Prograf Tacrolimus

[sporti]

Hi

Is anyone having problems with this anti rejection drug please. I was just wondering if what I'm experiencing is common. Describing my symptoms to Transplant Drs they have named Prograf as the problem. It's making me have walking difficulties as I'm very spaced out, shaky and doddery and woozy in the head and weakness. Trying to walk alone is impossible. I have fallen twice. Not hurt myself I was caught both times. As I'm only on week 6 they don't want to reduce it as the risk of rejection is too great and my Prograf level is only 10.5. They have done an antibodies test so I am hoping this will be negative so maybe they will think again but if it's positive then no way will they reduce it. I'm on 6mg twice a day. Week 6 post transplant. They do keep telling me that up to 12 weeks it can be very difficult.

[Grey]

Sheila yes I too are having untold problems with drug side effects. If you look through the side effects listed and by that I mean the more common side effects you will probably find that more than one drug you are on have side effects that will cause your symptom. here is a list of more common side effects of Prograf.....More common

•Abdominal or stomach pain
•abnormal dreams
•agitation
•chills
•confusion
•convulsions (seizures)
•diarrhea
•dizziness
•fever and sore throat
•flu-like symptoms
•frequent urination
•headache
•itching
•loss of appetite
•loss of energy or weakness
•mental depression
•muscle trembling or twitching
•nausea
•pale skin
•seeing or hearing things that are not there
•shortness of breath
•skin rash
•swelling of the feet or lower legs
•tingling
•trembling and shaking of the hands
•trouble sleeping
•unusual bleeding or bruising
•unusual tiredness or weakness
•vomiting

I started on 4 mg twice a day and are now down to 1.5 mg twice a day which is much better. They are still monitoring my bloods and my even reduce it further. My main side effect is agitation third one down and when I look at the other drugs many of which also have that as a recognised side effect little wonder I have the problem. This agitation is very bad keeping me awake half the night every night, I get so agitated that I simply cannot keep still, it's a curse. My attitude to this is that I hope that over time my body will adapt to these new drugs and things will settle down, but who knows. By the way I have also found that while 5 weeks ago I was on 4 or 5 blood pressure pills now take none and my blood pressure is very low, to the point that sometimes get dizzy just standing up. Again I am not going to panic and hope things settle down in time. Always remember, this is still way better that hooking up every night for 8 hours and all that. Hope you get through this phase relatively easily and look forward to hearing you say what a pleasure it is to have that new kidney and your life is back to normal. I read about people who have had 20 or 30 years of good service from a transplanted kidney, watch out gal may still be knocking around at 105 !

[Grey]

PS The second symptom "abnormal dreams" have proven to be way better than telly or the movies so cannot complain about that !

[jooles]

Heck! I'm still on 10mg! Very shakey hands!
Jooles

[sporti]

Wow Grey I wish I was on that low! That's quick to go down that low. What are your Prograf levels in blood? You must have a very good match. Yes I've got 5 of the side effects all of which affect my walking oh except for the confusion! Interesting about your BP as that's happened to me a couple,of weeks ago. It just plunged to 95/58 so they're tapering me off but it's up and down like a yoyo. Might not be helping the situation. They say it's when the new kidney starts to take over the BP. Yes agitation is a problem but I sleep as normal. Hope that improves for you. Hehehe 105!! Don't get me wrong I am eternally grateful for a kidney and all the help I have received here but as they say the first 8 weeks are not nice. Jooles is that 10mg twice a day? I have to take Prograf twice a day so together I'm on 12mg. Shaky hands I know what you mean!

