What do you think? A real game changer? - Kidney Disease

Kidney Disease

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What do you think? A real game changer?

Sharam profile image
23 Replies

Hello, everyone!

I thought I'd share this.

I'm not sure if you've heard of this before.

Dr. Richard Gibney (nephrologist) talks about some "game-changing" medicines and new ways to preserve kidney function!

m.youtube.com/watch?v=xrTy0...

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Sharam profile image
Sharam
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23 Replies
orangecity41 profile image
orangecity41NKF Ambassador

Good the study is encouraging early tracking of eGFR.

Sharam profile image
Sharam in reply to orangecity41

True

Sarah_402 profile image
Sarah_402

Thanks Sharam, I'm going to listen to this, its long though:)

Sharam profile image
Sharam in reply to Sarah_402

Yes, it's too long. I watched only some part myself 😅

Sophiebun11 profile image
Sophiebun11 in reply to Sharam

How about the highlights. Are they existing meds or clinical trials?

Sharam profile image
Sharam in reply to Sophiebun11

Well, the doctors says brand new drugs! SGLT2 drugs. Seems like they've been around for a while now. But studies show they can preserve kidney function

Sophiebun11 profile image
Sophiebun11 in reply to Sharam

I doubt they'll help with autoimmune kidney disease. Thanks for the short version, I hate watching YouTubes with my migraines. Thanks again.

Sharam profile image
Sharam in reply to Sophiebun11

You're welcome. For the most part he talked about people with diabetes and high blood pressure and proteinuria. They haven't studied PKD and other kidney disease. But as he said they're going to make even better and more powerful drugs in the future...He also said something about using genes to treat the problem in five years' time...

I just hope these aren't false hopes hahahaha

Bet117 profile image
Bet117NKF Ambassador

Looks good, Sharam, Thanks!

Will take a listen.

Bet

Sharam profile image
Sharam in reply to Bet117

Yes, It does look good! No problem!

AnonymousDC profile image
AnonymousDC

Thanks for this video. I will give it a look. Not sure I'm qualified at this point as a newbie to critique and comment further though. Still...thanks for sharing.

Sharam profile image
Sharam in reply to AnonymousDC

Not at all. We keep sharing stuff like this. Maybe one will turn out to be a real cure some day! Fingers crossed!

Halebopp profile image
Halebopp

I watched the video. Very interesting & timely. My BP is ok, but I have proteinuria & have been resisting going on a BP medication. I guess it’s time to talk to my nephrologist about this new type of medication.

Sharam profile image
Sharam in reply to Halebopp

No problem. Yeah, it wouldn't hurt to ask your neph. Keep us posted please. He probably knows something about it!

Aloha49 profile image
Aloha49

Thank you. This is great news! However, I am stage 4 PKD and the drug is not yet tested for my PKD stage. I pray that testing with occur quickly so I may be eligible. The 30% GFR reduction is very scary however. Diet seems the only way I can stabilize my GFR for now. I continue to stay as positive as I can. Thanks.

Sharam profile image
Sharam in reply to Aloha49

No problem. That is too bad... I really hope things will work for PKD too... There's gotta be something for thag too.I also hope these drugs the doc talks about are real game changer. Not just promoting a product...

FThomp profile image
FThomp

This entire YouTube channel is a goldmine of helpful info. Thanks for sharing!

Sharam profile image
Sharam in reply to FThomp

Yes. This channel is of great help. The man says he's a kidney patients and a kidney coach... Well...

debsgm profile image
debsgm

Sorry to sound cynical but most of these promotional videos are trying to SELL you something.

Be careful. Research the science carefully!

CKD has many different causes and big pharmaceutical companies love selling the latest medication which often doesn’t work for all.👆🧐

They must get their huge development costs back.🧐👆

Blackknight1989 profile image
Blackknight1989 in reply to debsgm

I agree with this assessment generally. I have been stage 4 CKD for 26 years and I have seen many new miracle cures come and go. That being said, there are some very promising new meds on the horizon. One way to check out the new meds or any type of new recommendations for CKD is to search the NIH MedlinePlus or PubMed for the actual research studies about those meds or supplements.

Sophiebun11 profile image
Sophiebun11 in reply to Blackknight1989

Totally agree with you and debsgm. I trust PubMed over YouTube any day. I don't get excited about things that "may" be developed "soon". I'm still waiting after 40+ years for a Scleroderma "cure". That was another failed promise. I was 25 when I first heard it and had higher hopes back then. I'm far from a pessimist, but I'm very much a realist.

Congrats on staying Stage 4 for so long. You're clearly doing something right. Don't change anything now!!!

Best wishes.

Sharam profile image
Sharam in reply to debsgm

I totally understand. You're right and it can be just to sell people their products...But let's hope you're wrong about this one lol 😅

Blackknight1989 profile image
Blackknight1989 in reply to Sharam

Certainly didn’t mean to cast shade on your post nor do I completely discount new info about new drugs/supplements/treatments. I have been a CKD patient for a long time and have seen so many miracles and easy “cures” in 25 plus years. However, this is an exciting time as finally money and research are starting to pay off with new meds/treatments. I just follow Uncle Ronnie’s tried and true advice….trust, but verify!

There is the biggest push in money and research for those of us who suffer from CKD in history. As there should be as CKD and complications from CKD are quickly becoming the number one cause of early deaths in the world. Plus, we are a costly bunch to treat long term with the current treatment. Speaking of dialysis it is a 1960s/1970s technology and treatment still the only treatment for kidney failure except for transplantation. Can you imagine if we were still treating heart disease or cancer with technology and treatment based on 50 year old specifications and procedures?!? Folks would be outraged. Yet CKD kills more than most cancers but since it is slower and because it usually doesn’t get diagnosed until folks are in stage 3/4 and still those of us don’t need dialysis or transplant for another 5/10 years it was overlooked until the mid 2000s. Only in the last 10/15 years has the realization of the seriousness of CKD captured our advocacy groups and the national health groups. That has led us to where we are now with many potential great developments just around the corner medically speaking. I don’t expect those will be ready for me but hopefully for the generation behind me so if my kids have to suffer with CKD they have many more treatment options and most importantly get diagnosed quicker. That is still lacking despite all the attention to CKD. Even if GPs or other docs test for CKD they don’t tell patients until stage 3/4 still. That is malpractice in my opinion if not gross incompetence. Hopefully the push for better and more effective treatments can also result in docs testing and telling folks at stage 1/2.

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