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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@codered032

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.

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Good evening @codered032, Of course, I will be happy to share my life with Tacrolimus with you. I see you have a medical background and so please forgive my elementary vocabulary.

I have what is evidently a form of neuropathic itch. It is devastating and can bring me to my knees is sheer panic. My dermatologist and I have been working on it for a couple of years. During a particularly worrisome flare last year, she recommended Tacrolimus ointment to be lathered on my skin twice a day. That was very helpful and more so than antihistamines that just knocked me out only to wake up in worse shape than before. Along with the Tacrolimus, I did eight weeks of UVB therapy which actually made my skin look healthier. The open wounds and ugly rash dissipated.

Everything that touched my body was analyzed….from laundry soap to shampoo and fabrics. I only wear an item once and then it has to be washed not dry cleaned.

As I understand it, Tacrolimus can make your skin much thinner……if you overuse it. It is also quite expensive. Part of my diagnosis includes myofascial pain syndrome and I have two MFR (myofascial release therapy) sessions every week during which the therapist uses the Tacrolimus.

And now here is the mystery. In August I had a Mako robotic TKR on my right knee. Believe or not, what happened was that the surgical leg succumbed to the worst itch episode I have ever had. Whether it was somehow related to medications used during the surgery, we don't know. However, combined with the post-surgery pain, the itch was very close to intolerable. Tacrolimus came to the rescue once again.

And that, @codered032 is where I am right now. Flares and Tacrolimus, repeatedly. Do you have any experience with that medication used as a topical? Do you have any suggestions about this entire situation? My surgeon doesn't know and I don't see my dermatologist again until Nov 3.

With appreciation for your interest and comments.
Chris

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@codered032

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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Hi, wow, I’d ‘kill” for kidney numbers as perfect as yours. Haha yes, ‘good for your age. Don’t you love that? Sigh… it’s just the actuarial tables that have me in the geriatric group. Surely it’s some kind of mistake?😉

Interesting that the proteinuria is so high. But it is good news in regard to the tacrolimus not impeding your kidneys. I don’t think your doctor will discontinue the Tacro if it’s working. But they might try lowering the dose to help with the side effects. Like I explained before, people who have had solid organ transplants or in my case, a bone marrow transplant, are put on Tacrolimus or another equally strong anti inflammatory (anti-rejection) med to avoid rejecting the organ. Or, with a BMT, the new immune system attacking the receiving host.

Usually the levels are high right after transplant to make sure the organ gets a fair start. But eventually the tacro will be tapered down to lower dosage. In a BMT, we have the ability to actually stop the medication.

Not sure what the dosage should be in your case. So that’s why it might be a good question for the Mayo Consult. If you’re having to request the trough levels, for me, it doesn’t sound very reassuring that your doctor is concerned enough to watch these levels. It’s a pretty powerful drug.
What’s your dosage? And does he have a targeted trough?

Also the level of tacrolimus is really affected by other medications. One med i was on, just by its properties, tripled the amount of tacrolimus held in my body. I went into acute renal failure as we were working out the new drugs, switching from IV to pills. I was in the clinic during this time so we caught everything right away. Once we regulated the amount, I stayed on Tacro for 2.3 years. It was a miracle drug for me.
I’m now off but still taking magnesium. So it was interesting to see my local lab numbers this morning. Mag usually shows up at 1.7while taking tacro. I’ve been off Tacro for a month and my mag showed up at 2.1

Are you taking any other medications?

With your medical background ‘feel the force’. That will help guide you to forming some good questions. It’s always strange being on the receiving end of medical care when you’re well versed in the caregiving side.
What are your biggest concerns?

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@artscaping

Good evening @codered032, Of course, I will be happy to share my life with Tacrolimus with you. I see you have a medical background and so please forgive my elementary vocabulary.

I have what is evidently a form of neuropathic itch. It is devastating and can bring me to my knees is sheer panic. My dermatologist and I have been working on it for a couple of years. During a particularly worrisome flare last year, she recommended Tacrolimus ointment to be lathered on my skin twice a day. That was very helpful and more so than antihistamines that just knocked me out only to wake up in worse shape than before. Along with the Tacrolimus, I did eight weeks of UVB therapy which actually made my skin look healthier. The open wounds and ugly rash dissipated.

Everything that touched my body was analyzed….from laundry soap to shampoo and fabrics. I only wear an item once and then it has to be washed not dry cleaned.

As I understand it, Tacrolimus can make your skin much thinner……if you overuse it. It is also quite expensive. Part of my diagnosis includes myofascial pain syndrome and I have two MFR (myofascial release therapy) sessions every week during which the therapist uses the Tacrolimus.

And now here is the mystery. In August I had a Mako robotic TKR on my right knee. Believe or not, what happened was that the surgical leg succumbed to the worst itch episode I have ever had. Whether it was somehow related to medications used during the surgery, we don't know. However, combined with the post-surgery pain, the itch was very close to intolerable. Tacrolimus came to the rescue once again.

