Generic Prograf fails to show for Labs

Greetings Everyone,

I am 6 years post Liver Xplant as of 09 Jan., 2014.

Have been on 1.5 mg of Prograf (PG) for about
3 + years.

As of the beginning of October, 2013 it started
failing to show in my monthly labs at the Jacksonville
Mayo Clinic.

As a benchmark when I was discharged from the hospital
after my Xplant I was on 8.5 mg of PG.

My Liver Xplant Cordinator (TC) thought that I wasn't
taking it at all. So my TC increased PG to 5mg Q12D.
Still No Joy.

Then started on both oral & IV Steroids/Solumedrol. First dose
1000 mg IV then every other day 500mg & 10 mg oral. Prograf level ZERO! So PG increased to 7 mg & a Liver Bx. First signs of rejection
started around middle October.

All the steroids have blown my glucose serum out of the water! From
my normal of 100's - to around low 120's. Steroids cranked me
to the 300's - high 500's👿.

Have had 6 Liver Bx's between end of Nov. through this
past Thurs. 23 Jan.,14.

At my highest I was on 15 mg of PG.

TC had me discontinue my vitamins to see if they were
the cause. No Joy!

Finally thanks to my wife we found the cause. The generic
PG is a solid white capsule embossed with the number one.
She even beat out my Xplant Dr. & Nurse.

For me the one that worked was two-tone white & tan.

My wife packs my meds for me and is my portable memory unit
as I have short term memory loss related to an excessive
amounts of Ammonia in my blood prior to Xplant. Normally it wears off
after Xplant, but not for me.

We often joke about the 'In sickness & in health'
clause in our wedding ceremony the in sickness part
has really got a a workout. LOL

So if you know anyone on generic PG who are experiencing
similar symptoms have them check the PG.

MD

Welcome to the forum. It is good to hear from folks who are --or usually are--doing well after TP. Hoping there is joy again soon..

Best,

Greetings All,

As of Friday 24 Jan., 2014 Rejection has cleared up although still on oral Steroids and Ditilizem and according to my TC an old school remedy of Diflucan to help with boosting Prograf levels. The levels are almost... normal but not perfect yet. Will be glad to be rid of steroids I was 547 glucose level on Sunday PM. Yuck!

Mad Doc,
I am 6 months out from my tx. on 3.5 brand version of Prograf every 12 hours.

I was interested by your comment about your short term memory. I had moderate HE before tx and was on lactulose and Xifaxan.

My only problems thus far post transplant are being exposed to CMV by my donor, forehead headaches from the Prograf and my short term memory has yet to return to my satisfaction.

I know, I am greedy, I want it all back!!!!

Welcome to our Forum!

Susie

SUSIE_SASSAFRASS,

Please feel free to ask any other questions as you progress along your Transplant path. :)

Yuck! Lactulose oh how I hated the taste of that! Oh, and aren't the hallucinations fun! I saw little people planting gold coins in the ceiling corners of my bedroom, chrome metallic spiders, thought I stole a school bus and dumped it in a lake by Mayo Clinic, while in the hospital one of the numerous time Pre-Xplant told my wife as I was being wheeled in the bed for a roll down the hall to open the garage door before we crashed into it and lots more fun times. LOL

Did your Doc try Valcyte Pre-Xplant to prevent CMV? You didn't specify if you had a Liver Xplant which it is contraindicated for.

In relation to Short Term Memory Loss (STML) are you still on Prednisone? My TC told that it inhibits the memory as well as giving you eye floaters. Which I hate! Those are the little black things that you see start in the corner of your eye and then traipse their way across it. Seems at first like a dust mote or something similar so you take a swing at them to get them out of the way, yet they're still there. Arrgghhh!

I also worked for almost 20 years in Long Term Healthcare (LTC) which included Alzheimer's Residents/Patients. So I learned a few coping mechanisms and workarounds thanks to that.

