Some nitty gritty specific questions

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Some nitty gritty specific questions

Postby nycpetit » Tue Jun 08, 2004 2:35 pm I wanna know :) EXACTLY every single med and dose that each of you take post-transplant...what your dosing times are...and how much of each thing you take.....

I was told I would be taking my meds once in the am, and once in the pm and then some at two pm...i want to know where you guys that are post-transplant are in your medications.....what you take aside from the anti-rejection meds as well....

and one thing specifically also...was your pred dose split am/pm also? I have been taking pred already for 1.5 years..and it was always all am....which at least allowed me to sleep a bit at night....looks like post-trans until the dose it tapered that won't happen..they said 15mg in the am and 15mg in the pm for the first month..that nighttime dose will keep me awake for hours...I've been there and tried that....

but please, i want to know what to expect ..with ALL medications...I know there are others that you continue taking aside from the anti-rejection meds..and I am hoping against hope that my Lipitor might go down...while my liver function is fine..the muscle pain has become absolutely unbearable..without kidney disease I had no high cholestrol so I am hoping to get that one out of the picture post-transplant...are any of you still taking it????

specifics please...
thanks in advance
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post transplant immunosuppressants

Postby SteveUK » Tue Jun 08, 2004 3:18 pm

Hi there

I have been transplanted now for a year. Initially my doses were very high, obviously to stop any rejection whilst the new kidney is still "new", if you know what I mean. Dosages depend more on your weight and height, but I'll happily provide you with what I was on then and what I am on now.

500mg x twice a day Neoral(Cyclosporin) (8am/8pm)
Prednisolone 25mg (8am)
Mycophenolate Mofetil (CellCept) 500mg x 4 a day (8am/12pm/8pm/10pm)

I also had some other immunosuppressant, that was given intravenously, but I can't remember the name. These are, as I said dependant on weight. Like all drugs, the side effects can vary between patients. Take a look at the link below it should provide you with a rough guide as to what to expect from not just these drugs, but others too.

I now take as follows:-

75mg x 2 Neoral (8am/8pm)
10mg Prednisolone (8am)
500mg x 4 Mycophenolate Mofetil (8am/12pm/8pm/10pm)

It has taken me a year to get to those doses, as I have had many scares (not rejection) over the last year, and the Nephs have been a little wary of my situation, and I still attend clinic every 2 weeks at the moment.

As for side effects now, I only get excess hair growth, tremor in my hands, and I get pains down my left leg from time to time. I still get tired, but it's a damn sight better than haemodialysis and I'm grateful for every day I get.

Hope this helps.
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Postby nycpetit » Tue Jun 08, 2004 3:37 pm

how people are treated differently...I was told 15mg twice a day..and i only weigh less than 90 pounds..and it SUCKS to have it in the morning and evening..I will never, ever sleep..I know this from past experience....

as for the Neoral..yea, that is my fear, I had terrible excess hair growth already from the i can't even imagine how bad this will be with the Neoral....
hopefully my doses will be manageable and lower than that eventually due to the fact that I am super teeny

thanks for the you still take cholesterol medication?
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Postby Anne in Va » Tue Jun 08, 2004 6:05 pm


At transplant I was treated with,
Thymoglobulin [ IV 5 or 6 days - I forget]
Prednisone, IV then pills.Off Pred in 10 days
Prograf, 3mg twice a day
Cellcept, 1,000mg twice a day

Six months out now take,
Prograf, 1.5mg twice a day - I am very sensitive to prograf
and only need this amount to maintain correct trough
Cellcept, 750mg twice a day. My cell count was low so
dosage was reduced.

In Hospital I was given meds at 10am and 10pm. I now take them at 8am and 8pm.I was told I could take them morning and evening, twelve hours apart, at times which suited me.

I still take cholesterol medicine only at half the dosage. I take this drug at bedtime. Like you, I did not have problems until I went on dialysis. I seem to remember that one of my meds can cause this but cannot remember which one. Also I believe the question of protecting the heart factors in.

