Everolimus and proteinuria

Hi @caretakermom 😊
I just saw your post about hubby and proteinuria. I know he recently started Everolimus. What is the doc saying about the proteinuria? Is there urgency to change the med or does the doc think it may be transient? Is the proteinuria causing any decrease in GFR or other kidney function tests? Creatinine or BUN stable? I am so sorry he is going through this. I was hopeful that this med change was going to be the solution to the recurring CMV infections. I am very disappointed so I know how you must be feeling too. Please let me how you are both doing.

Hi @hello1234,

Hubby's most recent urinalysis shows protein is present. I immediately contacted nurse and she forwarded labs to the PA that day. Unfortunately, the PA didn't look at the urinalysis carefully and overlooked it. I told nurse to please forward to an MD and today I heard back. Took an extra day else I would have had hubby go in to get labs done today!! They ordered a protein creatinine ration lab that will measure how much protein is present in urine. Hubby's going in to get his weekly labs drawn tomorrow, along with the new order. Proteinura is the one of side effects that I dreaded and with good reasons. One other thing to check too is lipids but that's not for another 3 weeks. Another side effect is hyperlipidemia and the nurse was telling me she has seen triglyceride going thru the roof!! As of now, the only side effect hubby has is the proteinuria, we think it's the result of Everolimus. No mouth sores or pneumonitis. Not sure what they can do to stop it or minimize protein leakage. The plus side is CMV is undetected so it seems to work against CMV. You get rid of one issue then another one arises!!!

I'm hoping they can perhaps switch him back to Myfortic at a lower dose than pre-CMV, 540mg bid was too suppressive. Maybe they can do 360 mg bid but the nurse keeps saying that's not enough, but perhaps it will be enough FOR HUBBY. Everyone metabolizes medication differently so I'm not sure that they can generalize and say everyone needs to be on at least 540mg+ Myfortic!! The nurse says standard dose for Myfortic is 720mg bid.
our local neph was telling us that he has many patients that are on just 360mg Myfortic.

Hubby's creatinine is holding stable as are his other labs. His BUN tends to run higher but that's normal for him. Everything else looks good except for the protein present in urine. Lipids labs in another 3 weeks.

My hubby actually looks and feels a lot better since getting transplanted, probably because he is now off Valcyte which made him very lethargic! A big disappointment is the proteinuria and from talking to the nurse, she has no idea how this situation will be resolved. Sounds like there is easy answer!!

I'm very worried about hubby's kidney. I don't want any more damage done and at this point want him be off Everolimus. I'm not sure what other alternatives the team has for hubby. The nurse was saying Sirolimus but that is the same drug family as Everolimus which is still relatively new(but supposed to be better than Sirolimus)!!
Hubby has a video appointment with Mayo in 2 weeks but may have to see them sooner.

Never had protein in urine until after taking new drug so pretty sure new drug is the culprit!! I also spoke to someone in the facebook group and he is in same situation. His team took take him off Myfortic because it was overly suppressive. Put him on Tac and Everolimus and he says his creatinine has been climbing and it's currently at 2!! They are having him do an allosure test.

Hi @caretakermom
I know exactly how you feel regarding the process of getting the medications and dosages adjusted just right.... Stressful!
I am happy you have an appointment in 2 weeks to discuss the results and plan moving forward with the doctor.
Your local nephrologist is correct that many patients are on 360mg bid Myfortic along with Tac so it's an option on the table if your transplant doc agrees that it's a good solution to avoid the recurring CMV infection and the adverse reaction of Everolimus (proteinuria). You are also correct that Sirolimus lists proteinuria as a possible side effect too.
I assume you went this morning for the new lab work and protein test. Hopefully, the results will come back soon.
I feel good about the fact the doctor did not think it was urgent to stop Everolimus ASAP, but instead wanted to test the protein level. It sounds like he didn't feel there was immediate danger to the kidney in proceeding with the Everolimus for a couple more weeks.
Please keep me posted on how things are going and the results of hubby's tests. I am hopeful that one more tweak of the meds will achieve a good level of protection without recurring infection or side effects. This certainly is an ongoing journey and your hubby is very blessed to have such a wonderful wife and advocate! I am happy he is feeling better now that the Valcyte has stopped.
I am also looking forward to hearing if anyone on Connect has any experience with Everolimus or Sirolimus and proteinuria. Hopefully, they will jump into this discussion too!

