In November a week before Thanksgiving, I went to see my GP and tell him I was feeling rather weak and even more tired then I have ever been in the 9 years I have had lupus. My blood pressure was lower than normal and my heart rate was kinda slow, so he sent me to the emergancy room. While there they naturally took blood and urine, next thing I know I am being put in ICU in renal failure and my potassum (spelling) was 6.9. The next day I went threw 4 1/2 hours of dialysis. I ended up being in ICU for 5 days,and the hospital a week.
They changed some of my meds, yet nothing they did would bring my blood pressure back up into a normal range. My creatinine was sitting at 6.9 as well, when I finally left the hospital it was down to 2.8. I was removed from taking my cyclesporin and placed on cellcept, they took me from 1000 mg a day slowly to 2000 mg a day to let my body get use too it. once I hit 2000 mg I was slowly removed from the 40 mg of steriods. My creatinine a week later was 1.1 and has remained at that. They said it was the cyclesporin but now I am staying in one flare up after another, I am in so much pain from my muscles and when my legs were swollen from the water gain I had, blistered and cracked, are now dried out like old burnt skin, the sores and cracks are not healing and I am in so much pain.
My legs from the knees down feel like they are on fire and several thousand needle pricks, they have me on lyrica 75 mg, which stops the pain somewhat, they also have me on laratab but I stopped taking it because it did nothing but make me even more tired. My joints are all sore and swollen, I am lucky I am able to type this right now because my hands and fingers are swollen and ache.
I have never ever felt like this since being told I have lupus. The doctors can not explain my legs, since the swellen has been gone since I left the hospital, they just look at it, agree it looks bad, agree that is has got to be painful one even said wow that looks yukky. I feel like the cellcept is not working, but I have been told that this is the last drug they can give me since I have tried all the others in the pass and they did not work. Well the cyclesporin worked except it was not kidney friendly. The other new rule all my meds have to be kidney friendly. They have mentioned Rituxin again but because the FDA still has not said it have been tested for lupus my insurance company will not cover the cost.
I feel like my hands are tied and I am at the end of my road. I continue taking the cellcept with hopes it will kick in again whille we battle FDA, state laws and insurance companies, and we all know that battle is lost before we even start it. The other option given to us is for us to move to a state that allows the use, so the insurance company will pay for it. Which means I give up my wonderful doctors here, my husband gives up his job he actually loves and we move possibly to a state that might ok it. But anyways this is why I have not been posting, kinda have my life in a free fall waiting for me to hit bottom.
They changed some of my meds, yet nothing they did would bring my blood pressure back up into a normal range. My creatinine was sitting at 6.9 as well, when I finally left the hospital it was down to 2.8. I was removed from taking my cyclesporin and placed on cellcept, they took me from 1000 mg a day slowly to 2000 mg a day to let my body get use too it. once I hit 2000 mg I was slowly removed from the 40 mg of steriods. My creatinine a week later was 1.1 and has remained at that. They said it was the cyclesporin but now I am staying in one flare up after another, I am in so much pain from my muscles and when my legs were swollen from the water gain I had, blistered and cracked, are now dried out like old burnt skin, the sores and cracks are not healing and I am in so much pain.
My legs from the knees down feel like they are on fire and several thousand needle pricks, they have me on lyrica 75 mg, which stops the pain somewhat, they also have me on laratab but I stopped taking it because it did nothing but make me even more tired. My joints are all sore and swollen, I am lucky I am able to type this right now because my hands and fingers are swollen and ache.
I have never ever felt like this since being told I have lupus. The doctors can not explain my legs, since the swellen has been gone since I left the hospital, they just look at it, agree it looks bad, agree that is has got to be painful one even said wow that looks yukky. I feel like the cellcept is not working, but I have been told that this is the last drug they can give me since I have tried all the others in the pass and they did not work. Well the cyclesporin worked except it was not kidney friendly. The other new rule all my meds have to be kidney friendly. They have mentioned Rituxin again but because the FDA still has not said it have been tested for lupus my insurance company will not cover the cost.
I feel like my hands are tied and I am at the end of my road. I continue taking the cellcept with hopes it will kick in again whille we battle FDA, state laws and insurance companies, and we all know that battle is lost before we even start it. The other option given to us is for us to move to a state that allows the use, so the insurance company will pay for it. Which means I give up my wonderful doctors here, my husband gives up his job he actually loves and we move possibly to a state that might ok it. But anyways this is why I have not been posting, kinda have my life in a free fall waiting for me to hit bottom.
