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Author Topic: Reducing meds 2 years post transplant?  (Read 4465 times)
Angiepkd
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« on: April 15, 2016, 08:28:12 PM »

Has anyone been able to reduce some medications post transplant?  I am not talking about my prograf and cellcept, but some of the additional ones.  I recently stopped my Zoloft, (by tapering) as I didn't feel like I needed it at this point.  What about protonix?  I have never suffered from heartburn and don't take prednisone.  I was originally on a generic Pepcid, which was working fine.  After a hospital stay the switch to protonix was made, without an explanation.  I have had some weird symptoms since making the switch, but couldn't pinpoint why. I was also put on Lipitor about 6 months after tx. Since my prograf has been reduced to 1mg a.m and 0.5 mg p.m., my labs have been perfect and I have no history of high cholesterol. I know I am so blessed to have received this gift, and I have no desire to risk rejection, but I don't feel like myself and am wondering if it may be due to the additional meds. I still have to take fluconazole due to a nasty bout of cryptococcal meningitis, but they reduced it by half, and that seems to be helping my energy level.  The rest of my meds are supplements, i.e. vitamin B12, D, iron and folic acid.  Reducing the anti-fungal and losing the Zoloft have helped my energy level and motivation a lot (although the withdrawal from Zoloft was ridiculously awful, even with tapering).  I guess I am wondering if anyone else has had similar troubles after tx.  Feeling good, but wanting more out of this second chance. 
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
DialysisGoneFOREVER
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« Reply #1 on: April 15, 2016, 10:06:20 PM »

That's for depression right. That usually isn't part of your transplant meds.
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SutureSelf
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Hey there!

« Reply #2 on: April 15, 2016, 11:34:56 PM »

Has anyone been able to reduce some medications post transplant?  I am not talking about my prograf and cellcept, but some of the additional ones.  I recently stopped my Zoloft, (by tapering) as I didn't feel like I needed it at this point.  What about protonix?  I have never suffered from heartburn and don't take prednisone.  I was originally on a generic Pepcid, which was working fine.  After a hospital stay the switch to protonix was made, without an explanation.  I have had some weird symptoms since making the switch, but couldn't pinpoint why. I was also put on Lipitor about 6 months after tx. Since my prograf has been reduced to 1mg a.m and 0.5 mg p.m., my labs have been perfect and I have no history of high cholesterol. I know I am so blessed to have received this gift, and I have no desire to risk rejection, but I don't feel like myself and am wondering if it may be due to the additional meds. I still have to take fluconazole due to a nasty bout of cryptococcal meningitis, but they reduced it by half, and that seems to be helping my energy level.  The rest of my meds are supplements, i.e. vitamin B12, D, iron and folic acid.  Reducing the anti-fungal and losing the Zoloft have helped my energy level and motivation a lot (although the withdrawal from Zoloft was ridiculously awful, even with tapering).  I guess I am wondering if anyone else has had similar troubles after tx.  Feeling good, but wanting more out of this second chance.

Make an appointment to see your TRANSPLANT MEDICINE nephrologist.  Say exactly how you're feeling as you just wrote for us.  I'm pretty sure the both of you will come up with a workable plan.  Best wishes. - SutureSelf
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I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
cattlekid
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« Reply #3 on: April 16, 2016, 05:50:30 AM »

The protonix was the one thing that I was told that I could take as needed.  Well, boy do I need it.  No matter when I eat dinner or what I eat, if I don't take a protonix before bed, the acid reflux gets me bad.

The one medication I would personally like to reduce/eliminate is the prednisone.  I've been hounding my clinic at every yearly visit.  I have my next yearly visit in May and I will beat the drum again.  I don't think it will get me anywhere, but it can't hurt to try.
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SooMK
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« Reply #4 on: April 16, 2016, 05:38:21 PM »

I was taking Ranitidine after transplant and about the one year mark my neph said I could take it "as needed" and I have taken once or twice if my stomach doesn't feel so good but otherwise have been off it for about a year. I've been on 10 mg lipitor for years before my transplant and no one seems interested in taking me off it. I'm only on the tac and the Myfortic and the lipitor and feel pretty good most of the time. I will have an odd day of low energy but not like you describe. I hope you can get it sorted out.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Simon Dog
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« Reply #5 on: April 16, 2016, 07:41:53 PM »

The protonix was the one thing that I was told that I could take as needed.  Well, boy do I need it.  No matter when I eat dinner or what I eat, if I don't take a protonix before bed, the acid reflux gets me bad.

The one medication I would personally like to reduce/eliminate is the prednisone.  I've been hounding my clinic at every yearly visit.  I have my next yearly visit in May and I will beat the drum again.  I don't think it will get me anywhere, but it can't hurt to try.
I'd ask your neph about the recent paper linking regular intake of proton pump inhibitors with an increased risk of renal failure.   This is big news in the medical community as it calls use of a formerly "harmless" drug into question.

I've got a brand new ceramic hep thanks to the wonderful side effects of prednisone (avascular necrosis)
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Deanne
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« Reply #6 on: April 16, 2016, 08:33:28 PM »

I'm 2 years out and take:

Tacrolimus
Myfortic
Prednisone (5 mg)
Red yeast rice
Aspirin
Magnesium

I tried to convince them to let me stop prednisone, but my neph said the tx center is actually putting their patients back on it because they're seeing better long-term graft survival with it.

Red yeast rice is for Cholesteral. My levels were good and my neph was going to take me off mess for it, then asked me to take this supplement instead because of results she's seen with other patients. My levels dropped even more than they were at on prescription medication.

Aspirin is preventive. I had a DVT many years ago.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Simon Dog
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« Reply #7 on: April 16, 2016, 08:45:56 PM »

My neph told me he saw a patient who had been something like 30 years post-tx, graft still working well.   The senior attending decided to reduce the guys meds since he obviously didn't need them, after which the kidney died.   My doc said he always remembers this case as an example of why to not mess with what is working.
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DialysisGoneFOREVER
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« Reply #8 on: April 16, 2016, 09:09:08 PM »

My neph told me he saw a patient who had been something like 30 years post-tx, graft still working well.   The senior attending decided to reduce the guys meds since he obviously didn't need them, after which the kidney died.   My doc said he always remembers this case as an example of why to not mess with what is working.

If you very gradually reduce meds and check your blood every few days that should NOT happen!!
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Angiepkd
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« Reply #9 on: April 17, 2016, 07:53:08 PM »

Thank you all for your replies!  I am still in the transplant clinic because of the meningitis, even though I received my kidney over 2 years ago, so I see the transplant neph every 6-8 weeks. I am most definitely not wanting to make any changes to my prograf or cellcept, as they are working perfectly. The recent studies linking ppi's like protonix to chronic kidney disease worries me, so I will talk to my doc at my next visit about using as needed.  The Lipitor has not been linked to ckd (from what I can tell), but can cause lots of other issues.  The reduction of fluconazole (anti-fungal) has had some positive effects, as has stopping the Zoloft. I just want to get all I can out of this transplant. I have grandbabies to chase!  :2thumbsup;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
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