Transplant patients on Prednisone, Prograf, some not... What do I ask for?

[Sax-O-Trix]

I am wondering about the immuno drug therapy used after transplant.  It seems there is not a "standard" combination of drugs used.  Some don't have the dreaded Prednisone and others do (My neph uses it, but I will ask for another drug if I am given the chance) and the same with Prograf (I worry about the diabetes factor with this one and tremors.)  What are the choices? Not that we have too many "choices" as tx patients, but I'd like to think we can be informed and advocate for ourselves if we can.

What was your immuno drug regimen right after your transplant?  Could you list exact drugs and dosages?  Side effects?  I want to research everything about these drugs so I am as informed as possible when I meet with the neph the next time I see him (which will be when we are scheduling the surgery.)  I appreciate your help with this!

[paris]

I take Prograf and Cellcept.  My transplant center does a prednisone free protocol.  I had huge iv does during surgery, along with chemo but no prednisone after.   Prograf and Cellcept aren't too bad.  I have the tremors, but am always assured they will get better.  I have had the dosage changed three times, while they find the dosage that works for me.    Prograf raised my blood sugar some the first week, but it quickly went back to normal and haven't had any problems since.  I am 2 months past tx, so some things we are still working on.

Prograf --4mg twice a day.    Now down to 2mg twice a day
CellCept---started at 3, 250mg  twice a day.  Now taking 2, 250mg twice a day.
Septra - one tablet M W F at night  to prevent pneumonia
Prilosec-- 20mg  once a day  to protect the stomach from all the pills!   This can be over the counter.
Colace--100mg   once a day for constipation (from all the pills!)
Zovirax BID - 400mg   2 tablets twice a day  To prevent viral infections.


I take others for BP and for other health issues.      Each center seems to have a little different program, but basically they are similar.   Did I give you too much information or not enough?      It pays to have information before so things aren't a huge surprise after surgery.   I will be looking forward to hearing all about your transplant.   The actual surgery and recovery are much better than the anticipation!!  You'll be up and taking steps the first day.     Keep posting!

[edersham]

I started out on basically the same protocol as Paris but after 4 mo I was having low white blood cell counts and they thought it was due to cellcept, so I wound up on 3 mo of prednisone instead of cellcept. The prednisone raised holy hell with my blood sugar(100 pts higher on average), caused me to gain 20 pounds and gave me shortness of breath.  They finally figured out that either bactrim or valcyte was the cause of the wbc problem and I've been off the prednisone (10 mg) for a week now.  The blood sugar and blood pressure dropped immediately and I'm working on the 20 lbs. I'm now on 1/1 prograf and 750 twice a day cellcept In my opinion prednisone is horrible stuff and those who have to take even higher doses of it than I did have my total sympathy.

Ed

[Sunny]

I am 5 weeks post transplant.
I take Prograff 4 mil twice a day,Mifortic 360 mil twice a day,and Prednisone 5 mil once a day.Because I have high PRA's my surgeon is of the opinion I need prednisone to prevent any kidney rejection and to make sure my kidney lasts for 20 years.I begged for a prednisone free protocol and they definitely do it at my transplant center, but not for me.

[paris]

Sunny, this is why things are so confusing.  My surgeons and team felt no prednisone protocol was the way to go with my high PRA.  There are days that I wonder if we are all just an experiment to them!         I guess we just trust in them (that is a little scary!)  and hope for the best!   I didn't even know until after surgery that the center had gone to a prednisone free program.  After 5 years, I guess I stopped listening to all the chatter at the annual visits!     

edersham, I also had low white count and they changed the cellcept dosage. The number went back to normal.  1/1 prograf---good for you!

SaxOTrix, you are getting some great answers here.  Hope some of it can help you.

[BASSMAN]

My current dosages 3 1/2 months post transplant are:

Prograf 4 mg twice daily
Myfortic 720mg twice daily
Prednisone 7 1/2 mg once a day

I don't think you get a choice.  Most transplant centers have a protocol or tailor the treatment to what they think is best for the patient.  I knew going in mine was going to include Prednisone.  I took it years ago as a treatment for MGN along with Lulkeran.  I haven't experienced too many side effects.  Hunger and slight tremors, both are manageable and I would take that over the way I felt prior to my transplant.

[carla13]

5 months post Tx:

Pred 7.5mg (down from 15 immediately after tx)
Tacrolimus Prograf 8mg twice a day (down from 10mg twice a day)
Myfortic 720 twice a day (up from 360)

Each transplant patient differs wildly in their meds as you've seen here. It's because each patient has their own unique set of problems, (antibodies, diabetes, heart probs... the list goes on...) and unique history. There appears to be no 'standard dose' of immunosuppressant medication, it's tailored purely around the individual.

Probably best to research the effects and benefits of each drug and how you can best stay well after a transplant.

:O) Hope this helps,

[renalpenguin]

Here's my list of anti-rejection meds (I'm on others for bp and anxiety as well as a baby aspirin) I am five months post-transplant.

