kaesara
06-12-2006, 03:58 AM
Hello,
I have been dealing with SLE , Fibromyalgia since 1995, totally disabled since 1997. My Internal Med Doc put me on Pred back in January at 80 mg a day. By the first of March I was on 20 mg a day. I am overweight and couldnt afford to gain any weight, the flare was just so severe that it was necessary for me to go on the Prednisone.
I knew that I couldnt come off the Prednisone fast but didnt dream that I would still be on it this long. I have gained about thirty pounds since January when I started on the Pred. It is hard to say what an accurate weight is because I have such severe pitting edema in my feet and legs, my legs pit all the way to my knees. I have to take two different diurectics or I overload with fluid and cant get my breathe, I am on oxygen at home and when I have to get out I take oxygen with me everywhere I go.
I had shortness of breathe before but it has gotten much worse over the past four to six weeks. Just walking a few steps in my house causes me to be very short of breathe.
I started to see a new Rheumie about two and a half months ago. He has done many investigative , diagnostic test and has found out a lot about me that my previous Docs didnt know.
I have Pulmonary HTN, the anticardiolipin antibodies came back highly elevated, my vitamin D levels are very low more than half below what they should be, and my twenty four hour urine came back with a creatinine clearance of 30 , 70 is the norm according to my rheumie.
The rheumie set me up for an adenosine stress test. I went for that test and they couldnt complete the test because they couldnt get a vein to hold up to administer the IV drugs. I have bad veins and all of the swelling in my tissues made it even harder for them to try to get the IV. The Cardiologist and my Rheumie have decided not to try to complete the test. The receptionist called to tell me this and didnt say why. My Rhuemie previously mentioned that he thought they needed to do a Cardiac Cath anyway because of the Pulmonary Hypertension. I am assuming they are going to skip the adenosine test and go straight to the cardiac cath.
I see the Nephrologist soon for a work up and biopsy because of the abnormal Creatanine clearance . I have also shown protein and microscopic blood in many of my routine u/a's.
Since January I have had THREE outbreaks of shingles.. OWIE.. those things hurt so bad... , I have never had them before but understand that they are quite common when immunosuppressed. I have also had cellulitis that has returned twice that came as a result of a pedicure where the tech broke my skin with abrasive sea salts.
Lately I have felt very discouraged. I have such SEVERE FATIGUE. It is so hard for me to get up the energy to take a shower. I shower daily but it is an ordeal. I feel that I am just existing. I try to have an attitude of gratitude and think of all the things that I have to be Thankful for.. but there are those times that I just feel that I have to vent. I am trying so hard not to overeat on the Prednisone. My Rheumie has put me on Imuran and hopes to get me off the Prednisone but wont make any promises about how far away it is in the future. He did a lab test that shows I am a slow responder or metabolizer of the Imuran. I suppose that is going to effect the outcome regarding the Pred. I wonder how long it will take him to get me down from
20 mg to off the Pred once he starts reducing the dose. I dont even look like myself. My face is so MOON shaped.
When I first started on the Prednisone it was wonderful. After a week I felt like a new person. I was able to do more than I have done in years. I couldnt believe how wonderful it felt. I had so much False energy from the Prednisone. I sure had my bubble burst when the tapering down started.
I have to leave Weds for a four and a half hour trip to see the Doc at my Pain Management /Fibromyalgia Treatment Center. I so dread that travel with the way I am feeling. Fortunately my Fiancee and I will stay over the night before the appt and return as soon as my nine am appt is finished. It takes me a week sometimes to get over that trip.
I really needed to vent. I am feeling so unattactive, so weak and fatigued and just sick and tired of all of this. I want to live my life .... not exist inside my apartment. I want to be able to give to others instead of feeling that I am a burden to others.
I hope I am making some sense. Surely someone can relate to how I am feeling.
Sincerely,
Kaesara
I have been dealing with SLE , Fibromyalgia since 1995, totally disabled since 1997. My Internal Med Doc put me on Pred back in January at 80 mg a day. By the first of March I was on 20 mg a day. I am overweight and couldnt afford to gain any weight, the flare was just so severe that it was necessary for me to go on the Prednisone.
I knew that I couldnt come off the Prednisone fast but didnt dream that I would still be on it this long. I have gained about thirty pounds since January when I started on the Pred. It is hard to say what an accurate weight is because I have such severe pitting edema in my feet and legs, my legs pit all the way to my knees. I have to take two different diurectics or I overload with fluid and cant get my breathe, I am on oxygen at home and when I have to get out I take oxygen with me everywhere I go.
I had shortness of breathe before but it has gotten much worse over the past four to six weeks. Just walking a few steps in my house causes me to be very short of breathe.
I started to see a new Rheumie about two and a half months ago. He has done many investigative , diagnostic test and has found out a lot about me that my previous Docs didnt know.
I have Pulmonary HTN, the anticardiolipin antibodies came back highly elevated, my vitamin D levels are very low more than half below what they should be, and my twenty four hour urine came back with a creatinine clearance of 30 , 70 is the norm according to my rheumie.
The rheumie set me up for an adenosine stress test. I went for that test and they couldnt complete the test because they couldnt get a vein to hold up to administer the IV drugs. I have bad veins and all of the swelling in my tissues made it even harder for them to try to get the IV. The Cardiologist and my Rheumie have decided not to try to complete the test. The receptionist called to tell me this and didnt say why. My Rhuemie previously mentioned that he thought they needed to do a Cardiac Cath anyway because of the Pulmonary Hypertension. I am assuming they are going to skip the adenosine test and go straight to the cardiac cath.
I see the Nephrologist soon for a work up and biopsy because of the abnormal Creatanine clearance . I have also shown protein and microscopic blood in many of my routine u/a's.
Since January I have had THREE outbreaks of shingles.. OWIE.. those things hurt so bad... , I have never had them before but understand that they are quite common when immunosuppressed. I have also had cellulitis that has returned twice that came as a result of a pedicure where the tech broke my skin with abrasive sea salts.
Lately I have felt very discouraged. I have such SEVERE FATIGUE. It is so hard for me to get up the energy to take a shower. I shower daily but it is an ordeal. I feel that I am just existing. I try to have an attitude of gratitude and think of all the things that I have to be Thankful for.. but there are those times that I just feel that I have to vent. I am trying so hard not to overeat on the Prednisone. My Rheumie has put me on Imuran and hopes to get me off the Prednisone but wont make any promises about how far away it is in the future. He did a lab test that shows I am a slow responder or metabolizer of the Imuran. I suppose that is going to effect the outcome regarding the Pred. I wonder how long it will take him to get me down from
20 mg to off the Pred once he starts reducing the dose. I dont even look like myself. My face is so MOON shaped.
When I first started on the Prednisone it was wonderful. After a week I felt like a new person. I was able to do more than I have done in years. I couldnt believe how wonderful it felt. I had so much False energy from the Prednisone. I sure had my bubble burst when the tapering down started.
I have to leave Weds for a four and a half hour trip to see the Doc at my Pain Management /Fibromyalgia Treatment Center. I so dread that travel with the way I am feeling. Fortunately my Fiancee and I will stay over the night before the appt and return as soon as my nine am appt is finished. It takes me a week sometimes to get over that trip.
I really needed to vent. I am feeling so unattactive, so weak and fatigued and just sick and tired of all of this. I want to live my life .... not exist inside my apartment. I want to be able to give to others instead of feeling that I am a burden to others.
I hope I am making some sense. Surely someone can relate to how I am feeling.
Sincerely,
Kaesara