More on Prograf

I have been reading Prograf experiences in recent days and it reminded me to alert you to my recent experience.

I had a transplant in December 2011 and was on a reducing dose of all of my medications in the first 12-18 months after transplant. These stabilised in summer 2013 at 500mg x 2 of MMF and 1mg AM and .5mg PM of Prograf. About 4 months ago I read an article about a new drug that had been produced that was a 24 hour dose of immunosuppressant rather than twice a day. I contacted my hospital to see if they were going to adopt this and was told that they had no plans to do so. I then received at email suggesting that I could look to reduce medication so I am now on .5mg of prograf (am and pm) and 1 x 500mg of MMF. This reduction was achieved in two stages with blood tests after 2 weeks. As yet, they have not suggested further revision after my second blood test (Wednesday this week - after 4 weeks on reduced dose).

Two questions of the Prograf taking community:

what is a typical dose for you (Program and MMF)

have you discussed reducing the doses with your team?

I have read of patients who can manage without immunosuppressants and given that they are powerful drugs, it is an attractive proposition.

I would be interested to hear your thoughts and experiences.

Mike

[RodeoJoe]

I'm 6 months post transplant and I'm on 1mg of program twice a day and 2mg of sirolomous once a day. It was a bit erratic for a few months after the transplant but now the quantities of drugs seem to have settled.

I'd love to know what might happen without the drugs but obviously not stupid enough to try

I'm a guinea pig in a research trial, it involves t-cell therapy, and the end game of it is to be able to come off the immunosuppressant's.

[carmik]

Hi Mike 8702

I am sure you had your transplant in Kings. Am I right?. Thought I recognised you in clinic from your photo here. Mike, my hubby, had his transplant there in Dec 11 as well.

He is on Advagraf which is the one a day Prograf ,now down to 5mg once a day.

If you were in Kings it seems odd that you are both on different timed meds. I often wonder if they run some sort of research (experiment), to see how different patients react without us knowing. Mike's TP was 29th Dec 11 therefore I would suspect you were earlier in the month.

How have you been since TP?. Mike has has loads and loads of issues. He had incisional hernias. Has had many bouts of Sepsis, Joint problems,skin problems, capilliaritits (infection of small veins) Billiary stricture and now diagnosed with a joint problem know as either Avascular Necrosis or Osteonecrosis which causes joint bones to lose blood supply and eventually die. Have you been ok since?. The thing is when they removed his liver he had over ten tumours which were liver cancer and had they known he would not have been eligible for a TP. He also had a Parkinsonions form of HE before transplant and he is still left with cognitive and memory issues.So we should thank our lucky stars that he is still here!

[Hidden in reply to carmik]

Hi there, No not at Kings but at St James's in Leeds. It was Advagraf that I read about and clearly Leeds are not planning prescribing that.

On your other issue, I am very fortunate in that I did not have evident symptoms when my tumour was diagnosed (resulting from other things genetic haemochromatosis). I think that is why I have had a relatively easy ride post op and apart from a couple of episodes of sudden weight loss (down to medication changes), I have been symptom free. Your husband's experiences sound bad. I hope they can get hold of these symptoms and give you all a better quality of life.

Best wishes to you both.

[carmik]

Thanks for that. You must have a double in Kings! Mike's problems have arisen due to genetic Alpha 1 Antitrypsin Deficiency, which is a rarely diagnosed defect and I don't think they know enough about it as regards to post transplant. Most of the research is done for the lung side of the disease, ( emphysaemia)

[Brummi]

Hi, This post made interesting reading. A 24 hour supressant sounds a good idea. I take 5mg a day, however Inow have one of the siide effects, Skin cancer..

[mrsmerlin in reply to Brummi]

Oh Brummi, my heart sank when I read your post. You must have been Atilla the Hun in a past life, but even then you have more than paid any karmic debt.

I truly hope you can put this behind you quickly.

Unless we have it wrong and you are actually tipping your cap at one of the nurses..?

Take care x

[Brummi in reply to mrsmerlin]

Hi mrsmerlin, l will come out on top. As for the nurses I love them all. Just maybe it's the hospital food I like.

[RodeoJoe in reply to Brummi]

I'm really sorry to hear that. Do you mind if I ask how long you've been taking prograf? Did you keep out of the sun etc.??? It's my first summer taking prograf, I've bought all the factor 50 sun creams but normally forget to put it on.

[Hidden in reply to RodeoJoe]

Me too Brummi, in more ways than one. I have had two basal cell carcinomas removed since my transplant, which is among the reasons I am keen to reduce immunosuppressive drugs. I have read that most skin damage in people of my generation will stem from damage in childhood. I can remember being out in the sun as a child with s bit of olive oil smeared on. Best wishes for a successful outcome of treatment.

[Brummi in reply to RodeoJoe]

Hi Rodeojoe, I have been taking Prograf dince June 2013, to be honest for 25 years I was working at sea before that and spent a lot of time in the tropics so maybe the blame is mot all down to the Prograf. It seems to be under control so I am not too concerned yet. I now always wear a hat and 50+ sunscreen, just be safe...

[RodeoJoe in reply to Brummi]

Thanks Brummi, being a child in the 70's and 80's meant I burnt to a crisp every summer. I remember having sunburn was part of going abroad. So hat and sun cream from now on, and hope the damage isn't already done. Hope it all goes well for yourself.

[monmex]

I take 500 mg of MMF x 2 every 12 hours and 3 mg AM and 2 mg PM of Prograf. The transplant was on April 1. Until now I do not have any complications.