[Grey]

To be sure I get told almost every visit but never actually hear, remember dear I am a man and if you are married or ever have been you will understand! I will however write it down on my next weekly visit and let you know. The lower the drugs the better for me. I also take Cellcept which as far as I know is also an antirejection drug of sorts. I asked last visit why they were not reducing that at all and they said they would monitor that and see what they can do. So 1.5 mg prograf twice a day and 1 g of cellcept. Which as it stands today is 4 x 250 mg pills twice a day. Now just for the record here is my complete list

Alfacalcidol 250 nano grams twice a week
Asprin 75 mg in the morning
Bisoprolol 2.5 mg twice a day (to regulate my heart beat as I have AF)
Cellcept as discussed
Co-codamol (to feed my addiction)
Co-Trimoxazole (was not sure what this is so "It is a mixture of two drugs: trimethoprim and sulfamethoxazole, and is sometimes known as an antibiotic. "
Lansoprazole (again not sure so "It is a member of a class of drugs called the proton pump inhibitors, sometimes known as PPIs. It is used to reduce the amount of acid produced in the stomach."
Prograf as discussed
Sodium Bicarb ( ditto " It is a chemical compound (sodium hydrogen carbonate or NaHCO3), and is sometimes known as an antacid, bicarb, bicarbonate of soda or baking soda. "

And that my dears is that !

[sporti]

Wow impressive. Much less than mine. I will send you my list when I'm back from clinic. I'm also on cellcept 4 a day.

[Grey]

Less than yours, I thought I was taking to much already !

[sporti]

Lol wait till you see my list!

[sporti]

Ok here we go

Prograf 6mg twice a day
Prednisone 15 mg once day
Cellcept 1000 mg 2 tabs twice a day
Bactrim one a day antibiotic
Nexium 40mg once a day antacid
Valcyte 450mg once a day (anti viral)
Neutrophos 250mg twice daily (low phosphorous)
Mag-ox 400mg twice a day (low magnesium)
Sodium Bicarbonate 2 tabs twice a day
Zetia 10mg daily for cholesterol
Januvia 100mg plus insulin jab
Atenolol 25mg

[SKM23435]

I'm quite surprised in the difference between different units (or maybe it us patients that are different.)

I'm now 6 1/2 weeks post transplant.
For antirejection I take:
Cellcept 500mg twice a day (reduced from 1000mg twice a day at 4 weeks)
Tacrolimus 2.5 mg twice a day (last serum level 10.2)
Prednisolone 5mg daily (I was on 20mg daily and have reduced by 5mg every 2 weeks).

I'm classed as a high immunological risk. Although my kidney was a perfect match I had antibodies.

Don't know if it's true but I get the impression from what's been said that each unit has its own policy. I'm rather surprised at the lack of national guidelines. But as I said at the beginning maybe it's us that are different.

[sporti]

Hi SKM23435

Thanks for the info. Very interesting. I have antibodies as well but they were destroyed. I'm waiting for results to see if they are back at the moment. So I'm definitely different from Grey for example but you sound very similar. I'm in the USA. I see your serum level is 10.2 only having 2.5 twice a day. I'm on 6 mg twice a day and have the same serum level as you so this is where we are all different unfortunately for me. So if I was on 2.5 twice a day it wouldn't do its job I'm presuming. Thanks for the info. Really helps to understand. My transplant was 12 May so very close!

[jooles]

O.k I'm feeling left out! here's my list (TX was 19th March - now Week 14)

Tacro (anti-rejection) 10mg
Prednisolone (anti-rejection)10mg
MMF 1000mg Anti-rejection (5oomg x 2)
Ranitidine (to prevernt stomach ulcers) 300mg (150 x 2 )
Co-Trimoxazole (to prevent chest infections) 480 mg
Amlodipine (added a few weeks ago for raised BP) 5mg
Bisoprolol (for BP) 5mg
Valganciclovir (for potential CMV virus)

I was taken off MMF for a few weeks as my white blood count plummeted; they are now re-introducing it slowly and want to increase dose. My Tacro dose is high for my weight apparently! Have been told I will stop the Co-trimoxazole on 19th Sept - after 6 months. I've also been told it's ok to travel abroad if I'm sensible!!!

Jooles

[Grey]

I have double checked and the drug "cellcept" should be taken "Take oral CellCept on an empty stomach, at least 1 hour before or 2 hours after a meal." to facilitate good absorption.

It seems that Prograf can be taken with food as all the other drugs.

[DeanH]

Whilst in hospital after my transplants the nurses gave me all my tablets inc MMF with breakfast, lunch and dinner without anything about having to have it on an empty stomach, guess different hospitals/units have different ways of doing things