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* MPGN TYPE 1* or known as * MEMBRANOPROLIFERATIVE GLOMERULONEPHRITIS, TYPE 1 *

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Posted 2/10/2011 8:36 AM (GMT 0)
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 ~
Posted 2/13/2011 4:35 PM (GMT 0)
Hey there! Sorry it has taken so long to reply! I do have lupus nephritis with many of the same symptoms you have described! What you do describe is what happened when I decreased my pred to 40 mg. I was on 60mg of pred of a full year until my kidneys started getting a bit better. I was put on Cellcept at 2000mg daily. It didnt set well with me at all but I sure hope you have good results. This in a way has become the new gold standard for lupus kidney problems. But the good news, if this doesnt work as well as your doctors like, there are several other choices. But Cellcept is also supposed to help w/ many others issues caused from lupus.

Do you have any specific questions about lupus or the kidney questions I might be able to help you w/?!

Oh, BTW, my heart rate now stays at 90-120. I think its probably the prednisone but my doctoros do not seemed to worried!!!
Posted 2/18/2011 9:46 PM (GMT 0)
Hi Amy
Actually my #1 question was regarding the MPGN TYPE1. It seems that no one really has any info on the disease, and I still haven't heard of anyone else being dx with the disease ;( I was dx with Lupus and Sjogrens secondary to my kidney disease :/ As for the Cellcept, I too take 2000mg, it's a tough med to take that's 4 sure! The 60mg of Prednisone didn't work for me. Have you ever heard of this type of kidney disease, if so what's the prognosis of it?!
thanks 4 ur helpful info :)
Shelley
Posted 2/21/2011 12:31 PM (GMT 0)
Hi Shelley, I have MPGN Type 1. I only found your post through googling to see if I could find others with the same disease. I would love to be in touch. I probably won't continue using this forum, I am part of http://www.kidneypatientguide.org.uk/newBB/index.php which is a fantastic forum for kidney disease sufferers. So I won't be sticking around here. But I would really like to hear from you. I also have just set up a facebook page: http://www.facebook.com/home.php#!/pages/MCGN-MPGN-Type-1/168835409830710. If this link doesn't work just look up "MCGN / MPGN Type 1".

You can email me at [email protected]

I have had MPGN Type 1 for 11 years. Kidneys still functioning. Been on MMF and Azathioprine. Also high dose prednisolone four times. It did actually work for me. It didn't bring my protein leak right down, but enough for my docs to think it worthwhile. But its HORRIBLE! They want me back on steroids now for the 5th time but I just can't face it. I don't have Lupus, as far as I'm aware. I presume they've tested thoroughly. It was so long ago that they tested for it I'm thinking maybe I should get them to test again.

Anyway, do get in touch.

Ali

Post Edited By Moderator (aimsgirl16) : 2/22/2011 4:59:57 AM (GMT-7)

Posted 3/28/2011 8:49 PM (GMT 0)
Hi Shelly,

Please check out nephcure.org I think you will find others there with the disease that is similar to yours.

I am sorry you have to go through all of this.

