Immune Suppression Meds

Posted by hello1234 @hello1234, Jun 24, 2023

Hi Transplant Family!
I hope everyone is doing well. I have a question. My Tacrolimis level is out of range and needs adjustment. After two years post kidney transplant, does your transplant center make the dosage adjustment or does your local nephrologist?
Many thanks!

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Good morning
I live in Canada so things might be a tad different here. But my TAC adjustments are all made by my transplant team. It could either be the Dr or the pharmacist. My gastroenterologist, as I'm a liver transplant patient, only prescribes and or changes my ursodiol doses. Hope that helps.🤗

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@footballmum

Good morning
I live in Canada so things might be a tad different here. But my TAC adjustments are all made by my transplant team. It could either be the Dr or the pharmacist. My gastroenterologist, as I'm a liver transplant patient, only prescribes and or changes my ursodiol doses. Hope that helps.🤗

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Hi @footballmum 😊
It's so nice to hear from you!
Your scenario in Canada is how I understood it was going to work.
I thought the experienced transplant team would drive my high risk immune suppression meds and my local nephrologist would handle everything else. According to my coordinator, my local nephrologist controls everything, including the immune suppression meds. My local nephrologist is excellent, but the transplant team is definitely more experienced with these immune suppression meds, (of course).

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I wish you good luck 🙏 keep on fighting! God bless 🙏

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@hello1234
I am so late in this advanced conversation
By any chance, has the new target Tacro trough levels been decided (I do understand there are various variables contributing to that level such as Mycophenolate /Prednisone etc stable gfr/creatinine #s)
Also have you noted on the new dosage if your lymphocytes are better than previous readings.
Thanks & Regards

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@l0lag0lag0b3

@hello1234
I am so late in this advanced conversation
By any chance, has the new target Tacro trough levels been decided (I do understand there are various variables contributing to that level such as Mycophenolate /Prednisone etc stable gfr/creatinine #s)
Also have you noted on the new dosage if your lymphocytes are better than previous readings.
Thanks & Regards

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Hi @l0lag0lag0b3 😊
It's so great to hear from you!
Due to my CMV and BK virus infections, my Mycophenolate has been reduced to 250mg twice a day, so my Tacrolimis target range has been maintained at the 6 to 8 range.
I had a squamous cell patch removed last week and it became infected. My WBC is up and now I am on Doxycycline twice a day. The sutures are very painful. I am scheduled to have them removed on Monday morning. I am hoping I can make it that long! There is always something to deal with.
How are things going with you?

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Hello @hello1234
It's always good hear from you, glad to hear you have stabilized.. which is very important in this journey

I have been offline for sometime, first issues with my wife, then myself... life goes on, My wife has the lower lumbar (L3/L4) issues the bone is degenerating.. so visit to Couple of Dr's (spine & endo). Sometimes I wonder if the Kidney donation has triggered this..not sure but I am keeping on researching this. (obviously no Dr is going to acknowledge that)

On my end couple of things: GFR is constant, no infection etc, however the Lymphocyte count is decreasing.... from what I read around, Tacrolimus / low nutrition diet can cause this - hence I was asking you that if noticed in upward change in the Lymphocyte count after reducing the Tacrolimus levels.
I must admit .. I am not a big eater.. net net my calories intake is lower than what I am burning, So I am getting stuffed with more food, eat Fish and added low fat turkey. Let's see what the next test reveals. There is a talk of reducing my tacrolimus does from 1.5 mg to 1mg.. let's see what happens.
Yes I have been reading about the quality of local nephrologist (post transplant) it is sometimes questionable ! ( not sure if such a comment is repulsive to some). but such is life..
At a national level all Nephrology Doctors treating post kidney transplant .. need to have minimally fellowship in Kidney transplant.

Let me know if possible - about the Lymphocytes as they are one of the primary fighters of infection be it viral or bacteria: example being Covid.
Regards

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@l0lag0lag0b3

Hello @hello1234
It's always good hear from you, glad to hear you have stabilized.. which is very important in this journey

I have been offline for sometime, first issues with my wife, then myself... life goes on, My wife has the lower lumbar (L3/L4) issues the bone is degenerating.. so visit to Couple of Dr's (spine & endo). Sometimes I wonder if the Kidney donation has triggered this..not sure but I am keeping on researching this. (obviously no Dr is going to acknowledge that)

On my end couple of things: GFR is constant, no infection etc, however the Lymphocyte count is decreasing.... from what I read around, Tacrolimus / low nutrition diet can cause this - hence I was asking you that if noticed in upward change in the Lymphocyte count after reducing the Tacrolimus levels.
I must admit .. I am not a big eater.. net net my calories intake is lower than what I am burning, So I am getting stuffed with more food, eat Fish and added low fat turkey. Let's see what the next test reveals. There is a talk of reducing my tacrolimus does from 1.5 mg to 1mg.. let's see what happens.
Yes I have been reading about the quality of local nephrologist (post transplant) it is sometimes questionable ! ( not sure if such a comment is repulsive to some). but such is life..
At a national level all Nephrology Doctors treating post kidney transplant .. need to have minimally fellowship in Kidney transplant.

Let me know if possible - about the Lymphocytes as they are one of the primary fighters of infection be it viral or bacteria: example being Covid.
Regards

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@l0lag0lag0b3
Neutropenia and leukopenia is definitely helped with the reduction of immune suppression meds!
I went from 1000mg Mycophenolate two times a day to 250mg twice a day.... MAJOR difference. I went from 1.0 WBC with daily Procrit shots.....to 5.0 WBC with no shots 😊

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@hello1234

@l0lag0lag0b3
Neutropenia and leukopenia is definitely helped with the reduction of immune suppression meds!
I went from 1000mg Mycophenolate two times a day to 250mg twice a day.... MAJOR difference. I went from 1.0 WBC with daily Procrit shots.....to 5.0 WBC with no shots 😊

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Thanks @hello1234
as I am reading this is great news specially the jump from 1K to 5K wbc count .. well done & Best Wishes

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@l0lag0lag0b3

Thanks @hello1234
as I am reading this is great news specially the jump from 1K to 5K wbc count .. well done & Best Wishes

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@l0lag0lag0b3
Remind me....what are your current immune suppression meds and dosages?
Also, I am so sorry to hear that your wife is going through bone and endo issues. It seems like all of my girlfriends that are my age are having osteoporosis and fracture issues ...as well as endo hormone challenges.
I am happy to hear that most of your lab results are good and stable. Hopefully, a small reduction tweak in your TAC dosage will help out with the WBC. 😊

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@hello1234

Hi @loribmt 😊
It is so great to hear from you! I hope you are doing well. My monthly labs are requested by my local nephrologist.
But whenever there was a concern about my Tacrolimis level, I would contact Mayo for the adjustment.
I was under the impression that the transplant center was "in charge" of the immune suppression meds adjustments.
When I contacted my transplant coordinator yesterday she made it very clear, "don't call here, call your local nephrologist for any adjustment".
I just want to make sure that's the actual policy or are other transplant coordinators helping their patients with the adjustments of their immune suppression meds after two years post kidney transplant?

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If you are no longer seeing your transplant team on a regular basis and your appointments are always with your nephrologist than he/she should be taking care of your meds. My nephrologist will check with the transplant team for advice on changing immuno drugs.

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