Cellcept can be given in four doses for those who have intestinal distress.

I was told that 1,000mg twice a day is the usual starting dose of cellcept, except for African Americans who seem to need a higher initial dose.

Prograf is initially dosed according to weight and what they estimate will be the optium dose to provide the blood trough level needed. This drug seemingly is one which can change dosage frequently.

Remember there will be many changes and adjustments to your meds the first few months.

Hope this is of some help.

Anne in Va
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All relative..

Postby JMan » Tue Jun 08, 2004 9:28 pm

Hey Nat..

JMan here and I remember vividly your first post on KPG (the old board) a while back.

This is quite an anecdotal research project of a thread.

I started post transplant on MMF, Pred and Azathioprine

plus the usual mix of anti cholesterol (statins) and anti bacterials immediatly post transplant. I have a lymphocele from the MMF (a known possible side effect) and various other crap including not reacting well to MMF (my white count dissapeared down off the scale.)

So my MMF was changed to Neoral.
I stopped the statins as they were giving me side effects (severe back pain)

The antibacterials (lozenges/ nose cream etc) etc are usually stopped a few weeks/1 month after transplant

I'm now 3 years post transplant with a stable but far from idea creatinine of 400 - 450

So I am now on Neoral 100 morning and evening, pred 10 mg, azathiaprine 50mg, frusimide 40 mg, Ramipril 10mg , Amlodipine 5mg, Asprin 75mg, alphacalcidol 0.25µg, and calcichew 500 2 with food.

I'm also on EPO (as NeoRecormon RecoPen) 5000IU once a week.

I take everything at breakfast except for the second dose of neoral which I take at suppertime, and Calcichew with each meal.

It'll be an interesting thread.. As you can't easily compare protocols between units. and esp not across countries where there may be harsher monetary restrictions on newer drugs within the health system.

Hope this helps..
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Postby Pam » Wed Jun 09, 2004 6:54 pm

When I got my second transplant in 1977, the only anti-rejection meds available were the standard Prednisone and Imuran which I am on to this day, but of course at much lower doses. I believe I took 60 mgs of Pred at the beginning and now take only 12 and a half every other day. I am a quite small person...4 ft 8 in and I weighed only 86 lbs at the time of my tx (115 now) and the dosage is determined by weight. I took pred three times a day in the beginning but now only in the a.m.
I am on 100 mgs of Imuran daily and also Lipitor-I know what you mean by the muscle aches-they are awful! I asked my doc if the Lipitor could be causing it and he said no-(hmmm-shows you how much the docs keep up with things like that!) :? I am on 20 mgs a day, but I also got my HDL quite high by eating a lot of fruits and vegetables, so perhaps I will be on a lower dose soon...I am also on Digoxin (for a congenital heart defect), Effexor for depression and Dilantin for a seizure disorder. I also take Phenergan for headaches.
If you are not getting sleep because of the pred, maybe ask your doc for something to help you in the meantime. I remember having awful panic attacks from the pred and was on Xanax for awhile, but not everyone experiences them. I can't remember having a lot of problems sleeping, but it was so long ago and I was so much younger then! 8)
I hope that everything goes well for you-anti-rejection medications are such an exact science and so different for everyone-everybody's experiences are different but hopefully we can help by telling you of ours-THINGS DO GET BETTER! :)
Best Wishes-
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transplant meds

Postby Gil » Wed Jun 09, 2004 9:00 pm

I am 34 months post txp :D after 17 years on hemo :(

I started with medrol 30 mg AM (4 mg medrol = 5 mg prednisone).
After about 1.5 years it was out. :D

I strated with 500 mg cellcept am-pm, up to 1000 am-pm, and down to 500 3 times a day.

