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Dawn's Story You have Relapsing Polychondritis. This was the first time I had ever heard of this disease, but I sure knew the symptoms. About 6 years before this I had started having really weird symptoms that no doctor could put a name too. I was in the hospital because they thought I was having a heart attack. I was put through angioplasty to open my arteries but they found that the arteries weren't blocked. Now, when we look back at this episode I know that this was the first of many rib flares I was to have.
Next my eyes turned the color of blood and swelled shut, it was so bad that the doctor thought someone had hit me in the eyes. Again, we now know that this was my first eye flare. My flares then decided to move on, my nose, eyes, and left ear swelled and turned bright, red then purple. Each and every time was given Prednisone in a Medrol dose pack and the flare would go away. Several times my face would swell and the doctor would think I had another sinus infection and would give me antibiotic and pred and each time the swelling would go away.
During all of this I started having severe dizziness and my joints would swell and hurt. I was sent to a neurologist She thought I had MS and I was given an EMG (by the way I will never go through this test again). The test was inconclusive but showed borderline inflammation with an elevated SED rate. Since this test showed inflammation I was then put through a muscle biopsy, again it showed inflammation. I now know, that the inflammation was coming from the cartilage that surrounded the muscles.
After going through all of this, now both ears swelled up I was put on pred again, the ears would go down I would stop the pred and the ears would swell back up. This went on for about 3 months, finally my Dr at the time called an ENT and a Rheumy and was on the phone with them for 3.5 hours, that is when he called me, and told me what he thought I had. Also, we had not been using a high enough dose of pred to get rid of the flare so I was told to up the pred to 80 mgs and to see the rheumy the next week.
When I went to see the rheumy he looked at all of my tests and also asked a lot of questions. This man was supposed to be a specialist and know this disease, so I was putting a lot of trust in him. Well I learned from my own research, and I stress my own research, what to believe and not to believe. I was told correctly that I did, and do, have RP, but I was told incorrectly about a lot of other things. Such as RP doesn't affect your trach. Not true, but I found this out the hard way.
I started off with naproxen 500mgs 4 times a day. This did nothing for me, didn't even slow the flares down. I would go from ear to ear and then to ribs and back to the nose, and so on and so on. Each time back on pred and each time the flare would leave, I found out later that this is typically true of RP patients they will respond very quickly to the pred. After several arguments with the rheumy about types of meds that I should get because he didn't want to give me anything at all, he reluctantly put me on methotrexate, 7.5 mg per week. I still would go into a flare. A few weeks later He upped my metho to 25mgs. I seemed to level off for a while, then things started going downhill again. I went back to the rheumy and he refused to change anything. He then basically told me it was all in my head. I was so angry when I left there that I was in tears. I then started my search for my new Dr. I made up my mind that I would not go back to him. I had found out that a lot of Dr's do not have any compassion for their patients and this is especially true of rare disease patients. My feeling is that they don't know what to do with us, so they try to make us feel like it’s all our fault that we are as sick as we are. I like what my internist said to me, “This can't be in your head because you have to many outward symptoms that a Doctor can see for it to be in your head.” So goes my search for a new Doctor. In April of 2002 I was at work and started to say something to a parent at work and I could not speak, my trach had collapsed after weeks of coughing. I had been coughing ,and that’s another thing my rheumy tried to lay off as being in my head. My throat had burned and hurt but I didn't have a "sore" throat.
This time I found myself in the ER with the Respiratory Therapist starting at me with a very scared look in his eyes. They tried all kinds of things, starting with the usual breathing treatments for asthma, but when your not moving much air, you can't breathe in enough albuterol to clear the airway, so then they gave me epinephrine, and that seemed to do the trick my throat at least opened up enough that I could get air. Then I was placed on major doses of solumedrol, 125mgs every 4 to 6 hours, with breathing treatments along with that. After a couple of days I seemed to be much better. This is when I found my new Dr that I dearly love and truly trust. She admitted that she didn't know anything about RP, but she was willing to learn what it was, that’s all I can ask. Not only did she learn about RP, but she willingly called Dr. Buckner and learned from one of the best as to what to do or not do. Now I am finally on some meds that work and have a wonderful Dr that I trust and that is half the battle. There is a lot more to this story but not enough time or space to give it all.
