What medicines are you all taking who are s... - Kidney Disease

Kidney Disease

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What medicines are you all taking who are stage 3?

Ladyprudence profile image
27 Replies

My insurance company has cut me off Kerendia, saying 'The use of this medication for any reason other than the treatment of chronic renal insufficiency DUE TO type ll diabetes does not establish medical necessity for this drug."

I go back to my doctor in 2 days for A1C and gout testing, and thought I would like to ask her about any other drug for my case. I'm trying hard to take proper care of myself, so I may not require any at this point; I want to have some alternative ideas, just in case.

Thanking you in advance for any responses.

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Ladyprudence profile image
Ladyprudence
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27 Replies
Blackknight1989 profile image
Blackknight1989

If your insurance is that specific then I’m afraid there is very little you can do as most of the new medications being used are not specifically indicated for CKD. In fact, there are no meds specifically indicated to treat CKD yet. I’m sure the handful of meds that can and are being used to treat CKD will eventually be indicated specifically to get around your insurance company’s issue but none are currently indicated in a way that your insurance company will approve it as a med specifically for CKD so you may want to understand what the specific indications are for the meds and you and your doc discuss the SPECIFIC indications so your doctor can prescribe it specifically as it needs to be in order to get around this insane issue of being specific to what the “exact” indications state. In a year, it won’t matter but these are either new meds or new indications for existing meds and as such MOST insurances will be dicks like this with either compliance to one of the EXACT indications or they will not allow the meds to be used.

Ladyprudence profile image
Ladyprudence in reply toBlackknight1989

Blackknight1989 , exactly; if I read the notice correctly, I need to have type ll diabetes with the CKF in order to get the Kerendia. So if I test positive with the AlC test, I'll probably be able to get the drug. (heck of a way to get a med!) This is Blue Cross we're talking about; they've really tightened their belts in the past couple of years. But I'm not defeated yet. I think the exercise, modification of diet and lots of water will go a long way to help me. Thanks for your response.

Bassetmommer profile image
BassetmommerNKF Ambassador

I know that your doctor can try to force the issue, but it is diabetic drug and so, unless your doctor can indicate you have DM2, you are out of luck. The Kerendia website says "associated" with diabetes, not caused, by the way. These new designer drugs are fabulous if you can get them. But the cost is prohibitive and the insurance companies are being very stringent about letting people get them.

If the world wanted to make thing right, get rid of prior authorization and let the doctors prescribe what they feel the patient needs.

Ladyprudence profile image
Ladyprudence in reply toBassetmommer

Thank you, Bassetmommer. I agree with you and BlackKnight1989. I was fortunate enough to get the drug for a couple of months, but had to fight tooth and nail to get that much. I noticed that if Caremark did send it to me, my co-pay would have been 125.00, which is a lot more than anything else I've ever had to pay. Appreciate your information that it IS a diabetic drug.

OldTownhammock profile image
OldTownhammock in reply toBassetmommer

Yes. Wouldn't it be amazing if our doctors were allowed to make medical decisions and not the insurance companies

MinnadeParis profile image
MinnadeParis in reply toOldTownhammock

agree. Insurance companies are in biz for profit. It would be nice if Doctors could make the decisions and nor the insurance companies nor the politicians

userotc profile image
userotc

My mum is hoping to keep drug-free 🤞🤞

Ladyprudence profile image
Ladyprudence in reply touserotc

You go, Mum!

ChevyHappy profile image
ChevyHappy

I was on Kerendia for several months but it spiked my potassium levels and my doctor took me off. I am now on Farxiga and my egfr has risen from 32 to 40.

Ladyprudence profile image
Ladyprudence

Bingo, ChevyHappy! The last time I saw my doc, I mentioned pain in my legs waking me up, and she said sometimes the potassium in meds causes that. She said, 'would you like to discontinue the Kerendia for awhile and see what happens?' That spooked me and I said Not right now.

I think this may be the route we'll have to take though, and Farxiga was on my list to ask her about.

The people in here are so savvy and helpful.

Ladyprudence, I'm on Farxiga.

When my neph suggested it, I was SHOCKED my insurance covered it. It's SO expensive, and I'm not diabetic, but it was covered and hot damn, it really does the trick for proteinuria, I'm down to zero! No side effects at all.

Other than that, no drugs, yet. But I'm not against taking a drug that improves my CKD, I have younger kids and I want to stick around as long as possible :-) I do everything else possible to take care of my kidney health with diet and exercise, so why not get the help of a med that is working miracles?

All the best to you! :-)

Ladyprudence profile image
Ladyprudence in reply to

CKDgurl, why not indeed? That's why I have it on my list to ask the doc about. So far, I haven't any protein in my urine, but we know that can change on a dime. I'm making note of all these medications mentioned in case I do need extra help. I'm glad the Farxiga is working so well for you.

jodaer profile image
jodaer

I'm on Jardiance and just started Trulicity. I tried farxiga but could not tolerate it but that was OK because my insurance wouldn't cover it. I was surprised they c overed the Jardiance and Trulicity. I've just started both of them so don't know how it's helping or not. I go for labs next week so will see then. It will be 7 weeks on the jardiance. I will say it did nothing for my blood glucose.