I started with prograf 1-2 mg am-pm, up to 6-6 and after 5 month it was replaced by rapamune, 3mg am, up to 5 mg - got triglycerides over 1000 :( (200 is normal) and down to 2 mg.
With this dose of rapamune my hair grows normally. :)

For lipids it is 10 mg lipitor, 54 mg tri-cor, 10 mg zetia. These are all pm.
My last cholesterol was 180 and triglycerides 216. Ldl and Hdl both okay.
I too had severe muscle pain with higher dose of lipitor :(

Fortunatelly no high BP, but my doc advised me to take 2.5 mg prinivil (ACE inhibitor). Good for the kidney.

I also take 20 mEq potassium-chloride (down from 3x20) , 1000 mg calcium am-pm, 0.5 mcg rocaltrol, 2 mg folic acid, 20 mg lasix, 2.5 mg Zaroxolyn every other day, and get 100 mcg aranesp shot (EPO) once a month.

And bear with me if I forgot something :?
Oh, 81 mg aspirin every other day. :idea:

My creatinine is stable for 2 years at 1.6-1.7 (140-150).
During the first year I had to pee at night every hour, the 2nd year every 2 hours, now it is 3 hours.
Maybe after 8 years I'll be able to sleep a full night. :D

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Postby Rik » Thu Jun 10, 2004 8:56 am

Hi Natalie ... hope your OK ...
each and everyone is different with what they are required to take ... plus which hospital and doctor you have makes a difference too ...

I started off with 30mg of Pred the day after my op ... and a whole drugstore full of other stuff ...

6 days later when I left hospital I was on 15 mg of pred and only half the drugstore ...

now one year on ...
in the morning I take:

3mg of prograf (Tacrilimus)
5mg of pred
75mg of asprin

and at night its 2mg of prograf

not quite the cocktail I imagined I would be on for a Tx patient ... I always thought you'd be swallowing tablets morning noon and night ... and some inbetween too!!!!!

the thing I have realised that there is a difference between us here in the UK and you in the US .... and that is that the US tend to be that bit more over cautious with reducing your amounts required ... (must be a medical negligence thing eh!!)

the main thing is that you dont let all this worry you lady ... stress only puts up your blood pressure .... and that will be another tablet or two for you to have to swallow!!!! ;)

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Postby Dionne » Fri Jun 11, 2004 4:04 am

So much has happened in the past 13 weeks post transplant, that I've lost track a bit, but here goes...

Because I had an imcompatible crossmatch tx., I had three plasmapheresis treatments before surgery, and started taking 2,000 mg. of Cell-Cept and 3 mg. of Prograf every day for a week. After surgery, I was increased to 3,000 mg. of Cell-Cept, 10 mg. of Prograf twice daily, and others such as: Solumedrol, Cipro, Diflucan, Dapsone, Valcyte and Mycelex. I also had bi-weekly treatments of Xenapac (another anti-rejection med.)via IV for eight weeks.

Right now, I am taking 1,000 Cell-Cept (g.i. problems on higher dosage...vomiting, etc.) 3 mg. of Prograf - both twice daily. 10 mg. of Prednisone (lowest amt. since tx.), Dapsone (anti-viral/bacterial), and Plaquenil (for SLE). This is the least amount of meds. I've taken in years, my creatinine is 1.3, and I feel great, so I take them all...happily I might add. :)
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Postby debbie » Fri Jun 11, 2004 2:56 pm

Hope you don't mind me asking but ny neph is pushing me towards plasmapheresis... did you have treatment before and after transplant ot just before... :?:
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Postby Dionne » Fri Jun 11, 2004 9:09 pm

I don't mind you asking at all. I had plasmapheresis three times before and three times after transplant. It was a painless, although boring procedure... alot like dialysis. They used the same catheter that was used for dialysis for access. Each treatment lasted about 2-4 hrs. The nurse/tech. keys in your weight and that determines the length of each treatment.

I was so nervous before starting treatment, but it was rather uneventful. The nurses at the unit were very friendly, and even offered me drinks, snacks and blankets. (Not at all like dialysis!) :wink:

Do you mind if I ask why your neph wants you to have it done?
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