Hi @coastalgirl 😊
Happy New Year to you! I think I read in one of your past discussions that you experienced a recurring CMV infection after your kidney transplant. I also had CMV after my kidney transplant and @caretakermom hubby has experienced recurring CMV. Did your doctor change your immune suppression meds or dosage of your meds or how did you eventually get rid of the recurring CMV?
Many thanks for sharing any details that you remember from during that time! I am currently dealing with the BK virus so I like to hear the success stories from transplant patients get the infections under control. 😊 I am approaching my three year post kidney transplant anniversary!

Hi @hello1234, I'm glad to hear that your BK is improving. I hope that with a bit more time your BK situation will resolve itself!!
We had a tele-health appointment with one of the Mayo Clinic Az PAs. He is someone who we saw during hubby's transplant period at Mayo earlier last year. Since we last corresponded hubby has had a couple more labs done, both of which show negative protein in urine. Brought it up to the PA today he says he is not concerned because the past 2 labs show negative protein in urine. Mayo did ordered the protein creatinine lab when protein was first detected and the lab result showed that it was just a trace amount, so miniscule that the lab was not able to measure the amount of protein for the protein creatinine lab. The nurse says the providers are not concerned if it's only a trace, and with subsequent labs showing negative protein in urine.
The providers are still monitoring his CMV and thus far it hasn't returned. The change of meds seems to be doing its job, however, the providers are continuing to monitor his CMV because it may possibly return. He says to do two more weekly labs and then if CMV is still undetected to do monthly labs. Then they will monitor him for another few months and then they will stop, if everything goes well. So all in all, changing the meds seems to be. helping thus far.

Not sure if the rest of my post should be here but here goes.
We are returning to Mayo Az at end of of Feb and beginning March for hubby's 1 year follow up. They will repeat all the tests they did on his 4 month checkup. At the 4 month checkup, the 24 hour Blood Pressure Monitoring Test was coded incorrectly and as a result we got an out-of-network bill that I had to resolve(Billing didn't do anything I had to talk to the documentation group).
As far as our insurance goes, Mayo is still submitting claims as out of network. As a reminder, hubby has Medicare (due to ESRD) as primary and EMPLOYER Anthem BCBS(not supplemental) as secondary. As long as Medicare covers a service our insurance will pick up the rest regardless if in/out of network. The problem/issue occurs when Medicare does NOT cover a service and Mayo submits the claim as out-of-network is what we have an issue with. Because our employer insurance has in-network access, therefore anything Medicare doesn't cover Mayo billing should file an in-network claim to Anthem BCBS. Apparently that is not what is happening and I've already asked Anthem BCBS to look into it but haven't heard back from them. Am worried because we'll be visiting Mayo for 1 year checkup services and I'm anticipating a lot of billing issues because Mayo billing hasn't changed the way they file our claims. The biggest issue with the Mayo Billing dept is I have no idea who is in charge, it's a big black hole that no one - not even the Mayo nurses and social workers, know who is in charge!! I have called billing numerous times and written to them explaining our insurance situation but apparently no one there is taking action to fix the issue. Their response to me is always: if Medicare doesn't cover a service then your supplemental won't either. And I keep having to explain to them that hubby's SECONDARY Anthem BCBS(not supplemental) is employer insurance and has in-network access to Mayo Clinic AZ( documented as one of insurance carriers they have in-network contract with!!) Therefore, Anthem BCBS will cover the services according to employer's health plan; it doesn't depend on whether Medicare covers it or not. Incidentally, my hubby will be ineligible for Medicare in April 1, 2025 which would be 3 years post transplant. Sorry for ranting. I get all riled up every time I talk about the Mayo billing department and how incompetent they are. We pay for both the Medicare and employer insurance premiums, plus our employer insurance has in-network access to Mayo Az, but the Mayo billing dept is filing out of network claims denying our in-network benefits, billing us at out-of-network rate on services not covered by Medicare !!
If anyone has any ideas of what else I can do to get Mayo Clinic billing to fix this, please chime in!!!

