Re: Re: questions

[Guest guest]

, unfortunately, fatigue is part of the disease, however, once you are on the proper meds, your doctor will be able to prescribe something that may help you. I know that while I am always tired, I am not always exhausted! A lot depends on the drugs you are on, one of the side effects of methotrexate is fatigue, it's also a side effect (for me anyway) of Pred. For some people, pred wires them for sound! I alway hoped I'd get that reaction, but, alas, I got the fatigue instead. <My worst side effect is hunger! I am always starving! And there is really nothing I can do about it, it is a side effect of Pred, which even once I get off it (again) it takes six months before it it completely out of your system. And I have yet to be off it for six months, something always happens and I end up right back on it. Remember each of us is different, just check out symptoms!, and each reacts to medication differently. For some people, methotrexate (which I am on) doesn't work at all; for some Imuran does the trick! Everyone is different, which is why they use so many different drugs to keep the symptoms at bay. The first thing you need to do is to find a good rheumatologist, (Do you already have a dx of RP, or is this someone's guess?) If you do have RP, he/she will start you on meds and try to determine the ones that are best for you. Hopefully, once you are under control, your life CAN become pretty normal, no promises, though - there are no promises or sure things with RP which is part of the frustration of this disease! Hang in there, get a good rheumy, and start of treatment. Hopefully once you are under control, like will resume some semblance of normalcy. Take care, Judy New Member story and questions>> Dear Group;> I just wanted to introduce myself. My name is and I'm> originally from North Carolina, but currently I'm a seminarian in> Washington, DC. I've been here in DC for almost three years now.>> First, thank you for creating this group. I'm sure it will prove> beneficial to me as I try to sort through over 48,000 messages!>> Second, last week, on my 27th birthday no less, I was diagnosedwith> Relapsing Polychondritis. I had never heard of it before. I'm sure> most all of your stories are the same, so I'll keep mine brief. I> grew up a healthy kid and played some sports in high school. The> year I went off to college I had some health problems. I justdidn't> feel so good. Student health determined that I was diabetic. Well,I> had put on several pounds my freshman year, and after dieting I was> able to regulate my diabetes via diet and exercise. By the time I> graduated, I had to be put on several medications to help regulate> both the diabetes and the effects of the disease. In January of> 2001, a year and a half after entering seminary, I had an incident> of A-Fibrillation. It lasted 37 hours and I was in the CICU for> three days. The electrical systems of my heart began to fail even> though my heart muscle was just fine. After regulating this event> there were a few others that required hospitalization. But,> eventually it was regulated. However, I never felt better. Istarted> having cases of colds that wouldn't go away, bronchitis that seemed> to come and go not paying attention to any cough medicine I was> taking. Last year I also started losing weight. I dropped almost 50> pounds. Sometime in August of last year a lumps developed> simultaneously on my right ear, in my throat, and believe it ornot,> in my right eyelid. I went to student health, bad mistake; they> treated me for months like I was crazy. Finally, I went to an ENT.> He did a surgical biopsy and found that these lumps were cartilage> in a state of degeneration. The scary part was the rate of growth.> They started out as an annoyance, but began to cause some pain by> October of last year. Finally, my ENT recommended a rheumatologist.> I saw him in January. He took tons of blood work tests. He alsosent> me for a pulmonary test and reviewed my history. By February there> were some problems with the veins in my legs and with numbness inmy> hands and feet. By now I've lost nearly 60 pounds and I felt tired> all the time. My lab work showed that there was swelling somewhere> in my body. I believe he said my C Reactive Protein something was> almost 50 and the Westergren ESR test was 50. There were othertests> that pointed towards swelling as well and the pulmonary tests> concluded that there were airway restrictions. So, as you canguess,> on March 11th the doc told me that I had something that wasn't too> common called Relapsing Polychondritis. He said it wasn't a good> thing to have. He is sending me for an MRI of my throat todetermine> the extent of the damage there since it is now difficult to swallow> without overcoming the lump and hearing a loud clicking sound. He> may start me on steroids and cortisone shots, but because I am> diabetic he is not sure how I will react.>> So in addition to sharing my story, I wanted to know if anyone else> has had electrical problems with their heart develop as a result of> this illness. My doctor and cardiologist don't know of any links,> but it does seem related since the RP became troublesomeimmediately> following the heart problem.>> Thanks again for this group and your support. You are allremembered> in my daily prayers.>> Sincerely,> >>>>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THATIS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOURDOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT ASUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBEREVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US.THANK YOU>>