When is it time to change care to a Gerontologist?

Posted by codered032 @codered032, Oct 24, 2021

I am 70yo. Have always been healthy with no chronic illness. Two years ago during my annual physical I was diagnosed with a rare kidney disease, MCD. Having never been on medication, I started taking high dose prednisone. The side effects were awful. I am now taking Tacrolimus with similar side effects. My PCP is 30 something and appears to think this is just the aging process. I am having trouble finding a gerontologist. I don’t want to keep changing doctors but don’t know how or where to start looking.

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Call your local county medical association, or go to their website. Ask or search for a gerontologist. At this time of year, if you are not changing any of your 2021 insurance plans [HMO or PPO], you'll want to ask if a new Dr you are interested in takes them. You could also check with local friends to see who they recommend. Another possible source for you is your local Area Agency on Aging, which may come under the county senior services.

Finding a new Dr, and not having a good comraderie with your current one, can be frustrating and tiring. With you health concerns, it is in your best interest to have confidence in your medical team! Please let me know what you decide to do, and if I can help further, okay?
Ginger

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@gingerw

Call your local county medical association, or go to their website. Ask or search for a gerontologist. At this time of year, if you are not changing any of your 2021 insurance plans [HMO or PPO], you'll want to ask if a new Dr you are interested in takes them. You could also check with local friends to see who they recommend. Another possible source for you is your local Area Agency on Aging, which may come under the county senior services.

Finding a new Dr, and not having a good comraderie with your current one, can be frustrating and tiring. With you health concerns, it is in your best interest to have confidence in your medical team! Please let me know what you decide to do, and if I can help further, okay?
Ginger

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Thank you for your suggestions. I think I will wait until after I get my new medical inc confirmation. I hadn’t thought about that. Thank you

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@codered032

Thank you for your suggestions. I think I will wait until after I get my new medical inc confirmation. I hadn’t thought about that. Thank you

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@codered032 Another thing while you search, is that you might choose to go with an internal medicine doctor who specializes in us "older folk".

We are very close in age. And like you, my medical needs have changed over the decades. I was very fortunate, when going onto Medicare, to have an advocate from the Area Agency on Aging from the county where I lived, advise me to "think ahead" about plans, since I had issues raising their heads. And as she said "you need to consider what might come in the future". By golly, she must have had a crystal ball! My chosen plans at that time have not changed, even with a slight uptick in premiums, due to their great coverage!

It seems younger medical professionals may look to the newest protocols, but still not create a dynamic doctor-patient relationship.
Ginger

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Hi, @codered032 I’m jumping into your conversation a little late. But the mention of Tacrolimus caught my attention. Does your PCP have you on this medication to use as an anti inflammatory drug for your kidneys?

From experience, this is an excellent drug but very strong. It also requires frequent Tacrolimus trough levels in your blood because it can cause serious damage to your kidneys and cause other serious side effect. Trembling and generally feeling ‘awful’ can be a good indication of too much in the blood stream. It’s also important to take magnesium with this as it can deplete the body of magnesium quickly. Instead of magnesium citrate you might consider a daily Magnesium Glycinate supplement. It’s easily absorbed and doesn’t cause intentional issues. The product is sold over the counter but you should check with your physician. I whole heartedly agree with @gingerw with looking for another provider.

If you don’t my asking, who put you on the Tacrolimus and the prednisone? Were you seen by a nephrologist? (Kidney specialist).

REPLY
@loribmt

Hi, @codered032 I’m jumping into your conversation a little late. But the mention of Tacrolimus caught my attention. Does your PCP have you on this medication to use as an anti inflammatory drug for your kidneys?

From experience, this is an excellent drug but very strong. It also requires frequent Tacrolimus trough levels in your blood because it can cause serious damage to your kidneys and cause other serious side effect. Trembling and generally feeling ‘awful’ can be a good indication of too much in the blood stream. It’s also important to take magnesium with this as it can deplete the body of magnesium quickly. Instead of magnesium citrate you might consider a daily Magnesium Glycinate supplement. It’s easily absorbed and doesn’t cause intentional issues. The product is sold over the counter but you should check with your physician. I whole heartedly agree with @gingerw with looking for another provider.

If you don’t my asking, who put you on the Tacrolimus and the prednisone? Were you seen by a nephrologist? (Kidney specialist).

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Just a reminder….there is also a topical Tacrolimus for "itching". I can use ii twice a day and no more because it makes your skin become thin. I also save it for my MFR therapist to use during a session. Guess this is just dicey stuff. It is also quite expensive…..about $150 for a tube of it, the size of toothpaste.

Chris

REPLY
@loribmt

Hi, @codered032 I’m jumping into your conversation a little late. But the mention of Tacrolimus caught my attention. Does your PCP have you on this medication to use as an anti inflammatory drug for your kidneys?

From experience, this is an excellent drug but very strong. It also requires frequent Tacrolimus trough levels in your blood because it can cause serious damage to your kidneys and cause other serious side effect. Trembling and generally feeling ‘awful’ can be a good indication of too much in the blood stream. It’s also important to take magnesium with this as it can deplete the body of magnesium quickly. Instead of magnesium citrate you might consider a daily Magnesium Glycinate supplement. It’s easily absorbed and doesn’t cause intentional issues. The product is sold over the counter but you should check with your physician. I whole heartedly agree with @gingerw with looking for another provider.