CellCept 500 mg twice/day
Biggest side effect of this one was bad heartburn and vomitting a few days post-transplant; by the time I left the hospital they had me on Prilosec, which works wonders, and I haven't had heartburn since! I do get sudden naseua sometimes, but since those first days, I haven't actually thrown up. About two weeks post transplant I had diarrehea (sp?) but that's gone now too. So the only side effects that didn't leave around the time I got out of the hospital was that occasional tinge of naseua. My dose was originally 1000 mg twice/day but I was throwing up a lot; about five days post-transplant they brought me to 500 mg and I've been there since.

Prograf- It changes ALL the time, but currently 5 mg twice a day. (I've been anywhere between 3-6 mg twice day, depending on levels in lab).
This is my "favorite"- that is, if you can have a "favorite" medicine!  It caused tremors, but just mild shakiness for me; as if you feel cold, but you don't- my feet do get a cold feeling, but it doesn't bother me. Yes, I did get diabetes  but it's been easy to control and hardly limits my diet all I- I just have to be a little careful and take a little glimiperide (sp?) that helps lower it. Another thing is hair thinning- not enough for anyone to notice because my hair is extremely thick, but I notice (it doesn't bother me).

Prednisone- Actually, it's not bad this time around. The biggest thing that got me (the first time around- see below) was its taste. I actually don't have many side effects- just increased appetite and slight rounding of face. They started me on pulse steroids in the hospital (huge amounts). Now I am on 12.5 mg once a day. This is probably a lot more than most people- I had an awful case of FSGS that caused my kidneys to fail. In order to keep it from coming back, I have to be on extra prednisone.    I'll probably always be ticked about this, because most people at my transplant center don't have to take prednisone. Oh well- it is what it is! 

I also take meds for anxiety and blood pressure.

Like I said, I have FSGS and fought it 2 years before my kidneys failed (in hopes of saving my native kidneys). I was on a bunch of anti-rejection pills as FSGS treatment then, so I have information on these as well. These doses were not for anti-rejection but for disease treatment; still, similar side effects.
Prednisone- at one point 100 mg every other day: I had no side effects at all amazingly but I hated the taste of the pills! ("This time around" with the transplant I stick the pills in empty capsules... no taste! So happy!)
Cyclosporine- Similar to Prograf, but more severe side effects (in me, at least; everyone's different)- these tremors were not fun; sometimes my fingers would freeze up or my entire shoulders would shake. I did get used to it over time. Headaches, slight confusion, and hair thinning were some other things. In my opinion, Prograf is so much better... but some people really hate Prograf, so everybody's different. I don't remember my cyclosporine doses... 125 mg maybe?

Hope this helps... now, 5 months later, most of my side effects are much milder. They are there, but milder.

Good luck! 

[okarol]

Jenna is 3 1/2 years post-transplant and here are her daily meds:

 125 mg Cellcept: morning and evening

 Prograf: 3 mg morning, 2 mg evening

 Bicarbonate: one tab. morning and evening

 Magnesium, Multi-vitamin, Vitamin D and Calcium - 1 in the morning ea.

 Prilosec: 1 in the evening

 Norvasc: 1 in the evening

These are 2 days a week:

 Valcyte: 1 tab. on Sun. and Wed. only

 Bactrim: 1 tab. on Sun. and Wed. only

 No prednisone since the transplant (except one big dose during rejection episode)

[natnnnat]

19 years after transplant, Gregory was on:
10 mg prednisolone, taken in the morning
500mg of cellcept , twice a day (morning and night) making 1g in total.
2x840mg Sodibic
heart meds and some vitamins.
Side effects were mainly some tremors which came and went, and diarrhea on and off.

Now that he is recovering from pneumonia, he is temporarily on higher prenisolone because the pneumonia has been affecting his kidneys.
He was on 100mg a day for awhile, then 40mg,
now he's on 20mg.
Side effects were major tremors, having to hold the cup with two hands to stop it spilling, not being able to keep  his cornflakes on the spoon type tremors.  And more diarrhea.  Other side effects we think are related to the bactrim he is on. 

[rsudock]

Having my transplant for 10 years the dosages are a little hazy but I started out with Prograf I did get diabetes so I changed to Neoral. When I first started taking it diaherrea and nausea, but that passed. I was also taking Cellcept for awhile 8 years but started getting so nausea and bad stomach problems so I stopped taking it. For most of my transplant i was on Neoral 75mg twice a day and Prednisone 5mg twice a day. Throughout the transplant i would hold the prednisone if my gums around my teeth were starting to over grow. I was kinda a rogue when it came to my meds...always staving off the prednsione. Neoral worked like a charm for me, but I was putting myself at risk leaving the kidney to be protected only by Neoral, but not my fault I live in a society consumed by appearance. Damn me and my vanity! 

xo,
R

[kellyt]

I was on Prednisone for 1 1/2 years post transplant.  I was super happy to end that drug, but if he said tomorrow that I needed to go back on it to save my kidney or whatever I'd do it in a heartbeat.  Although I would hope it was a low dose.  I hate Prednisone.

As far as Prograf, I only had slight problems with it when I was on the higher doses.  I started off on 4/4, but am now happily at 2/2.  Occasionally he raises me up to 3/2 if my levels are too low, but again I never had really bad problems with it.  No signs of diabetes and a slight tremor in my thumb when on the higher doses.  I had some freaky hair for a while, as well, but that's all been worked out.