I have AIH (2017) & PSC (2005) with Crohn’s disease (1998) and not in a good way this year with the liver. I had been having pain in my URQ for some time and then due to the PSC, had to have my gallbladder removed in 2017 and a few months later I was diagnosed with the crossover of AIH & PSC after the gallbladder was removed I had a lot of relief from the constant pain I was suffering but I’m getting a similar pain again, not anywhere near as bad mind you, and my liver specialists can’t understand why I have this pain. I had a massive flare up of the AIH in December 2018 which until then was well under control with 150mg Azathioprine & 1250mg Ursofalk But I got pleurisy & my consultant thinks being given Doxycycline caused the flare up. Kings then took me off the Azathioprine and it continued to get worse and worse, I’m now on 100mg Azathioprine and 10mg Prednisone and he wants to introduce me into PROGRAF 1mg twice daily to start but apparently it’s so expensive most gps don’t like to prescribe it and it has many side affects. I only have one kidney, pelvic & born like it but wonder if anyone else is currently on or has been on PROGRAF before and could share any experiences you may have had with it, good or bad. Also if anyone else has had this stabbing pain in their liver area too?
I have had a liver transplant, like many other people here and a lot of us are on Tacrolimus. It is a immunosuppressant and for me, stops my body rejecting the donor organ, same for the others. Everyone has varying side effects and we learn to live with them. You have been suggested a fairly low dose, so see how you get on. For myself, I will be taking them for the rest of my life. Good luck and share your experience.
Mark.
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Thanks and I will update here when I start it. Apparently my consultant said he’s having to write a begging letter to my GP to prescribe it as a lot of doctors don’t like to do it as it’s about £160 a month for just 1mg twice daily. Hopefully I will get them soon and I will update on how I get on with them.
All the best for yourself with your conditions.
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Matt,
The GP funding thing is very usual. If you have had a transplant, you need to get the medication from your transplant clinic due to budgets. The regular medication only comes through the GP, so fingers crossed that you will get yours sorted.
Good luck and everyone here will be able to give good advice.
Mark.
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This is what concerns me, I’ve not found anyone who’s on this drug to not of had a transplant. I feel like the only one to be going on it still with my same liver from birth. Obviously it must be ideal for me and my condition, I’m at and have been looked after by Kings College hospital London for a good 10+ years & they’ve always said I’m a very complicated case. I just want to be on a little drugs as possible to stay healthy. Does anyone take any supplements or see a homeopathic doctor for liver care along side traditional medication?
It's also a specialist drug as well as you say- many serious side effects. Hence, some GPs claim they cannot prescribe it. I never got mine from a GP, only from the transplant clinic but not sure if it's the usual case.
I don’t know about the prescription of Prograf ( or it’s once a day big brother Advagraf) in a case like yours but it is a very common immunosuppresseur for transplantees like me. I was on Prograf at first then, once my dose was fairly stable I was moved on to Advagraf.
Its true that it is a pretty strong drug and reading the medication blurb could be cause for nightmares. However my personal experience of it is that it’s ok. Before my transplant I was in a coma with HE, v, v ill etc so I am not 100% sure what is as a result of the HE and what is the pills. Having said that the only thing I can pin down as being due to Advagraf is pain, a bit like having arthritis, in my hands. For a year and a bit it was very bad then gradually decreased but at one time I couldn’t turn a key in the lock or put on my own socks. Now at 22 mths it’s a slight pain. Drs checked all other possibilities and it is known as a side effect.
The other thing I suffer from, being a bit hazy, looking for words etc, which resembles a small stroke I put down to the HE.
I wouldn’t worry about taking Prograf too much, although there are quite a few drugs it is incompatible with (the main one on a daily basis is ibruprofen plus certain treatments for fungal infections such as athletes foot). If they can give you something else then see what that does but quite frankly there are thousands of us living today, taking Prograf or Advagraf, and being kept alive by Pro or Advagraf.