As you can see, I have been put through a lot to learn what I have, most will find that the disease will take a while to get diagnosed, but what I would recommend, is that once you know what you have, read, read ,read, learn, learn, learn. You will find some doctors knowledgeable and some will only act that way. So you need to know for yourself what is true or not. Ask questions and learn what you can. A good relationship between you and your Doctor is a mandatory thing for this disease. If I am a one in a million that has RP, then I have the right to have a Dr. treat me like I am one in million, and give me the best that they have. Dawn M 6-1-04 |
Don's Story In the summer of 1996 my husband Don Main came down with red swollen Ears. He went to our Fam. Dr. to get it check out. Well this Dr. did not know what it was and said hey you are healthy and it will go away.( We no longer use this Dr. )
Well by Jan of 1997 the Ears turned Purple and where so swollen to the point he could not even put on a T-shirt. Or sleep on his sides. So he went to a Ear Dr. and he did not know what it was either but thought it was a blocked lymphnode. So he gave him a strong Antibiotic and told him to come back in 3 days. Well 3 days later there was no improvement what so ever. So this ENT Dr. send him to another ENT and this new ENT Dr.diagnosed him right away. That was in Jan of 1997. ENT Dr. told him he will need a Rheumy Dr. for this RP and set him up with the Rheumy Dr. the next day. The Rheumy Dr. confirmed the Diagnose and started him on Prednison 40 mg and 800mg 3 x a day Ibuprofen. He also added medicine to protect his tummy because all the RP meds can and will in time mess up your tummy. He also added a few Vitamins to go along with his Meds.
Ok when we found out what we are dealing with we only found very scary information on the Internet. Of course that scared me so bad I made a appointment right away with the Mayo Clinic in Rochester Minn. That was the best choice we ever made.
The gave him a examination from top to bottom. Thank God the said he has only RP and no other diseases. Sorry to say the also could NOT tell us how he got it or why. But the did teach us so much about RP and now we know that it is not a death sentence. We also learned it does takes a team of Drs. to keep an eye on his whole Body. Rheumy, ENT, Eye , Lung , Heart , and his Primary Dr. The all work together when there is a problem. In end of 1997 the ENT Dr. did a scope on his sinus and discovered Don had 2 holes inside his nose where the Cartilage was gone. Yes Don had a lot of problems with his sinus so we thought but it was the darn RP after all.
And in Oct. of 2003 the ENT Dr. did another scope of his sinus and to every ones amazement discovered the 2 holes where healed back in and his sinus and nose is in great shape now so are his ears. But please understand this Don NEVER missed any of his Medicine or Vitamins . He always took it on time like he should.
And I am happy to say it paid of. His RP went in what I call in a sleeping mode 2 years ago. Yes we do Pray every day that is where it stays. The other thing is when you finally do get to cut back on your Prednison please do it very slowly !!!! Yes it took Don almost 1 year to come off of all his RP meds. In that year and the following year he did have a lot of joint and muscle pains.
But that was from being on all the RP Meds for so many years. His body just needed that time to readjust it's self. Once he was off all RP meds he also started to loose all the extra weight he had gained from the RP meds. Yes Don does see all his Drs. once a year for a complete check up. He is doing very well at this time. Thank God . So my advise is please Take your Medicine and Vitamins ON TIME EVERYDAY like you should and with God's help you just might get this in a sleeping mode also. Never give up your faith and hope. Learn as much as you can about your Body and RP and in time it just might go in a sleeping mode for you too.
Wishing you the very best and know we are here always for you if you need us. We know what you going through and have lots of shoulders to lean on. May God bless you and your Family.
Hugs Heidi Main 5-16-04
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| Elizabeth's Story I was diagnosed when I was 41. I was going to doctors
I was the 76th case reported in this country and most of the ones before me didn't survive. At that time there were 8 articles in all of medical literature in this country about it. So doctors rushed in with cameras to take pictures of my red ears--my, I was famous here in Boston medical circles. Still am asked to let residents look at my ears... We are a very exclusive group!
I'm the one who has had polychondritis for almost 36 years
5-10-04 |
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Susan's Story I do consider myself in remission, even though my doctor will only say this: I'll say you are in "partial" remission. LOL I do still have mild flares, like right now, but I am not on any medicines for RP at all and haven't been for over a year now. I have had to take one dose pack of pred for a minor flare that was stubborn, but other than that, I just follow Dr. Heidi M's prescription of Ibuprofen and that usually always makes the small flares go away. When I was first dx I was put on the usual high dose of pred. Then was on a maintenance dose for years and when that stopped working my primary doc sent me to my first Rheumy. He told me to make my will............... Next Rheumy was also a quack and said there was nothing else he could do. Finally found a good Rheumy and she started me on Dapsone and pred. That worked for a couple of years, then the flares came back worse than ever. Then went to Imuran and got up to the maximum dose that I could take. Because of that, I was able to get off the Pred completely. After being on the max dose of Imuran for a few years with little flaring, I asked to my Rheumy if I could start weaning myself off the drug to see if I could tolerate it without flaring. She agreed, mainly because she knew I knew almost as much about this disease and my body as she did. It took some time, but finally I was off all drugs for RP and I'm doing great now. I really believe that leaving my old job where I was around a lot of chemicals and setting my mind to be rid of this disease has helped me enormously!!! I have had RP for over 12 years now. There is hope out there and just wanted you to know that I did it and hopefully so can we all. Susan W, VA
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