Anyone with MPGN type 1 (kidney disease)? - Kidney Disorders Message Board

tyneantuff · 01-19-2009, 01:14 PM

Hello Everyone,
I have MPGN type 1 and have had it since 2000. I have been on Prednisone on and off during this time and have been in numerous remissions. The last one only lasted about 5 months and my Nephrologist seems to think I am no longer responding to the prednisone and wants to possibly try me on Cellcept. I would be interested in hearing from anyone with this disease and what treatments you may know of. Also, would like to hear from anyone who has taken Cellcept and what you may know about it. Thanks in advance. Look forward to hearing from others about your experience with MPGN.

Delvis · 01-07-2010, 09:32 PM

Hello,
I also have MPGN type 1 I've been diagnosed for 11 months now. The put me on Prednisone 40ml and diffrent types of bp meds. This disease is sort of tricky I'm trying really hard to stay positive,but what kills me is the lack of energy that I don't have anymore. I have a hard time walking and carrying my photo equipment. I'm only 43 years old and feel worn out .My Nephrologist tells me that there is some new treatment called plasma dialysis I'm not sure how it works ,but I will get into more details when I meet with him next week. I have never been in remission and I cant never seem to get the swelling on my legs to go down even with the lasix that I take. I have not heard of cellcept, but now that you mentioned it i will ask my doctor about it

Good luck stay strong.
Del

Cora1003 · 01-08-2010, 06:01 AM

While I don't know about this kidney disease, I am on cellcept for my transplant. Actually the drug I am on is called Myfortic and it is very similar to cellcept but easier on the stomach. Basically, cellcept is another immunosuppressant like prednisone, but in the overall still has fewer dangerous side effects. You will still be immunosuppressed, so have to watch for infection (hand sanitizer is your friend). The biggest problem with cellcept is the gastro side effects. The worst of which is diarrhea. It does go away after a while though.

Delvis, have you cut the salt and processed foods (pre-prepared) out of your diet? This may help with the swelling. It did for me. Cutting back on animal protein is also easier on your kidneys, so that may be of some assistance as well.

Best of luck to you both.

jmew · 06-14-2010, 07:57 AM

I have mpgn as well and was diagnosed in 2007.

tyneantuff · 06-21-2010, 01:04 PM

Quote:

Originally Posted by Delvis

Hello,
I also have MPGN type 1 I've been diagnosed for 11 months now. The put me on Prednisone 40ml and diffrent types of bp meds. This disease is sort of tricky I'm trying really hard to stay positive,but what kills me is the lack of energy that I don't have anymore. I have a hard time walking and carrying my photo equipment. I'm only 43 years old and feel worn out .My Nephrologist tells me that there is some new treatment called plasma dialysis I'm not sure how it works ,but I will get into more details when I meet with him next week. I have never been in remission and I cant never seem to get the swelling on my legs to go down even with the lasix that I take. I have not heard of cellcept, but now that you mentioned it i will ask my doctor about it

Good luck stay strong.
Del

Dear Del,
How are you? I am happy to report that I am in a FULL remission...and feeling very good. I have been on the Cellcept for over a year now. I have remained on prednison for 7 years straight, but am happy to report that I am down to 2 1/2 mg. every other day now. I return to my doc in July and if things are still good, I hope to get off of them completely! I know what you mean about the fatigue. When the disease is active, I am extremely tired and everything seems to be an effort. I too, took Lasix for some time, but have not had to take it for some time now. I seem to manage the swelling if I monitor my salt intake. I am now 46 years old, and at times I feel that this disease has aged me beyond my years! I am still taking the cellcept, along with cholestrol med, protonix for my stomach, and blood pressure med. My blood pressure was so good at my last visit, I was actually able to get off of one of them. Please let me know what your doc said about the cellcept. I wish you all the best. Sincerely, Beverly