Thank you I guess if it helps that’s great & I’d rather have this than a transplant but if I still suffer pain on these or other side effects maybe transplant is what I need. I do feel that sometimes they just don’t know the answer and it seems a few do suffer from this stabbing pain so there must be something causing it.
Hi Matt. I'm on 3mg Tacrolimus and 100mg Azathioprine daily and I'm post transplant. I can't say that I suffer any side effects from them. I suffer from tiredness but as far as I know this is a symptom of transplant recovery. Pre transplant I used to get stabbing pain in my liver/gallbladder area. Wishing you well. Alf
Hi Alf.can you remind me how many weeks post transplant are you cause I’m at seven weeks and still on eight mil prograf and four five hundred mil of micro.thanks paul
Hi Paul. I'm almost 8 months post transplant. My meds came down gradually. I started out on 10mg Adoport (Tacrolimus) then it was upped to 12mg. About 2 moths post transplant it went down to 6mg. At roughly 4 months post, it went down to 3mg. that's 2mg in the morning and 1mg at night. Along with that, I started out on 75mg Azathioprine and this was upped to 100mg when my Adoport was dropped to 3mg. They keep a close eye on it all through your blood tests. When my dosage dropped to 3mg I'd had a blood test a couple of days before and I received a phone call telling me to drop my dosage to 3mg. Our recoveries are all very different, I expect your dosage may start dropping soon. All the best to you.Alf
As far as the transplant is concerned I am doing absolutely wonderful. I feel so well. I can't remember when my insides last felt this good. My only issues now are through spinal problems which are nothing to do with the transplant.
That’s good to know also, I suffer with tiredness too. I’m having a bilateral hernia operation next week as well as I’m suffering from those on both sides 🤦🏼♂️ I assume since transplant the stabbing pain has stopped?
Yes since transplant my stabbing pain has stopped. I've heard of several people on here still getting some discomforts after transplant. It's generally down to healing from the incision and nerve pain etc that generally subsides with time. I just get a stinging sensation now and then from the scar itself but this is because I forget to moisturise the scar. Years ago after having my appendix out I got the same sensation from that scar, actually it was worse from that smaller scar and it went on for a couple of years and again I would be forgetting to moisturise, LOL
I try to be pretty good with moisturising my scar from the gallbladder removal as that had to be open surgery so have a large(ish) scar there, apparently keeping it moisturised helps it go quicker too. I recently had a black out and smashed my face so now have scars right next to my eye which is a little difficult to moisturise as it goes in my eye too!
So glad to here your feeling great.its a lonely road at times not knowing what your suppose to feel like.so it’s invaluable reading posts like this Alf.thanks paul
Another thing Alf .did you have your gallbladder taken out?ive had mine out on the same op.i was wondering if it was part of having a liver transplant as I know you like myself have had a dbd
Yes, and do you know at the time I had no idea. It was only reading posts from people on here post transplant saying that theirs had been removed. So at my next clinic I asked the surgeon "Do I still have a gallbladder?" The reply went something like "Nope" I said "Oh, I did wonder" he replied "it's no good to you anyway, better off without it!". End of conversation, LOL.
I had mine out at the same time as well. I’m sure they didn’t tell me - but they could have told me anything at all and I wouldn’t have remembered at that, somewhat stressful, but wonderful time, 👍.
Hi Matt - as everyone else who has commented I’m post TP and require Prograf to stop organ rejection - currently on 14mg daily so I think you should be ok on the relatively small does they are suggesting. Yes there are side effects as it is a very power drug but I’m yet to be able to tell what are side effects and what are they effects of the transplant!
I’d follow their advice as Kings did my TP and I always got good advice from them and the team were wonderful.
