused altered liver function. They put me back on Imuran & I had an allergic reaction. They put me back on Methotrexate & my liver enzymes stabilized. I was able to get the steroids to come down. It wasn't until almost a year later that I was starting to do better. The rheumy had even considered sending me to Mayo because they just didn't know what to do with me. It was around this time that my PCP told me that the rheumy thought I was either going to die or be permanently confined to a wheelchair. Let me tell you that neither came to pass. I do use a cane when I am out alone & have an electric wheelchair so I can get around when we go to craft shows or shopping if there is going to be a lot of walking. My right achilles tendon ruptured almost 2 years ago & that is the reason I use the cane because since it's been weakened they never know when it will go again. I was on 5 mg of pred for quite some time until my nose flared recently.

I have not had a serious flare in my ear since then although my nose has flared from time to time. I am currently trying to get rid of a nose flare. I am down to 25 mg of prednise gradually decreasing by 5 every 2 weeks from 40 mg. I am also on 20 mg of Methotrexate & my liver function is normal. I am feeling fairly good although I've been getting tired again recently. I have been doing a lot of things I know I shouldn't but when I feel good I have to do things.

We did have to sell our house because of this darn old RP and bought a manufactured home which was the best thing we ever did. It's all one floor & has given me back my independence. My health has evened out since we moved. I wonder if living near O'Hare airport & all the jet fuel & traffic fumes from the tollway could have played a part in how sick I was. Here the air is clean, we're in the country. Before we moved you wouldn't have caught me in an electric cart at the stores but since we have moved I use them all the time. It's very hard to come to grips with this & admit that I have a serious disease but a positive attitude helps immensely.

Yes I get depressed & who wouldn't when you live with a chronic disease but since I stared death in the face & am here & doing well I count my blessings every day. I would not have got through this if it had not been for this group. They were there to boost my morale through it all & none of us really knew exactly how sick I was which was probably for the best. I wanted to give up many many times but this group talked me out of it.

I've told my story so you know that some of us have been through the mill & back & it does get better.

Love & prayers to all of you who are not doing well at this time. One day at a time does help although it doesn't seem like it at the time.

Sue S.

5-03-04

Claudia's Story

Thinking back now, I can see that I must have had RP symptoms for years. As a child, my ribs and joints always hurt. In my early 20's, I was diagnosed with costochondritis and TMJ. It now all fits together.

My very first real flare of my ear was in 1998. I felt my ear getting sore and thought I had slept on it wrong. Finally, it was too painful to bear and I was diagnosed with it being cellulitus from a bug bite (although they found no bite).They put me on antibiotics for 2 weeks (daily injections). It finally went away. I didn't have another flare until a year later. I was treated the same way. By the end of the first week I insisted on seeing an ENT. He looked at me and said I had Relapsing Polychondritis. He had seen one case in medical school. He put me on Prednisone, but didn't know how to treat it long term. He thought Dapsone. Told me to go read up on it on my computer. Well, I didn't have a computer then, but I did find one article in a book I had. Didn't sound like anything to worry about. I had no knowledge of Autoimmune diseases or how they really affected us.

I started to flare about 6 weeks after I would finish up on a dose of Prednisone. I finally found a rheumy. He started me on Vioxx and Pred. This worked for about 6 months, then he started me on Methotrexate. I had to change rheumy's because he said I just had TOO many things wrong with me for him to handle. (Poor guy, I think I scared him. :) I found another one 3 hours away. He kept me on Metho for over a year and I still was on high doses of Pred. I insisted that we try something else. He put me on Imuran and unfortunately I was unable to take it.

I went to Stanford and was put on Plaquenil. This and the Pred seemed to work for me. I was able to get my Pred down to 7mg. By now it was 2001. My cardiologist had found that I had aortic insufficiency. He sent me to the cardiologist at Stanford. I helped to educate them about RP. (By now I had a computer, had been in the support group for over a year, and had learned a lot.) They gave me a great team of doctors there. (ENT, rheumy, pulmonologist, ophthalmologist, cardiologist) They did an angiogram and found that my aortic valve was worse than the echocardiograms had shown. So they had to replace my aortic valve and root in July 2002. The cardiac surgeon had never seen a valve that was damaged the way mine was. He said it was from the RP. The valve leaflets had fibrosed.

After the surgery I had rib flares and had to increase my Pred back up to 20mg. I was started on Enbrel in 2003 and did very well along with the Prednisone and Plaquenil.

It is now June 2004. My heart is doing well, but now my lungs have developed something in them. I will have an open lung biopsy on 7/13/04 to determine if it is RP, some other autoimmune disease, or something all together different. The CT showed it was inflammation and scarring.

