Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 well, sunday the 1st, the pain got so bad, I ended up back in the ER. they were afraid there was something really wrong so they did a CT. Found nothing out of the ordinary. Then they did a spinal tap thinking maybe I had meningitis. Nope. sooo since I was scheduled for an MRI the next day and my pain might return, they admitted me. The MRI showed nothing more than a sinus infection, no cancer. I had to do yet another spinal tap to test the pressure this time and yep, I do have too much pressure in my spinal column, thus the pseudotumor cerebri. so after eleven days of misery and three days in the hospital, I just have to take a diuretic twice daily and percocet for pain. go figure. I also get to add on a neuro-opthamologist to my list of chiefs I'll see on a regular basis. jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Jen what a RELIEF! Well as much as a relief as it can be after all those tests. ) Thank all the powers that be that it wasn't cancer. After all that you have to be wanting to jump for joy only having to take a diuretic to make it go away. Sitting here with a smile on my face for you, Amy update on > well, sunday the 1st, the pain got so bad, I ended up back in the ER. they were afraid there was something really wrong so they did a CT. Found nothing out of the ordinary. Then they did a spinal tap thinking maybe I had meningitis. Nope. sooo since I was scheduled for an MRI the next day and my pain might return, they admitted me. The MRI showed nothing more than a sinus infection, no cancer. I had to do yet another spinal tap to test the pressure this time and yep, I do have too much pressure in my spinal column, thus the pseudotumor cerebri. so after eleven days of misery and three days in the hospital, I just have to take a diuretic twice daily and percocet for pain. go figure. I also get to add on a neuro-opthamologist to my list of chiefs I'll see on a regular basis. jen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 Betsy, I'm so glad to hear things have stabilized. Pierre update on This is an update on my son ¹s condition. For those who are new, he is 24 and had a transplant in 2001 and then had a toxic reaction to Prograf (an immunosuppresant) last spring and biopsy at that time indicated a recurrance of the IgAN. He stopped taking ProGraf and started Cellcept but had a very bad reaction to that and ended up in the hospital with uncontrollable vomiting and then fluid overload, all occurring as he went into nephrotic syndrome. It was very frightening and we thought for a while he might lose the new kidney. He had Cytoxan infusions once a month for 6 months, ending in Nov. along with increased dosage of Prednisone (IV blasts while in hospital and then 60 mg. orally after). The plan was to continue the Cytoxan every three months for a while longer as a preventive measure. However, he went back to the transplant clinic at the end of January and the lab results indicate things are stable now (creatinine staying around 2.2 2.4), and although there was some permanent damage to the new kidney, it is much less than was feared at first. His neph commented that Cytoxan was a good ³rescue² drug but not a great maintenance drug and that there had been lots of good reasons for him to be on Cellcept when that was tried before and those reasons still existed. So they decided to stop Cytoxan and to very carefully attempt Cellcept again, starting with a half-dose and taking Prilosec to reduce gastric effects. I was very nervous about him trying Cellcept again, but other than mild nausea the first day and some stomach pain the second day, he has done fine with it. He has been tapering the Prednisone since Nov., and the plan now is to continue that and gradually increase the Cellcept dosage. is very eager to get the Prednisone dose down low enough to get rid of the moon face. He started a new job last August and feels bad that no one there knows this isn¹t how he really looks. So we are hopeful his face will regain at least some of its old contours, but overall we are so pleased that things have stabilized and that he is doing so well. Thanks for all the concern and prayers from this group! Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 , Great to hear that tolerated the IV treatments well! I didn't have many problems with mine except for being very tired by the second day, looking a bit pale, and being shakier than normal. I've been on high doses of prednisone orally for the past 5 months now and my protein spill is near 0. I'll find out what my current level is next Tuesday as I just finished my latest 24hr collection today and all the labs to go with it. Tell to watch that appetite...steroids are notorious for making you put on the pounds. Tell him good luck and I hope he continues on a bump free path. And here are a few ((((((((Hugs)))))))) for you mom. ) Amy Quote Link to comment Share on other sites More sharing options...
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