British Liver Trust
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Fluid retention and immunosuppressant drugs

There have been several past postings relating to ascites and oedema flowing from liver disease and particularly cirrhosis but I am inquiring to ascertain whether anyone knows if immunosuppressant drugs could also be another one of the causes for one or both of these conditions or for symptoms that mimic them?.

I recently commenced taking mycophenolate mofetil (2 g daily) as a secondary agent to prednisolone with a view to improving the control of chronic hepatitis (autoimmune) and while it seems to be controlling the liver enzyme readings to normal or near normal parameters I have been experiencing some itching plus fluid retention in legs,ankles and feet as well as in the abdomen( together with some breathlessness especially when bending forward or on increased exertion) ever since I commenced taking this additional medication.

The patient information leaflet enclosed with the medication does indicate some of the common side affects which include inter alia; “difficulty breathing sometimes caused by fluid build up in the area surrounding the lungs” - “water retention” – “itching” and “increase in acidity of blood” etc etc.

When I first started getting the fluid retention my doctor prescribed a fairly potent loop diuretic

and provided I take it on a regular daily basis it controls the problem with the legs ankles and feet which return to their usual matchstick appearance but it has only limited, if any, effect in clearing the fluid from the abdomen hence the breathing difficulties continue on bending forward and upon exertion which– can be quite debilitating.

The ancillary itching that I get is only occasional and seems to respond to anti itch creams etc so I am not too worried about that[

It is clearly something I shall need to discuss with liver specialist but next appointment few weeks away. Meantime it would be helpful to know if anyone can provide some information on this kind of problem or who has taken this type of drug or similar and experienced these kind of effects and if so how were they resolved?

Needless to say it is my hope that if in deed these adverse effects are caused by the drugs rather than the diseased liver , then it may follow that they will diminish and or disappear upon a withdrawal of the culprit drug!

Thank you

4 Replies

Post transplant I was prescribed 2 mg MMF when Tacrolimus (another immunosuppressant) dosage was lowered. Among the symptoms was itching and this went when the dose was returned to 1.5 mg per day. It is probably worth phoning for some advice rather than putting up with it.


That's an unusual(ish) AIH drug, though I understand people who dont tolerate Aza can be switched to it and get along better than with Aza.

It might be worth asking your question on the AIH UK forum

I've found my hepatologist is agreeable to answering questions via email between consults if I am having problems with a drug. Do you have email contact with his secretary?

Are you having any blood tests done between visits while you are on this drug? Sometimes the results of the U&E tests can show up if there is a problem with fluid/electrolyte balance or kidney function getting rid of fluid.


Thanks Mike 8702 and Bolly for your respective responses to my query

Yes I have had and am still having regular blood tests and have also looked at the AIH UK forum. I know there are several contributors to that forum who take Mycophenolate (cellcept) but after search didn't find anything relative to the substance of my query.Have since had communication with specialist and it appears there is a fluid balance problem. Have increased diuretics and stepped down on steroids to see if this will resolve the problem.. If it does I shall let you know.


hello I have just recently commenced Azathiaprine having experienced bad tummy pains with Myclophenolate but on Friday my tummy started to feel tender especially liver area and slightly sswollen. I am on 60mg Furosemide for which I have taken for several years. I have not had this for a long time and wonder if it is the Azathiaprine.


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