Ladyprudence profile image
Ladyprudence in reply tojodaer

I'll be interested to see how they work for you, jodaer. Thanks

jodaer profile image
jodaer in reply toLadyprudence

I'll let you know.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply tojodaer

Hey Jodoer, Can you let us know how things turn out Curious because I am hearing more people going on Jardiance. And my sister in law is on Trulicity. She says it works for her to keep her sugar in the right range. I like to hear patients stories on these new drugs.

jodaer profile image
jodaer in reply toBassetmommer

I will, I go for lab tests next week. I think the Trulicity is doing what it it supposed to be doing but the side effects I'm going through make it maybe not worth it. I'm not giving up though. Not yet

Bassetmommer profile image
BassetmommerNKF Ambassador in reply tojodaer

What side effects are you having? Are your sure it is not the Jardiance?

jodaer profile image
jodaer in reply toBassetmommer

Not completely but I was on Jardiance for 4 weeks prior to starting Trulicity. The side effects are some gut issues. I also have IBS so not sure I should be taking either one. They both say if you have bowel disease do not take. I'm not sure if IBS would classify as a disease. The other is I can't seem to concentrate as usual and feel like I'm on edge. I have to take the 2nd injection Sunday and will do so but that might be it if things don't level off. Also gained a couple of pounds.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply tojodaer

Ah... the gut issue is common. I am on another GLP-1 called Ozempic. I too had to adjust but I started out with the lowest dose possible. I did get up to a larger dose but had pancreatitis, so she dropped me back down to the low dose. It did get better over time. Gut issues are notorious with both drugs. See if you can find a Facebook group for Trulicity. That helped me when I joint the one for Ozempic. I will say that although I did not lose weight like they say I would, my A1c has now been 5.8 for over a year now because of it. And, I have cut down on my insulin, so it is worth it. I

jodaer profile image
jodaer in reply toBassetmommer

I'm not sure I will be able to adjust to the gut issues. I already had them so will see. Also, I've been on T for 6 days and have gained 4 lbs. I did lose about 5 or so only on Jardiance.

Definitely ask about it. My neph called it the new miracle drug for kidneys, personally I don't care if big pharma is making big bucks off it; if It's helping me to live longer hats off to them ;-) I am always looking for good natural things I can do for myself, but I think it's important to know when to let the professionals' takeover. Take care :-)

Helloyall profile image
Helloyall

Doctor has to rov3d medical necessity of off label use. And make a good case for ot. Then after the prior authorization gets shut down ,doctor jasxto go to the next stagecwjich osxg3nerally a physical to physcian appeal. Many don't like doing this but screw them; that is their job. If you are being treated for gout there are other medications and dietary plans to follow. Consult nephologist and rheumatologist

OldTownhammock profile image
OldTownhammock

I am stage 3b and my doctor says I have to follow the kidney diet, no meds. scary, I have only 1 kidney

Ladyprudence profile image
Ladyprudence

Since I could not have Kerendia, I asked the doctor about Farxiga, and she said she'd rather not since some of her other patients had bad reactions to it. But I've been jotting down the names of drugs you all mentioned in this thread to ask about later. She mentioned possibly giving me Allopurinol for high uric acid, but said she couldn't see a uric acid flare right now. Sometimes I think the doctors speak vaguely, and it makes me feel unsteady all over again. Would rather hear the truth. Appreciate everybody's responses to my question.

Blackknight1989 profile image
Blackknight1989

When I read a statement like your doctor said she’d “rather not since some of her other patients have had reactions.” I guess primarily is it not your decision as the patient to decide what your willing to try abs since these therapies are her decision to allow you to do that as long as she asses you as medically eligible. I’m taken aback as I’d think that is your decision and as long as you are medically qualified health wise she should support at least a trial…maybe that’s a misread of the situation but that what I gathered from reading your comments. To me, this is a disservice and the entire reason I just fired my current nephrologist as if medically qualified to take Jardiance (or Faxia or the generic forms of the same) their initial testing was very deep and well-funded. It seems from the test results I’ve read and I believe I’ve read all on both meds they have significant benefit with limited downside. So why the hesitancy to prescribe?

Ladyprudence profile image
Ladyprudence in reply toBlackknight1989

I don't know the answer to that one, Blackknight1989. Maybe she sees something in my history that should be addressed differently. I'm still trying to figure out why in my research Omeprazole and Prilosec are not good for high b/p patients, (sodium) yet my doctor's office argue that they're fine to take, either one. High b/p is my enemy. (Where's my actual doctor these days?! She used to like me till I became a problem child; lol)

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