Many of you know, but for those that don’t, my son has a rare kidney disease, MPGN type 3. It’s been acceptably controlled with steroids and other drugs. He’s 26 but he’s autistic so his medical decisions are up to me.

His specialist had recently passed away and the new nephrologist met with us yesterday. My concerns of the long-term use of prednisone and another drug was addressed and she suggested a couple of plans.

First was another kidney biopsy. Ugh.

The second suggestion was rituximab infusions. My mother was given rituximab and it put her autoimmune issue into remission for over 8 years. What a blessing that would be if that worked for Marky. I didn’t think to ask if there was a chance that it wouldn’t help at all.

I know the biopsy will give us information but I don’t want to put Marky through that again. It was horrible. He soldiered through it but I know it hurt. There is also a bleeding risk with it. I plan to ask him if he’d be willing to go through that again before deciding.

I don’t know, I just want to make a good decision here. I’m leaning toward the rituximab.

Any advice or comforting words are welcome.

Thank you for the update on Marky. I have thought about him a lot recently and was wondering how he is doing.

All your posts over the years and pictures of that little boy growing into a man.

I have family with stage 4 CKD. Kidneys are stressful. If this could improve his quality of life, I'd think it would be hard to say no.

quote:

Originally posted by SW_Sig:
Thank you for the update on Marky. I have thought about him a lot recently and was wondering how he is doing.

All your posts over the years and pictures of that little boy growing into a man.

Thank you. Marky is actually doing really well. His creatinine and protein in urine aren’t good but they’re steady. They sometimes go down to near normal but it’s always short lived so far.

quote:

Originally posted by BB61:
I have family with stage 4 CKD. Kidneys are stressful. If this could improve his quality of life, I'd think it would be hard to say no.

I am really hoping this gives him a chance to have some days without pills and worrying about checking his blood pressure all the time.

Long term steroids is not a path you want to go down if there are other choices. I would ask if there are drugs that would make him more comfortable if he has the biopsy.

My thoughts as a middle aged male with stage 3 ckd. I hope I never take another prednisone pill as long as I live. The effects that shit had on me were awful and numerous. I’d do another kidney biopsy tomorrow if I thought it would help. Good luck to both of you. B

I’ve finally been able to get Marky’s infusions scheduled. March 18 and April 1.

We have to begin tapering his current medications so that he’s off of the cellcept by one week prior to the first treatment.

I’m both relieved and worried. We’re taking away both medications that have kept him alive all these years. I’ve expressed this concern to his nephrologist. I’m sure I’m worried for no reason.

I pray that this new treatment works.

Marky’s first infusion is tomorrow. I’m a bit nervous about it. Prayers and emails welcome.

Thinking about you and Mark.

Good thoughts and prayers!

Thinking of you and Marky and I will include you in my prayers tonight.

I hope and pray everything is well with you all tomorrow.

The infusion takes 6 hours. It will be from 8am-2pm Eastern.

You and your son are in our thoughts and prayers

Hoping things go well. You have done a great job of helping your son thru trying times.

Best wishes for you and your family!

Best wishes!!! In our family, we finally got the GFR up to 29 after two surgeries and multiple trips to the ER. We take it one day at a time. I look forward to reading your report tomorrow.

Hope everything is going okay, Mark!

So far all is well. No reactions or discomfort.

Good to hear, hope it works for him, getting off the steroids would be a good thing!

Hi Mark,

The best advice is to monitor your son's progress and make sure you get any medical testing required on a regular scheduled basis.

I take a different immune therapy for Plaque Psoriasis and Psoriatic Arthritis and must have blood tests every 3-4 months and a TB test once a year. I take Humira (Adalimumab) which is an anti-TNF monoclonal antibody that affects inflammatory immune pathways. My condition is through the T cell or cell-based side of the immune system, where my own cells are targeting me rather than just foreign pathogens.

Rituximab is an anti-CD20 or anti-mature B cell monoclonal antibody. This type of therapy controls the antibody producing cells which are probably the source of your son's condition. Communication with your son's physician and specialist is key keeping him healthy and happy.

Best of luck with his treatment!

Mike (Molecular Biologist / Immunologist)