Immunosuppressant medication

[Rockefeller20]

hi all.

Currently taking 8miligram daily of tacrolimus and 2 500miligram of microphenolate and now being eighteen months post transplant seem to be getting side effects from them.

One as I’ve previously mentioned “could be” Raynauds, but still need to tested to see if it is my meds as I do and always have worked with vibrating machines.

Another is aching joints, knees in particular but shoulder and hand’s also,I believe it’s a possible side effect as I’ve never had problems before.

So my post really is asking anyone with similar history. I.E liver transplant. And if they still have issues or have they changed meds and the issue went. Thanks, Paul x

[Kristian]

Hi again Rockefeller,

8mg of Tac after 18 months is probably still quite a high dose so I wouldn't be surprised if you are getting some side effects.

Not sure about the white finger, but if you are having problems with your joints be wary of gout. I've developed this as a result of the tacrolimus and it is a known side effect apparently. I also found i was getting some quite bad headaches a lot more often than normal that would take an age to get rid of. They still take an age to get rid of, but after the dose was reduced their frequency lessened.

Are you having any issues with your eyes? I found i was a lot more sensitive to bright lights and my eyesight has certainly deteriorated. But that may just be down to getting older, lol.

[Rockefeller20 in reply to Kristian]

Hi there Kristian

I’m fifty and consider myself reasonably fit, in fact probably fitter post transplant than before I was ill even.

I’ve never experienced inflammation of my joints before ever. Maybe it might be age however we all know that side effects are par the course when taking pharmaceuticals.

I’ll make sure I speak to my consultant when this “Covid19” is done with and I’m able to see them face to face.

Regarding my eyes they’re not light sensitive however my eyesight has dramatically gotten worse post transplant.

I was told or maybe read that eyesight deteriorates with cirrosis so who knows what damage anti rejection medication is doing to us.

Thanks. Paul

[Kristian in reply to Rockefeller20]

Yeah definitely worth mentioning the issue with the joints and the eyesight. The meds are definitely known to affect both so they may look to see if its safe to drop the dose a bit.

Good luck.

[Hidden]

Good morning Rockefeller20,

I am sure our forum members will be along to share their experiences - but can I remind you that no-one is medically qualified to discuss an individuals dosing regime.

May I suggest you contact your transplant team and explain your ongoing symptoms and perhaps they can help you by telephone or expedite your next appointment.

Take care,

Trust9

[Rockefeller20 in reply to Hidden]

I’m not and never asked for medical advice.

If you read carefully what I said there wasn’t a mention about asking for advice.

I was asking for other members if they’d experienced anything similar .

I.E inflammation of the joints which is a known side effect from taking anti rejection medication.

I obviously will seek medical advice, But unless you’ve been taking or been through what myself and many others have been through you wouldn’t know.

Many doctors simply go by what they’ve been taught at medical school and I experience many differing opinions from many doctors.

But will seek advice all the same.😬

[PeterP54]

Hi

As the admin has said you should consult your transplant centre.

My Tacrolimus is only 0.5mg 2x daily but then I am 14 years post TX. Don't take any other immunosuppressants. Originally was on Tac, Azathioprine and at various times have been on Prednisolone too.

I have aching knees but this has been put down to arthritis and also now have cataracts but these may both be age related (now 66). Certainly the more I walk, the more my knees ache. The cataracts have come on in the last two years but the knees have been aching for longer.

Good luck.

[Isabelle2]

Hi

I had terrible pains in my hands and shoulders. The pain was such at times that I couldn’t put my own socks on or turn a key in the lock. I am now down to 4 of tac and 2 x 360 of myfortic.

The pain is almost gone but I still have stiffness in fingers. I’m just over 3 yrs post transplant. I was sure it was the meds and had read so on leaflet. Specialist wasn’t that receptive to my complaints as I reckon it’s v difficult to find other treatments as good for the liver as tac.

I believe also that the brain slowly gets used to pain and it does dull down in some people after a few years.

Here’s hoping!

All the best

Izzy

[Rockefeller20 in reply to Isabelle2]

Hi Izzy

We’ve all been through so much over the years suffering with pain and discomfort so yes it does become the Norm

And I’ve also found that many consultants unless you’re body isn’t rejecting the liver and working fine can be a bit dismissive of any other ailments you may have post transplant.

[1football]

Hi

I have aching joints but I do work full time and on my feet all day, am on 2ml tac twice a day but no other in fact they took me off microphenolate after 6 months I guess we all react differently to what was a massive operation,your issues seem to be worse so like you’ve said seek advice from your team.

I should mention that I take cabapentin for nerve pain and usually paracetamol every 6 hours all prescribed by consultant

Wishing you all the best

Huw