Mycophenolate mophetil

[boome]

Hello! Iam a scleroderma patient and I started mycophenolate 2 days ago. Is it possible that it causes abdominal pain? Of course it is very soon to talk side effects, but I would like to know if anyone had this experience. Also I find it hard to swallow the pills. Had anyone had the sirop instead ?

I have read other posts here that show it is a generally well tolerated medicine, but my doctor didn’t tell me anything about the risks involved, can you tell me what to expect? Or maybe reassure me a little? Iam nervous about taking this drug.

Thank you all

[LucyJean]

Hi there, I am putting a link that takes you to the Arthritis Research Uk site with some information on Mycophenolate which I hope is helpful. Your Dr should have given you an information leaflet and talked you through the reasons for taking this and the potential side effects. Here in Norfolk you wouldn't have been started on the drug unless you had had an appointment with a Nurse Practitioner and preliminary blood tests, so I am not impressed. Rant over

arthritisresearchuk.org/art...

Stomach pain is very likely related to the Mycophenolate (especially if this is a new symptom for you) sometimes they settle down given a week, but if it is a real issue then you may need to inform your Dr and stop the drug.

I believe that there is a liquid form if you can't swallow...and possibly different sizes of tablet. Talk to your pharmacy and see what they can do. You may need the hospital to prescribe a liquid form rather than your GP practice.

You will need regular blood tests while you are taking this drug. Ideally fortnightly to start with and then monthly, and eventually three monthly if things are stable.

I hope that helps

Lucy xxxx

p.s. I just checked and there is an oral suspension version of the drug

[boome in reply to LucyJean]

Thank you for your help . I told the doctor about the liquid form of cell cept,but he told me that he doesn’t know how it is absorbed(?) and that I should continue with the pills. I have tried to retake the pills because I quit after 4 days the first time. Now on day 3 my belly aches again, feels like period pain...

[LucyJean in reply to boome]

Hi there, the liquid form is absorbed in just the same way as the tablets. It is an oral suspension of what is packed into tablet form. It will help you if you have difficulty with swallowing tablets, but it will not make any difference to your guts reaction to the drug. If you are having severe gut pain then you need to contact your consultant and tell him and see what he suggests. Don't be taking it if the side effects are too great.

You may need to start with a very low dose and build up, or this just might not be the immunosuppressant for you. There are a number of others which have the same or similar effect.

Lxxx

[MEW53]

Hi boome,

I’ve been on mycophenolate for 3 years, I think I had some pain in the beginning, it takes about 3 months in my experience to get used to the drugs and see an improvement in the body.

I started on pills but couldn’t swallow them, I been taking the suspension for nearly 3 years, it is more expensive than the pills, but has been great for me, which is why the want to prescribe the pills.

Once you start on a particular brand stay with it, cos there can be slight differences.

I take the Roche Cellcept/ mycophenolate suspension.

You have to be monitored regularly, I have monthly bloods and urine checks, I have a leaflet from Arthritis Research which was given to me by the rheumatologist’s nurse who explained all about the side effects, worth exploring their website like LucyJean suggests.

If you have any problems you should contact your doctor or specialist.

You have to avoid the sun and use a high factor suncream while on this drug.

Hope this helps, good luck.

[boome in reply to MEW53]

Thank you for the advice