Hi @caretakermom 😊
I am sooo happy to hear that everything is going well with hubby so far! No sign of CMV, negative protein in the urine, etc.... Yay!!
Regarding your insurance billing problem. When I spoke with Medicare Coordination of Benefits for ESRD immediately after my kidney transplant almost three years ago, they told me to make my Employer BCBS policy as my Primary coverage and Medicare as Secondary. At Mayo Florida and with all my local providers, it's worked perfectly.
Medicare Coordination of Benefits Department phone number is
1-855-798-2627. Make sure to ask for their ESRD specialist, she was wonderful! Back then, she told me there are just a couple ESRD specialists on staff and there are some unique rules for kidney transplant patients regarding Medicare. One difference is making Medicare secondary when you also have employer commercial insurance.
I am hoping that maybe that small change may make the claims go through "in network" to BCBS without a hassle, since BCBS will be billed first out of the gate.
But before you do anything, please double-check this "Primary/Secondary" issue with Medicare Coordination of Benefits. I think this small admin change may possibly solve the confusion (Hopefully!) 😊

Hi @hello1234, thank you for your input and I will keep the Medicare Coordination Benefits Dept number. It is always nice to be able to speak with Medicare specialist with expertise with ESRD.
Your situation is a little different than hubby's. You applied for Medicare AFTER your kidney transplant and you are only Medicare eligible for 3 years post transplant. Hence, your 30 month coordination period started after your kidney transplant, with your employer insurance as primary and Medicare secondary. However, after your 30 months coordination of benefit period is over, the roles switch with Medicare being primary and employer insurance as secondary. I'm not sure what the policy of your employer was but with most employer, if the employee is Medicare eligible the employer is going to mandate him/her to get Medicare. So after the 30 month coordination period, Medicare is not an option it has to be primary!
My hubby was eligible to apply for Medicare when he was first diagnosed with ESRD. At that time, he started dialysis but didn't have to apply for Medicare right away because he had (and still has) employer insurance. But he chose to apply for Medicare immediately because he was not sure if he was going to be able to continue to work. Medicare was not mandatory then(per his employer) until the 30-month coordination period is over, starting from the month he was diagnosed as ESRD. So in the period since he applied for Medicare, the first 30 months is the employer insurance as primary and Medicare as secondary. Then after the 30 month coordination period, Medicare becomes primary and the employer insurance is secondary. His 30 month coordination period ended on May 2022 so it is now Medicare primary and employer insurance secondary. There is no way to choose to have Medicare as secondary now. It's mandatory that Medicare is primary until he is no longer Medicare eligible!
We don't have any billing issues with our local providers. Every one of his providers file their claims properly with Anthem BCBS and all these claims show up as in-network. Mayo Clinic Az is THE ONLY provider that is filing claims that are showing as out-of-network in our Anthem BCBS account. I think the issue may have to do with the fact that they are out of state provider for us. And if the providers are out of state, they're supposed to file the claims with the blue office that is LOCAL TO THE PROVIDERS. I'm not sure where Mayo Billing is sending the claims but if they send them to the L. A. office, then the claims won't get paid because they are not responsible to pay out claims for services sought outside of California. The claims must go thru the provider's local blue office which is responsible for payment. It specifically says this on the back of our Anthem BCBS card. Hubby's insurance can be used anywhere in the U.S, not just restricted to our state!
I've made this known to Mayo Billing and their response is that it's up to our insurance to decide whether they should process the claims as in network or out of network!! The reality is that providers should know which insurance carriers they are contracted with and thus file the claims accordingly. The Mayo website shows our employer insurance is in-network and Anthem also shows that they are in network so there is no confusion there. But yet, Mayo billing is filing claims as out of network, according to Anthem. If the provider doesn't process the claims properly(like not sending it to the PROVIDER's local BLUE office) then the claims won't get paid and will be treated as out of network! But yet Mayo Billing says it's up to Anthem how the claims should be processed!! And Anthem is telling us that Mayo has to process the claims properly. It's like Mayo Billing doesn't want to take any responsibility that they may NOT be processing the claims properly and they want to want to put all the responsibility on Anthem.
Why did Mayo billing not inform us that Anthem BCBS is out of network during insurance verification prior to transplant, if it is indeed out of network? I think it boils down to the Mayo Billing staff not understanding how to work with Medicare and employer insurance. BTW, hubby's employer insurance is a regular insurance policy with him being the subscriber and I as his spouse is the dependent. It is NOT A SUPPLEMENT!! It is more like a complement insurance, it will cover whatever the primary doesn't, subject to the employer plan's deductible and out-of-pocket.