Hi Peter, that’s reassuring to know ref the dosage. My consultant did say that's the lowest he can put me on and it’s a little like insulin when trying to find the right dose so he’s starting me on that and working it up from there. He said he’s 99% sure I won’t have a transplant this year and wants to keep that as an absolute last minute option as my body is likely to do the same again after transplant. I’ve been under John Devlin at kings for roughly 10+ years now and they’ve always been pretty good, apart from the fact the last few years they do seem more and more stretched.
Before you had your gallbladder out did they do a scan (it has a name but I can't remember it) to make sure that there weren't any stones in the tube leaving the gallbladder (sorry, I can't remember the name of the tube... Bloody memory issues) I had it shortly before my surgery and was told not to eat anything fatty as it could cause the stones to empty into the "tube" I was fine afterwards and was given a sample pot full of stones. My friend didn't have the scan and stones were left in the tube and she had to have further surgery to remove them as they were causing her severe pain. I hope they can solve the problem soon, it sounds like you have lots of conditions going on.
Hi, yes I had an MRCP & an ERCP (if that’s what you were thinking?) but the bile duct to (or from I can’t remember) the gallbladder was narrowed due to scarring due to my PSC & they couldn’t reach it on the ERCP so had to remove the gallbladder but did confirm there were no stones at all. But that was what caused me a lot of pain, it’s just that I’m still having some now and they don’t know why. I did go jaundice over Christmas with the recent flare up which is unlike me but that seems to have mostly gone now. I wish you well also x
Blimey, reading about your 5, 6, 7 mg etc doses of Tac 2 x daily, I must be really lucky to be only on 0.5mg Tac 2x daily. Have arthritis mostly in my knees and a bit in the shoulders too. My memory is going (maybe age related) and powers of concentration never fully recovered after transplant but I definitely feel blessed.
Peter ditto re memory but sort of feel a little is coming back? - it was crucified by all the HE episodes ☹️. Re concentration also ditto - haven’t been able to touch a book since TP. Most I can manage is the Daily Mail online 😁hahaha😁 and this forum...👍
Hi, I take tacrolimus (prograf) as immunosupression after tx. This is NOT a good medication side-effect wise but a necessity and a far better option for transplant recipients. The list of side effects is long and the main concerns are the kidney function and bone profile so it's crucial to have them checked every time you go for a visit (your consultant should make sure of that). Another thing is the risks of osteoporosis and diabetes. Personally, I experienced occasional migraines (never had migraines before), increased tiredness, bone pains and loose stools at the beginning. I also experience some forgetfulness and loss of focus but this might be due to transplant per se or stress. Small doses like yours should be much better tolerated when it comes to side effects. Also as a good thing- my hair is growing faster Take care!
What dose are you on then? And again another concern of mine, only having one kidney! Is this something any of you would suggest getting a second opinion on? I like the hair growing fast, apart from the more frequent cost of hair cuts, lol! I’d rather than than it fall out. I’ve never suffered from migraines before myself but have been told they can be quite unbearable.
Hi Matt, currently on 1mg twice a day but started on 5mgs a day. I see, yes I'd say definitively stress the one kidney worry. They measure my kidney function every two months to keep an eye on it. I know of ppl who took prograf for transplant reasons and had to change medication cause their kidneys started to fail. Migraines are definitively not fun. When in hospital, they gave me quite strong pain killers so it all was bearable but when I went home they only left me with paracetamol and sometimes I struggled. However, this all went much better with time and decreasing dose so even if you get them, they are more likely to 'fade away' with time.
Just a quick update for you all - I’ve been prescribed the PROGRAF from my gp with no issues at all and I take my first dose this evening. Wish me luck! I start on 1mg twice daily. Any tips on taking it? I’ve been told to watch out for any bodily changes, headaches, diarrhoea etc & just report any changes to the GP.
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I guess if it helps that’s great & I’d rather have this than a transplant but if I still suffer pain on these or other side effects maybe transplant is what I need. I do feel that sometimes they just don’t know the answer and it seems a few do suffer from this stabbing pain so there must be something causing it. 
Take care!
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