And that, @codered032 is where I am right now. Flares and Tacrolimus, repeatedly. Do you have any experience with that medication used as a topical? Do you have any suggestions about this entire situation? My surgeon doesn't know and I don't see my dermatologist again until Nov 3.

With appreciation for your interest and comments.
Chris

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Your story is horrific. I can somewhat identify with your itching. I have allergies of unknown origin. The itching and hives has required a visit to the ER several times. I have been prescribed an antihistamine cocktail to take as soon as I have symptoms. Reading your story makes me sad. I will add you to my prayer list.

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Hi
Just saw your message. I have a dx of MCD. Tacrolimus is working but the side effects are troubling

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Hello all
This is my first visit to this group. I am 70 hrs old. I have always been healthy with no chronic illness. During my annual physical exam in September 2019, I was diagnosed with MCD, a chronic kidney disease with no cure. The necessary medication to treatment my condition comes with an abundance of severe side effects. My PCP of 25 years retired in 2019 which resulted in my search for a new doctor. It was at my first annual physical with my new PCP that I was diagnosed with MCD. My issue is that all of my current(new doctors) appear to be in their 30’s and don’t seem interested in keeping me healthy. I recently heard about a health organization called Oak Street Health. They only treat patients on Medicare. It appears that they have offices in several states. They have been doing a lot of advertising in my area. Has anyone heard of this organization? If so can you please provide feedback. I am interested in finding a dr who doesn’t feel like my symptoms are all age related and a few pills will make me comfortable. I am only taking medication related to my kidney dx. No other chronic issues.
I live in Cincinnati Oh.

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@codered032

Hello all
This is my first visit to this group. I am 70 hrs old. I have always been healthy with no chronic illness. During my annual physical exam in September 2019, I was diagnosed with MCD, a chronic kidney disease with no cure. The necessary medication to treatment my condition comes with an abundance of severe side effects. My PCP of 25 years retired in 2019 which resulted in my search for a new doctor. It was at my first annual physical with my new PCP that I was diagnosed with MCD. My issue is that all of my current(new doctors) appear to be in their 30’s and don’t seem interested in keeping me healthy. I recently heard about a health organization called Oak Street Health. They only treat patients on Medicare. It appears that they have offices in several states. They have been doing a lot of advertising in my area. Has anyone heard of this organization? If so can you please provide feedback. I am interested in finding a dr who doesn’t feel like my symptoms are all age related and a few pills will make me comfortable. I am only taking medication related to my kidney dx. No other chronic issues.
I live in Cincinnati Oh.

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@codered032 When it is time to enlist a new-to-you medical doctor, the hunt can be frustrating, and time-consuming. In the past, I have queried my friends who they use, or would not use, for a doctor. Hearing from them first-hand helps me. Would you be able to do that? Do you have a nephrologist for your kidney issue? If so, ask him/her who they would refer you to, someone who they have worked with before that made a good team. I did that to find my current nephrologist, and haven't been disappointed at all!

Something I have done in the past was to make a tentative decision on a doctor, then make an appointmet and go in to talk to them. and told them I wanted to see what their thoughts were on specific issues that were important to me, to see if we were compatible. I guess a little unusual, but it worked!

I look forward to hearing from you what you decide to do.
Ginger

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@codered032

Hello all
This is my first visit to this group. I am 70 hrs old. I have always been healthy with no chronic illness. During my annual physical exam in September 2019, I was diagnosed with MCD, a chronic kidney disease with no cure. The necessary medication to treatment my condition comes with an abundance of severe side effects. My PCP of 25 years retired in 2019 which resulted in my search for a new doctor. It was at my first annual physical with my new PCP that I was diagnosed with MCD. My issue is that all of my current(new doctors) appear to be in their 30’s and don’t seem interested in keeping me healthy. I recently heard about a health organization called Oak Street Health. They only treat patients on Medicare. It appears that they have offices in several states. They have been doing a lot of advertising in my area. Has anyone heard of this organization? If so can you please provide feedback. I am interested in finding a dr who doesn’t feel like my symptoms are all age related and a few pills will make me comfortable. I am only taking medication related to my kidney dx. No other chronic issues.
I live in Cincinnati Oh.

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@codered032 Welcome to Connect! Finding a new doctor is always so difficult, isn’t it? I have had to change doctors 4 times since we moved here. They were good doctors, but moved on to higher positions. I found my doctors by checking with the hospital in our area. The web site usually allows you to see where they went to school and what they specialize in. You can compare this list with recommendations from your friends. A geriatrician is good but with MCD, you’ll really want a kidney specialist, a nephrologist. You say there is no cure for this disease, but you want to stay in the best health you can.
I provided a link to Oak Street Health for you I know absolutely nothing about it, so cant give an evaluation.
https://www.oakstreethealth.com/news/oak-street-health-to-enter-19th-state-with-expansion-into-oklahoma-missouri-and-new-mexico
Think you can start your search tomorrow by going to your hospital’s website?