Take care,
Beth
Posted 7/13/2011 5:45 PM (GMT 0)
Hello,
I also have mpgn type 1. I was diagnosed 3 years ago. I am 44 years old am was very active and healthy. I did not smoke ,drink or did drugs. The way it started with me was with my feet swelling up. I just had surgery for my achilles tendon and thought it was from that, but noticed both my legs and feet where swollen. We went to the doc and he told me I had to go see nephrologist . I was sent to get an biopsy and the sample was sent to the UM and the Univ of Min both confirmed that it was mpg type 1. I was shocked and upset. My doc started me on a high dose of predisone along with lasix and my bp meds where changed. Some of the problems I'm having with this disease is clotting. I was complaining of chest pain and went to the er. Both time the checked my with xrays and ekg and found nothing. The third to the er they did the same test(blood work,ekg,x-ray) still they found nothing and was getting ready to discharge me. My wife is a register nurse and told the doctor in the er that she wanted them to run more test because of my kidney disease so they did. I had a ultra sound and they found three clots on my hepatic portal vein. At this point my kidney function was at nearly zero( creatine 5.8) and my liver was also giving my problems. I was given lovenox and cumadin to thin my blood. I was then given the bad news of putting temporary ports for dialysis. It was first put into my neck and then taken out and put in to my chest. During the dialysis my creatine came down(3.1) and was told to hold on dialysis because they wanted to see if the kidney started to work again. I went 2 weeks with dialysis as my cratine went down to 2.2. They have now taken off the port and for now dialysis free. I was told that I needed to be on blood thinner for the rest of my life because of this disease. These are the meds im taking now. Coumadin 4mg daily ,Micro k10 2 tabs daily, clonidine 0.2 tid, hydralazine 25mg bid,norvasc 5mg bid,demadex 100 mg daily,xanax prn, zocor 10mg daily, cacitroil 0.25 daily,nephrocaps 1 daily, predisone 2.5mg daily,.
Posted 10/5/2011 6:34 PM (GMT 0)
hi my 18 year old son was diagnosed with mpgn type 1 a few months ago. He has protein in his urine but has 100% kidney functioning. Has anyone taken cellcept? My son is overweight and I really do not want him to take prednisone. His doctor is debating which drug to try next . He is presently on blood pressure meds and his protein is 3 grams and it is not going down. Any advise would be helpful. thanks, Julie
Posted 10/5/2011 8:11 PM (GMT 0)
Blood pressure meds...is it lisinopril? If not, maybe you could talk to doc about that? It seems to help control protein leakage from urine. I took cellcept for about 8 months and I personally could not tolerate it, but the 8 months I was on it, really helped with the kidneys. I know many people have a amazing response to cellcept! What other drug is the doctor considering?
Posted 10/5/2011 10:03 PM (GMT 0)
 Thanks for writing back Amy.  Yes, my son Teddy is on lisinopril, 20  and has been for 2 months.  It has not lowered his protein so far.  His doctor  is thinking about cellcept and prednisone.  Both scare me.  I am wondering if only 2 months on lisinopril is long enough to make a change.  What was cellcept like ?  If I have to choose between prednisone and cellcept, what would you recommend?  My boy is a muscular kid who 208 pounds and is 5 foot 5.   I am so afraid of the weight gain with prednisone!!   Julie

Post Edited ([email protected]) : 10/5/2011 4:11:54 PM (GMT-6)

Posted 10/10/2011 2:10 PM (GMT 0)
Hmm...are you sure the doctor doesnt want to do prednisone and cellcept. Generally we have to be on prednisone to help since it works so quickly until the cellcept has plenty of time to work. And I do not want to go into detail w/ you on how cellcept treated me as I was an odd ball and it was not a good thing. I don't want you to worry about what might happen. In my experience, the best thing to do is go on what the doctor is saying. They are trained to deal with these situations.

Prednisone is good short term...but very dangerous in long term effects, which is why am thinking the dr wants to use both and eventually cut back on the pred...

When do you guys go back to the doc?

Posted 10/11/2011 3:53 PM (GMT 0)
 The doctor is on the fence about how to treat my son because he is in the early stages of the disease. I will ask him about the combo of cellcept and prednisone.  He is supposed to get back to me soon.  I am so confused as to what to do but I do agree he is the expert, all cases are individual.  Thanks for writing.  Julie
Posted 10/12/2011 8:46 PM (GMT 0)
I was on lisinopril 20mg 1xday and Diovan 160mg 2x day and that really helped me. I wish my Doc's had done that prior to putting me on prednisone (which never really helped me, but seems to help many others).

I was on Cellcept for two years and I had no side effects I can remember except sometimes I would feel a bit nauseas.

Somtimes prednisone can put people into remission quickly but it is not good to be on it so long at a young age.

I gained about 20 pounds of prednisone weight, I was on it for 4 years for both my kidneys and ulcerative colitis. I was on 60/40mg alt days for the first few months and then tapered down, I was then on varying doses of 10mg to 60 to 100 (for a month for my colitis). Pred is not fun, there is a book called coping with prednisone, it helps you feel like you are not crazy and I felt like I was starving all the time and was always thinking about food. I am overweight as well, and as much as I hated putting on 20 pounds, it could have been worse. Definintely watch the salt intake while on it.

