← Return to My nephrologist wants me to take Jardiance for CKD?

Discussion
Comment receiving replies
Profile picture for mnsansei @mnsansei

@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.

Jump to this post


Replies to "@tntwo99 Wow! I thought the out of pocket limit was limited by federal law beginning this..."

@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.