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@codered032

Hello all
This is my first visit to this group. I am 70 hrs old. I have always been healthy with no chronic illness. During my annual physical exam in September 2019, I was diagnosed with MCD, a chronic kidney disease with no cure. The necessary medication to treatment my condition comes with an abundance of severe side effects. My PCP of 25 years retired in 2019 which resulted in my search for a new doctor. It was at my first annual physical with my new PCP that I was diagnosed with MCD. My issue is that all of my current(new doctors) appear to be in their 30’s and don’t seem interested in keeping me healthy. I recently heard about a health organization called Oak Street Health. They only treat patients on Medicare. It appears that they have offices in several states. They have been doing a lot of advertising in my area. Has anyone heard of this organization? If so can you please provide feedback. I am interested in finding a dr who doesn’t feel like my symptoms are all age related and a few pills will make me comfortable. I am only taking medication related to my kidney dx. No other chronic issues.
I live in Cincinnati Oh.

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Hello @codered032

I would like to join Ginger and Becky in welcoming you to Mayo Connect. I can certainly understand that you want to find a geriatrician. I'm a few years older than you and I've been thinking about making a change to a geriatric doctor as well. Both Ginger, @gingerw, and Becky, @becsbuddy had some great ideas on how to find a specialist.

Previously, when my PCP retired I did an interview with a couple of doctors in the same hospital system. I found that the doctors were most willing to talk with me about my various health issues and found it understandable that I wanted to get to know them first. As Ginger suggested, also asking friends and people in your community for names of doctors that they have been pleased with is also a good idea. As Becky said, it is important that you seek out the help of a good nephrologist as well

Here is a link to WebMD where you can find a list of geriatric specialists near you, https://doctor.webmd.com/find-a-doctor/specialty/family-practice-geriatric-medicine

Just click on the state where you live and then a listing of cities will come up. From there you can find a geriatrician close by.

I hope you find a doctor who communicates well with you and with whom you feel comfortable. Will you post again and let me know how you are doing with your search?

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Hi there … now this is just MY experience, so don't take it as everyone is all the same. When I moved down here to (what I call) the "sticks" of VA, I first went to a Geriatric Internist. The first visit he was very nice (looked about my same age!); the second time it felt like a "conveyor belt" appt., if you know what I mean. So when I had to go back, I didn't ask for anyone in particular (there are 6 doctors in the practice) and I got a Physicians Assistant … a probably 30-ish guy (or thereabouts) and he is excellent! He listens, asks questions, offers suggestions, and actually spends time with a patient. I'm sticking with him. I've wondered if they may be training their new doctors to also be "people persons" also, rather than just the "serious, stick to the facts" type. Just thinking.
Barb

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@amberpep

My daughter is a Nurse Practitioner and, like many PAs and ARNPs, they treat the person more holistically. My daughter works for herself and treats residents in the Assisted Living Facilities. She is essentially my doctor and I am lucky to have her next door.
My favorite providers in the past have been Nurse Practitioners and Physician Assistants. You’ll get more time and interest and patience from a PA and ARNP. Doctors are focused on diagnostic and specific treatments. ARNPs and PAs spend more time on assessment, prevention and wellness based treatments. I like to say Physicians are like Joe Friday of “Just the facts Ma’am”
fame.

FL Mary

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@amberpep

Hi there … now this is just MY experience, so don't take it as everyone is all the same. When I moved down here to (what I call) the "sticks" of VA, I first went to a Geriatric Internist. The first visit he was very nice (looked about my same age!); the second time it felt like a "conveyor belt" appt., if you know what I mean. So when I had to go back, I didn't ask for anyone in particular (there are 6 doctors in the practice) and I got a Physicians Assistant … a probably 30-ish guy (or thereabouts) and he is excellent! He listens, asks questions, offers suggestions, and actually spends time with a patient. I'm sticking with him. I've wondered if they may be training their new doctors to also be "people persons" also, rather than just the "serious, stick to the facts" type. Just thinking.
Barb

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It's been my experience that, regardless of the specialty, medical people who are women are more likely to be "people persons" than men. I think women are more likely to be good at communicating than me. I'm male and not a good communicator so I always choose a woman given the opportunity. I'm not being sexist, it's just been my experience.

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@imallears

@amberpep

My daughter is a Nurse Practitioner and, like many PAs and ARNPs, they treat the person more holistically. My daughter works for herself and treats residents in the Assisted Living Facilities. She is essentially my doctor and I am lucky to have her next door.
My favorite providers in the past have been Nurse Practitioners and Physician Assistants. You’ll get more time and interest and patience from a PA and ARNP. Doctors are focused on diagnostic and specific treatments. ARNPs and PAs spend more time on assessment, prevention and wellness based treatments. I like to say Physicians are like Joe Friday of “Just the facts Ma’am”
fame.

FL Mary

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In reply to @imallears …. I have been on the roller coaster of general practitioners and I lost another one. I just accepted a nurse practitioner in internal medicine this time and your comments sound very hopeful. Thx so much💕

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