Hi there :)
This is my 1st posting..ever..4 anything(yikes..Ima rookie haha:)..and could use some advice :O I was recently(12/3/10) dx with a rare Kidney Disease called MPGN TYPE 1 also known as Membraneoproliferative Glomerulonephritis Type 1 after having a Kidney Biopdy done. Here's how it all began...I noticed one day that my socks were leaving indentions, thinking it was kinda funny, I told my husband. Well..since my mentioning of my now famous 'sock marks' :/ It ended up my Kidney's are not filtering the protein. Now with my Kidney's showing signs of shutting down, my Dr now had to find the underlying Dx. as to why this was happening. After much bloodwork,tests n more tests..and none having come back text book results..ugh! I was also told I had Kidney Nephritis, and Idiopathic Autoimmune Disease. My Nephrologist put me on 60mg of Prednisone. After 1 month on the meds a repeat 24UA showed that the protein only went down from 2400mg to just under 2100mg..with my 1st 24UA being at 2800mg)..I was thinking..sweeet! it was heading in the right direction..but nope :( actually meant the Prednisone wasn't really working. I was on it for 6 wks at the time...worst med...EVER!! went days with no sleep,anxiety,insomnia, I'm sure my poor Hubby n little girlies thought I lost my marbles :O also got tons of canker sores in my mouth, but actually ended up LOST weight..weird eh? I was told 2 restrict my protein,sodium, and potassium in my diet.(I probably went a tad overboard..BIG TIME( I was really scared of the wt gain, I work hard 2 stay in shape/healthy I have a pretty active family!! :)
I have since seen a Rueumotologist to r/o Lupus, which I have learned I have(this Dr's not sure which one yet, because again, my results are not coming back real clear cut..I was told I do have 5 outta the 11 signs pointing to SLE Lupus(but my ANA came back neg as did a couple other tests..but many tests came back bad)
This is really were I need some advice/input....
(sorry 4 the long windedness..that's even WITH leaving a boatload of info out..grr!) n ur welcome! haha!
The Rhuemotologist started me on a new med on 2/1 called CellCept 500mg. & too increase the med every 5 days with ending up being on 2 BID everyday, for a loooong time. The med makes me feel pretty yucky (and that's just taking 1..yep..1st wk on it:) So at this point, my Prednisone has decreased from 60 to 40mg on 2/4/11 (tapering down 10mg every 5days,then down 5mg,then 2.5mgevery other day). The CellCept med is supposed to replace the steriods, to help put the Kidney failure into remission and to also help with Lupus. But within the last 4 days, I woke up with the dreaded MoonFace :O Now my BP is reading high(with no real pattern, yet my Pulse is now ALWAYS high averaging around high 90's to my highest # at 126 (Wed2/9) I do take Lisinipril 5mg and HCTZ 25mg a day along with 10 other meds(Kidney disease caused the hypertension I was told) I also have recently gotten blurry vision in my right eye(lasting about 5-10mins only when my pulse is high) 3x now. What's going on here?! I was thinking I was on the home stretch by DECREASING the steriods and starting this new med!! Does anyone know if these symptoms are withdrawals from the Prednisone, or maybe it's the new med Cellcept (just started on the 1 2x day, & my Prednisone dropped down to 30mg on Wed2/9.) But now at times my heart feels like it's gonna pound outta my chest!! Soooo.. was thinking/hoping I was gonna bypass the whole Moonface and swelling bit.. by starting the decrease dealio of the steriods..sheeesh!! NOT going backwards by swelling up NOW!! When will this go down? Wonder if that's why my heart rate is high? My Dr. said it could just be steriod withdrawals, and that I have to wait it out to see which med MIGHT be causing my current symptoms!In the meantime, my face feels like it's gonna explode! Has anyone been Dx with this certain kidney disease(s) or both Lupus & MPGN TYPE1 together?! Guess I'm looking for some reassurance of some sort from a personal experience, since I have not heard of one person yet to be dx with MPGN TYPE 1. What's the prognosis of this Dx?!
~ ANY INFO IS GREATLY APPRECIATED!! ~ P.S sorry, guess I should have warned ya to grab a snack and do some stretches before reading this one..or.. maybe I should have paused 4 an intermission! LOL
Thanks in advance ;D
~ SNC ~