Hi @caretakermom 😊
Wow, you have earned a PhD in being a caretaker for a kidney transplant! You are just as knowledgeable as the Medicare ESRD Specialist I spoke with regarding all the nuances of Medicare Coordination for ESRD. You are awesome!
I think I may have seen a contact name and number for Mayo Patient Experience on Connect. Maybe that department will work on your behalf to contact the supervisor regarding these multiple variables that are confusing the claim.
Medicare is primary due to ESRD, not age.
Anthem BCBS is secondary, but not a Medicare supplement,
Anthem is in-network, but out of state.
With insurance it's always a paperwork problem. It's getting to the experienced internal person that knows the detailed process for all of these multiple variables. If one detail is missed, it will cause havoc with the claim.
It's important to find the "ESRD Specialist" in billing who may have experience with this special type of claim. (I am sure the auto-pilot process would treat the secondary insurance as a Med Supp since more than 95% of the time, that's correct, but not for an ESRD patient after 30 months).
All these details are why even Medicare has ESRD designated specialists. It has a crazy amount of unique rules. Have you tried Patient Experience for help? 😊

@hello1234, do you mean to speak with the ESRD Specialist in Mayo Billing? I don't believe there is such as a specialist at Mayo. Do you know of the name of the person from Mayo Patient Experience who may be able to help?
I believe Mayo automatically assumes that our secondary insurance is just a supplement, as the majority of Medicare patients have. Mayo doesn't know how to handle EMPLOYER insurance as a secondary to Medicare. It isn't implausible that there are some, not all, people who continue and has to work, even with ESRD(kidney transplant is included in this category). I spoke to a Medicare specialist in ESRD(he is employed by the state of Az and was recommended to me by a Mayo Clinic Az SW) during hubby's transplant recuperation in Az. The ESRD specialist says for people with employer insurance as as secondary to Medicare, the secondary insurance is subject to the employer insurance health plan coverage. Therefore, denial from Medicare is not an automatic denial from the secondary insurance. But apparently Mayo refuses to abide by this rule. Again, all of our other local providers do not have an issue with billing our secondary insurance. Our local providers all bill Anthem correctly(as in-network), except for Mayo Clinic Az.
Incidentally, my hubby did see a Mayo provider prior to transplant(when Anthem was still primary). At that time, Mayo billing sent the claim to the wrong(L.A) office but fortunately, someone at Anthem actually looked at the claim and had to forward the claim to the appropriate Blue office so that it could be processed as in-network. I bet you that's the culprit.
I think this is something Anthem has to help get to the bottom. I worry each time we seek services from Mayo and we're asked to sign an ABN(Advanced Beneficiary Notice) for certain services that Medicare will not cover. Usually that happens if the incorrect diagnostic code is used. And then we have to make a choice to go ahead or refuse these services. If we go ahead with the services then we'll get an out-of-network bill from Mayo. If we refuse the services, then the providers won't be able to give proper care to hubby because we're refusing the services the providers order! We always choose to do the latter, thinking our secondary will cover whatever Medicare doesn't. Instead, we get an out-of-network bill because Mayo billing isn't processing our claims properly!!
All of the services we get from Mayo are ordered by physicians, and not something we're doing voluntarily or convenience. So if the proper diagnostic code is used then Medicare will cover it and therefore the secondary will also regardless if in/out of network. So far I have been able to resolve all the Medicare denial issues by getting the provider to change the diagnostic codes but that takes a lot of time because it has to go thru a different person/dept to make the change. And that's a whole other story that took 3 months to resolve, which Mayo Billing refused to do on our behalf. Fortunately our nurse coordinator is very accommodating and understands my insurance situation and has been able to provide proper coding each time so far. We run into billing issues each time we seek services at Mayo in person. That is why I'm dreading this one-year follow up appointment we have coming up at end of Feb. It will be a 3 day appointment and I'm fully expecting something hubby to sign ABN for some services!!! Sorry for ranting again but it's most stressful not knowing you may get an out-of-network bill!!! I would have better peace of mind if I knew that our secondary would be billed as in-network provider!!

Hi @caretakermom 😊
Unfortunately, I do not have a contact name at Mayo's Patient experience. I just saw it mentioned on one of the Connect discussions. I totally understand your apprehension regarding the upcoming one year anniversary appointment. That visit does have a lot of testing and appointments. I agree with you that the best solution is probably having an experienced Anthem rep reach out to the supervisor in AZ to help with all the details. In- network coding, where to mail the claim etc.
Health Insurance processes and procedures are definitely stressful because there is a lot of money involved in all this coding and your hubby's health is involved. I wish I had something helpful to say to make things better on the insurance front. Hopefully someone else will jump in with greater knowledge than me!