Much of the time it is finding the right cocktail of meds to get into remission. What are his proteins now?

I was also on Tekturna for about a year and I thought that helped me some.

I did great while on lisinopril, diovan and remicade (the remicade is for my colitis, but humira kind of similar is being used in drug trials for kidney disease).

I am off lisinopril and diovan now, my Doc is testing to see how I do w/out the meds b/c I want to get pregnant. My protiens are +1 in the am and +3 in the PM.

I wish you all the best.
Posted 10/17/2011 7:46 PM (GMT 0)
Hi Beth,
My son just got put on 60 mil every other day of prednisone and he will be on it for a month to see if it brings down his protein. He is presently at 3 grams. His doc did not want to try cellcept because he said that it is a longer process and he is hopeful that a quick dose of pred will work. He is also on tricor and zocar to lower his triglicerides and lisinopril. I have not heard of the other drugs you mentioned but I will ask his doctor. We so are worried about the weight gain with pred and my boy is a freshman at a community college and we are so fearful that this may ruin his first year out of high school. We found out last Nov, that he had a possible kidney disease by a routine urine test for a sports physical. We would not have known because he did not have any symptoms. Jusr knowing that I can communicate with someone is going through with this helps! I wish you the besf of luck also. Julie
Posted 11/13/2011 5:39 AM (GMT 0)
Hi Julie and Beth
My name is Shelley, and I posted the initial comment of MPGN. I would really like you both to join our group on Facebook. If you google MPGN, it should bring you right to it. It is a closed group, which means all comments are private, only for the group to see.. so that's nice. Thee is 40 of us total, both kids and adults. It's a very supportive and reassuring group. Plus it's nice to vent to other who totally understand what your going through. If you have a any questions, you might be able to find me on Facebook, and I will direct you in the right direction!
Hope to see you both on there!

As I don't come on here often, I would love to hear your stories... ;)

best of health... and many hugs :0)

~Shelley~
Posted 12/31/2011 7:19 AM (GMT 0)
My son was dx with MPGN type 1 at age 14. He had bloody urine. He has been treated very successfully!!! It can be managed. I was so afraid of kidney failure down the road. We did IV steroids at first then oral. He has been on Cellcept for many years. Takes Prednisone 20 mg every other day and 2000mg Cellcept daily. The pedi nephrologist always explained things to me and I ask questions. It's not very common and is difficult to find a physician who knows how to treat it. He added Vasotec (Enalapril) gradually to increase the perfusion to the kidneys and to combat the high blood pressure that would eventually come from the steroids. Also Vit E and aspirin daily. My son fortunately has tolerated the meds well (except for weight gain) and is now 22 years old with good kidney function. I came to this site looking for others with long term management and looks like we 've been blessed. The Cellcept and Prednisone combination has worked for us for 8 years now. Just starting to wean down the meds. Hope this helps someone. Our nephrologist says the Prednisone has more long term side effects than the Cellcept. Transplant patients take Cellcept for the rest of their lives and doctor says it is ok long term. We will try to wean off the steroids first.
Posted 12/31/2011 5:19 PM (GMT 0)
Nursemom....
My 6 year old daughter was just Dx with MPGN 1, this week, BUT HER Dr. is a little unsure about the disease, I am just lost as to how I find a Dr. that knows about this rare disease. Where is your sons Dr located (state)? I am really lost with all of it just this month she was diagnosed with Epilepsy as well, so I am learning about both at the same time and have been thrown for a super large loop. Any suggestions?
Posted 3/15/2012 7:03 PM (GMT 0)
cpstarsy,
You need to find a Pediatric Nephrologist who has dealt with this before or is willing to take the time and research to find out todays best practices. Ours is in South Dakota. Our son is 7 and was diagnosed with MPGN Type 1 a year ago. He has been on 40mg of Prednisone every other day, 5mg of Lisinopril and Rinididine (to protect his stomach from the Prednisone) daily. He had been doing very well and in remission as of September, but the past couple of weeks protein has been leaking past his kidneys again so we'll see. Best wishes and our prayers.
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