I first used a digital recorder a la Jekyll (check Netflix for it great show by the BBC) for quite a while until Apple came out with the iPhone 4S. I love Siri, besides my wife, Siri IS my portable memory. Although Siri can't load my meds, but she and my wife both remind me twice daily for oral meds and 4 times daily for my insulin shots.

Sometimes things stick and sometimes they don't. She can tell/ask me something and 5 minutes later I have no clue what she is talking about. It may be something you and your significant other will have to get used and adjust to.

Have you had a memory test? I've had two. Both of which confirmed what we already knew. Although if you have ADD like me and are used to running your brain at 90% optimal efficiency (See Below) even a small distraction can effect your memory abilities.

The STML drives my wife crazy, although I joke with her that she doesn't need to drive, she's within walking distance. LOL Sometimes things stick and sometimes they don't. She can tell/ask me something and 5 minutes late I have no clue what she is talking about.

As far as the See Below: I am a Biblical Scholar and Metaphysician. I hold 2 Doctorates a Dr. of Divinity (D.D.) and a Ph. D. in Metaphysics, am a Collegiate Lecturer, Writer both non-fiction e.g. Technical articles on Christian Arcana and on various World Religions in general and fiction currently working on a story entitled Confessional about a priest who unbeknownst to himself is a Serial Killer, Father of 6 (Ages 21, 19, 17, 15, 11, & 9), Conspiracy Theorist, JFK, RFK, & MLK Assassination Researcher, Blogger (http://maddoctortom.blogspot.com/)and more, but you get the idea. :)

As far as the PG Forehead HA's I have had no trouble with that. Although occasionally I do get screaming Migraines for which I take Imitrex.

Depending on your age you may or may not get the following reference. I am the Six Million Dollar Man!
See this for an Idea. http://www.youtube.com/watch?v=HoLs0V8T5AA&list=PLouqiIwKCnyfwHZChs605_ROJK-dyAwi0&index=1

Now you'll see why:
1) Liver Transplant
2) Cryoablation on my heart r/t SVT's
3) 4 fractured (Fx) vertebra three were repaired with Titanium cages and bone cement
still debating what to do about the fourth one.
4) Numerous bilateral knee surgeries
5) One surgery on right ankle
6) One GSW to Right Tibia (Mogadishu while in U.S. Army)
7) One abdominal knife wound (at age 13 protecting a girl)
8) Fx Clavicle
9) Fx Right Great Toe
10) Fx Right Metatarsal 2, 3, & 4
11) Fx Right Patella
12) Fx Right Thumb
13) Fx Right Ribs (twice different times and ribs)
14) Right Plantaris muscle repair
14) Left Shoulder Dislocation
15) Way too many scars to list LOL

I actually asked my Dr. to remove my legs when I was 8 so I could be Bionic just like Steve Austin. He did at least play along with me stating, "We don't have the technology."

Everything listed above occurred at different timeframes and dates/years, with the exceptions of the vertebra T7, T8, & T11 those occurred simulataneously, L5 occurred a different time.

MD,

And I thought my partner was the bionic man! You WIN!

He is heading to his third re-birthday as a TP survivor with active Hep C and doing well. He has had 3 major surgeries since TP (two huge shoulder repairs and a GIANT hernia that required they open half the TP incision -- tucked it back in and covered it with mesh!). He wore a belly band for a year before they would agree to do it...it looked like the liver was trying to "get out."

No cancer in the new liver, but that was quite a worry before TP.

Best to you as you improve! Or lets hope there is Joy in Mudville soon.

Hugs,

Liver disease is only for the brave!
Carol

Hi Mad Doc.

Which generic form of prograf were you taking? My mom takes Hecoria. Hecoria, is a branded generic (Novartis).

I am sorry to read that you had 6 biopsys in the last 2 months. Why did it take them so long to pin point that it was the prograf causing you to experience issues?

Glad to know, you are doing better. It's a very bumpy road, but a road well worth driving.