My nephrologist wants me to take Jardiance for CKD?

@tntwo99

Your message resonates with me. I am so sorry that you are experiencing what I call "treatment exhaustion." I am also experiencing regret that I ever started treatment for CKD. I was briefly at Stage 3a but have been Stage 2 for three years now. Fortunately, I am not diabetic. But that makes it even more stressful to make a decision about starting Jardiance (my insurance only covers Jardiance which is supposed to be interchangeable for what my hematologist/nephrologist wants to fix--high urine protein).

As I wrote earlier, when I asked about side effects to watch for, he said more peeing and fatal skin infections. And I'm supposed to be happy that urine protein is down while spending my life in the bathroom and waiting for that fatal skin infection?

About the deductible. Your maximum out of pocket costs for drugs should be $2000/year. I reach that this month but my husband spent more than $2000 on prescriptions in January so the rest of the year was "free."

If I remember correctly, my MIL was on Warfarin but was able to get switched to another med that didn't require INR as frequently (or perhaps ever again).

Please talk to your doctor about alternatives. I am thinking that mental health should be a priority for our care, too.

Thank you.

@mnsansei Wow. The skin infection side-effect has me wondering. I have skin cancer from terrible sunburns as a kid. And where I tend to scratch them they become very red and inflamed. This has occurred since I started taking Farxiga. They shouldn't become fatal as I am on lifelong amoxicillin for an infection in my prosthetic knee which turned into septic shock. Because it was so serious my inf. dis. doc felt I should stay on 3000 mg daily so that it doesn't happen again and I lose my leg or worse.
I have been on other blood thinners but the warfarin works for me and is cheaper. I had been on Eliquis but after the first free Rx, it was much too expensive.
I just checked my deductible and it is $220.

@tntwo99

And I thought I'd been through the wringer. I'm one of those people that is prone to having rare medical problems. It started in HS--how many people do you know who got infectious mononucleosis from a clarinet? I am one of about 10 people with the kidney disorder ITG. The most recent "surprise" was a diagnosis presumed gout. It's always something.

Just to clarify. Most of my meds cost less than $10 for 90 days. You mentioned Tier 3. I have one of those and it is pricey. But in 2023 or 2024, Medicare changed and the most I have to pay now for all of my meds is $2000 per year. Still a big sum but way down from the past (perhaps $5k to $8K?). Please check with your insurance company. Perhaps Eliquis and Farxiga are now affordable?

There is a generic apixiban (Eliquis), you just have to order it from Canada (my wife takes it).

@steveutnv Yes, I've been ordering via the Canadian Pharmacy. It works great. 200 tabs was about $52.

@mnsansei My out-of-pocket limit is $3850 with $250 deductible (new) Part D deductible on some drugs. Eliquis is still expensive. Farxiga is $42 monthly. I am on Entresto for CHF but through the Patient Assistance Program. That stops this year as there is now a generic. What also drives me nuts is all the side effects from all of these meds. I am on 11 meds plus insulin and lidocaine, and diclofenac. I honestly wonder sometimes if it is all worth it.

My doctor put me on both Jardiance and Ozempic for my kidneys and heart. My A1c has improved, my chronic kidney disease stage 4b has remained the same for the last year and I have lost some of my excess weight which has relieved some of the arthritic pain in my back, knees and hips. I feel it has been a win win situation, I was always maxing out my deductible and now that Medicare maxes out at $2,000, I am happy.

@tntwo99 Wow! I thought the out of pocket limit was limited by federal law beginning this year. Perhaps it's only limited for Medicare Advantage plans like we have.

Big decisions like the one you are contemplating are the worst part of medical treatment.

I don't have quite as many meds as you do but wonder if they have side effects that I have been thinking are just old age. The priciest is Repatha (finally something that reduces my blood lipids) at $60/month--and that's just two doses. The other expensive one is colchicine (for gout) but is only taken when I have a flare. The downside of gout, aside from having to take another med to lower uric acid, is that I've had to almost become a vegetarian so I don't get flares. Flares are not only painful but could do serious damage to my already weakened kidneys. The upside (?) of gout meds is that I lost 40 pounds.

I stopped getting a med, velcade, in March 2023 for the main kidney problem. It took almost two years for my doctor to say he thinks I might be in remission. Getting velcade was an off label use for CKD. I'll know more today, I think, about whether I am still in remission. That treatment has had the worst side effect. It was purposefully given to me to make my immune system ineffective. I apparently didn't ask enough questions before agreeing to the treatment. I am still suffering from not having an effective immune system so I catch what seems like every darn virus. It takes way to long to get over these. I tested positive for 22 days when I had covid even though I was eligible for and took an immune system boosting med that was only offered to patients like me who had had velcade and its relatives. Plus Paxlovid to help reduce the length of the illness. My doctor recommended a trip to the ER which I decided was not a good idea when the ER was overflowing with covid and RSV patients. A recent cold lasted five weeks and may have triggered a relapse of infectious mononucleosis. So far the only successful strategy to avoid getting sick is to stay home. I'll have to decide whether it is worth it to be treated again if the kidney problem is re-awakening.

You are in a hard place. Don't hesitate to vent some more if it helps.

@mnsansei That must be so difficult knowing that you can get sick from a simple outing.
Thankfully I don't "catch" colds and such easily. It's the other stuff that gets me.
I had a gout attack while sleeping 2 months ago. Never had it before and I couldn't figure out what was going on. My toes and my thumbs hurt so bad and I couldn't move them. My toes was red and swollen and it finally hit me that it must be gout. It has left my left hand so weak that I can't even hold a fork. I had labs done 2 weeks later and they checked my Uric Acid and it was very high. I told my PCP nurse practitioner and she said that I must have irritated a nerve in my hand. That was it. My nephrologist wants another test and I have an appt. to go over everything.
Before I start any meds, I check them for all of the side effects. I started doing this after being put on Effexor in 1995. .When I would forget to refill and thus run out of it, I would have a terrible withdrawal after just 2 days. Upon research I found just how bad it can be to stop it. Almost all of my meds are bad for anyone with CKD which I do not understand. Fix one thing but break something else.
I am on Blue Cross Advantage but everything keeps going up. ER visits used to be $90 and now they are $150+. And with CHF they tell you to go to the ER if you gain more than 2 lbs a week. Yeah sure.
It is crazy that we have to be such advocates for ourselves when these doctors are supposed to know what we can and can't take.