I have a moon face, hump on my back and have gained 70 pounds since being on Prednisone. I am back down to 10mg and hoping to be off it completely one day.

The RPolychondritis Support Group has been a life saver for me in so many ways. They have educated me, and in turn I can help to educate the medical professionals. I refuse to give in to this disease and will NOT let it win. I plan on being in the RP playground real soon.

Claudia C
6-5-04

Veronica's Story

I started having symptoms of RP in Oct 97. My eyes were red and my Family pcp could not get rid of it with anything. I was put on Claritin-D, I knew it wasn’t allergies, my 3 sisters battled allergies symptoms growing up, and I never had the problem. I never got sick at all. Well the PCP that I had chosen as my family doctor was a poor excuse for a doctor. He never once thought to run any blood work on me. During the initial onset of the symptoms I was having, and after one month with my eyes still red, but now their sore, I told him, with the encouragement of co worker’s, suggested that I demand to be referred out to an Eye specialist. Yes I was with an HMO, and this doctor wanted to treat me, he had all the answers and his staff also. I hated when I had to call his office.

Well by the time I got to the Ophthalmologist I had a racing pulse, though I was still claiming to being fine, she took one look at my eyes and said that the redness and pain was from inflammation. She asked if I was sick with any other major illness, I said no, I have never been sick at all. Well I’m 23 years old and I wasn’t as worried as I should have been. I thought that with some medicine and antibiotics I would be well soon. She ran blood work on me after I told her my primary care doctor hadn’t ran a thing. She called my doctor and I don’t know what she told him, but his whole treatment toward me became more attentive. This doctor, my PCP, would get mad at me when I had to page him in the middle of the night, because I was in pain, and I had to get approvals before I went to the emergency room, I couldn’t just go, not with an HMO, or it wouldn’t get paid for.

Now by this time, December I am told that I needed to be seen by a Rheumatologist, because my sed rate was at 99%. The normal was 0-20. I’m still not scared. I just didn’t think I was this sick. I went to the Rheumy 2 weeks later I am diagnosed, it’s Jan 8, 1998. I went on disability from my job, I eventually quit. I then started working for another company.

I was getting sicker by the day and was in denial that my breathing getting worse. I was short of breath. I couldn’t do a lot of physical activity. I felt like crap. By May of 1998, I was now seeing a pulmonary doctor, and ENT, and then I finally left my PCP after the indirect advice of another doctor. That was the next best thing I did. For the rest of the year, I was in and out of the emergency room at least 7 times. By Jan of 1999, my body was tired. I went to the ER in on hospital and ended up transferring to a medical school. I would end up spending 2 months in the hospital total.

The chief surgeon at the hospital would not touch me until he talked to other specialist away in a conference in another city. He took my medical records and came back with a plan, and he told my parents what he planned to do, and that once he performed this surgery, he wasn’t sure I would make it or if the surgery would work period. I would be gone for sure with out any intervention. I got a trach because of my deformed subglottic area by the vocal cords. My left main bronch collapsed and narrowed so they put a stent in. My surgeon told my parents that it would probably take 16hrs to do the surgery, and once he was complete, he didn’t know if it would work. Air was not passing. I was in good physical shape so I controlled my breathing well, but eventually I was just to tired to continue to push the air in and out of my lungs and I just stopped breathing.

Well, It only took 3 ½ hrs. I needed blood, because my blood count dropped. Everything worked out. I am still managing fine with my stent. I needed a new stent in Jan 2001, because the first stent that was put in was a wire mesh stent. This stent was supposed to hold open my collapsed airway, and still allow the cilia to function. Well tissue grew all around the stent and started blocking it. This is why I see the stent specialist in San Diego, he corrected the problem and took the old stent out and put a new silastic stent in, and it works fine. The good thing about this stent is that it can be removed very easily, and I have done well with it. This stent has helped me do things that I used to do before I got sick. I can work out longer, where as before the stent I could not work out at all. Well that’s my story. I have had RP now for 6 years, and got my Trach and stent 1 year after being diagnosed.

Take care,

Veronica Harvey, TX

5-27-04

Another thing, I do believe when I was younger that the RP was coming out, in my knees and ankles. They would get sore and swell and then go away. I never played sports in school and wasn’t rough at all. I know that this is what explained every thing growing up. I would get bad nose bleeds, certain fingers would get so sore. My parents did take me to a doctor, but this doctor just said I probably hurt myself in my gym class or something, I don’t think they took me seriously at all.