If you don’t my asking, who put you on the Tacrolimus and the prednisone? Were you seen by a nephrologist? (Kidney specialist).

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Thank you for jumping in! My nephrologists has not provided much education. I think I am his only patient with MCD. His patients are mostly ESRD and dialysis. Also the insurance companies only allow 15min per total visit. I think my dr is capable but lack knowledge about my dx.most of my understanding has from my own research and being actively involved. I have to ask for routine Tacrolimus levels and when I ask specific questions, his answers are vague. I have learned that all generic Tacrolimus are not equal. There is one manufacturer that I really cannot tolerate but the pharmacist can only provide me with which ever one is the cheapest. I am at the mercy of the drug company 😢! I have requested a file/medical review from Mayo Clinic. That is scheduled 11/02/21. Wish me luck!

REPLY
@artscaping

Just a reminder….there is also a topical Tacrolimus for "itching". I can use ii twice a day and no more because it makes your skin become thin. I also save it for my MFR therapist to use during a session. Guess this is just dicey stuff. It is also quite expensive…..about $150 for a tube of it, the size of toothpaste.

Chris

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Tacrolimus is for MCH kidneys

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@codered032

Tacrolimus is for MCH kidneys

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Brand name PROGRAF cost $1000-$1200!/mo Generic with inc $450-400/mo. I don’t tolerate some brands of generic because of side effects. Sadly I don’t have any control over generic manufacturer

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@codered032

Thank you for jumping in! My nephrologists has not provided much education. I think I am his only patient with MCD. His patients are mostly ESRD and dialysis. Also the insurance companies only allow 15min per total visit. I think my dr is capable but lack knowledge about my dx.most of my understanding has from my own research and being actively involved. I have to ask for routine Tacrolimus levels and when I ask specific questions, his answers are vague. I have learned that all generic Tacrolimus are not equal. There is one manufacturer that I really cannot tolerate but the pharmacist can only provide me with which ever one is the cheapest. I am at the mercy of the drug company 😢! I have requested a file/medical review from Mayo Clinic. That is scheduled 11/02/21. Wish me luck!

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It’s great you’re getting a medical review from Mayo! Just have everything ready and have a list of questions. I hope you can get some more targeted answers.
You’re so right, not all generics are the same. The binders and fillers can make enough difference to mess with us.
I’m so sorry you’re not having the follow through with your nephrologist with education on your disease. Tacrolimus is used for MCD if steroids don’t work. But if the level in your blood is too high it can also reduce the amount of blood flow through your kidney. This is all from personal experience. 😉. So it’s really vital that your doctor knows what a minimally supported trough number should be for you. You’re not a transplant patient so the amount in your system wouldn’t be at a organ rejection level. Just enough to reduce the proteinuria associated with your disease. Good questions for the Mayo team.
https://nephcure.org/livingwithkidneydisease/treatment-options/tacrolimus-prograf/
What are your kidney function numbers like? Bun, GFR/Creatinine?

REPLY
@loribmt

It’s great you’re getting a medical review from Mayo! Just have everything ready and have a list of questions. I hope you can get some more targeted answers.
You’re so right, not all generics are the same. The binders and fillers can make enough difference to mess with us.
I’m so sorry you’re not having the follow through with your nephrologist with education on your disease. Tacrolimus is used for MCD if steroids don’t work. But if the level in your blood is too high it can also reduce the amount of blood flow through your kidney. This is all from personal experience. 😉. So it’s really vital that your doctor knows what a minimally supported trough number should be for you. You’re not a transplant patient so the amount in your system wouldn’t be at a organ rejection level. Just enough to reduce the proteinuria associated with your disease. Good questions for the Mayo team.
https://nephcure.org/livingwithkidneydisease/treatment-options/tacrolimus-prograf/
What are your kidney function numbers like? Bun, GFR/Creatinine?

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BUN 15 Creatinine 1.0 eGFR 66 eGFR 57 glucose is a little high 110 but I am working on it. It’s down from 141. My diagnosis is MCD. My labs have always been good for “my age🤪”. Except for proteinuria. Tacrolimus side effects is the problem. My level was drawn today Waiting for the results. I ask the pharmacist today what were symptoms of toxicity? I checked off 4-5 of the major symptoms. Now I am concerned that my Dr may discontinue Tacrolimus instead of reducing it. I have a phone interview with Mayo Clinic Thursday. I am also trying to get into a level 2 study. Thank you for reaching out

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Thank you for suggesting that I ask Mayo about my Tacrolimus level? Will you please suggest any other questions that I should ask Mayo.

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@artscaping

Just a reminder….there is also a topical Tacrolimus for "itching". I can use ii twice a day and no more because it makes your skin become thin. I also save it for my MFR therapist to use during a session. Guess this is just dicey stuff. It is also quite expensive…..about $150 for a tube of it, the size of toothpaste.

Chris

Jump to this post

I hope that Tacrolimus is helpful? What is your diagnosis, if you don’t mind sharing? I am trying to learn as much as I can about this drug.

REPLY
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