Mycophenolate

[artists]

I have just started on mycophenolate . I am having some awful side effects . Severe diarrhoea and stomach pains . I can eat very ill . I have only been on them five days . I feel l should give them a go as I can’t take steroids . However l can’t continue like this , so does anyone think that the side effects might ease or do l give up immediately ? Many thanks

[vivdunstan Volunteer]

I've been on Mycophenolate Mofetil since 2006 or so, and expect to be on it for life. Generally based on experiences of others I've seen in the Vasculitis UK Facebook group side effects ease after the first few weeks. However this isn't always the case. I needed a permanent prescription of Loperamide (taken at least daily in my case) to cope with the diarrhoea when I added this to my other cocktail (I was on up to 5 immunosuppressive drugs simultaneously). Loperamide is the generic form of Immodium. I also needed to add twice daily prescribed anti nausea pill Metoclopramide. All the drugs make me hurl, and I was on a mega combo.

So yes, give it another week or two. Although don't be afraid to seek medical help sooner if you feel too uncomfortable. But if you have continuing problems there are additional drugs that could be prescribed to help with tummy problems, that might mean you could stay on it longer term. Another option is to switch drugs, but some people like me get bad side effects from most stuff!

Best wishes.

[May7]

I would speak to your rheumatologist as soon as possible. Don't just carry on.

We can react to drugs differently, for instance I was allergic to azathioprine which many others aren't, and put onto Mycophenolate which my body has been happy with for several years.

If your body isn't happy with it, then maybe you need a different medication.

[artists in reply to May7]

Thank you . I have managed ice cream today , so I’m going to give it another few days . If there is no improvement l think l shall have to come of them . It is frustrating.

[Roughley17]

Hi, I started on Mycophenolate in Feb. I struggled with some aches and pains, hot sweats, strange heart sensations, tiredness and insomnia for a few weeks as I gradually increased the dosage. I persevered as I had already tried Azathioprine to which I had a terrible adverse reaction, so I wanted to persist with the Mycophenolate. Gradually I started to feel better and the side effects eased. I am now feeling much better. My consultant said it could take up to three months for the full benefits to be felt and he was right. Not every medication suits everyone though and I couldn't tolerate Azathioprine but for others it is better. Contact your rheumatology team, if you are concerned.

[artists in reply to Roughley17]

I have an appointment with rheumatologist in three weeks ,so l have decided to keep on with the medication until then . I do feel the cure is worse then the illness at the moment. Maybe things will improve . Thank you for your input.

[michichgo]

MPA 2013.

Now THIS is a post I can relate to.

FYI, there are two mycophenolate medications:Mycophenolate Mofetil (CellCept) and Mycophenolate Sodium (Myfortic)

I was prescribed Myco Mofetil and didn't last 4 weeks. Side effects were severe.

I was then placed on Myco Sodium and have been on it for about four years. No steroids. No flairs. (Steroids are given as a last resort for me, due to bone deterioration/disease from Prednisone.)

Contact your doctor, as alternatives are available. God speed, vasci friend.

[artists in reply to michichgo]

I am on Mycophenolate Mofetil . I didn’t realise that there was an alternative. That is encouraging. I can’t take steroids either, although l do get rituximab which is very successful. Unfortunately this infusion does not last the full six months . If l can last another three weeks maybe l can change medication . Many thanks .

[vivdunstan Volunteer in reply to artists]

I think the other person is in the US. I'm not sure how widely available the alternative is here in the UK and on the NHS.

[EdieBD]

Did your doctor titrate the dosage? It seems you might need more time to adjust to before you get to your therapeautic level. Be aware you should not ever split your pills. All the best to you.

[artists in reply to EdieBD]

I take 500 morning and evening . I got the impression that this was a small dose . I did think about just taking the morning dose , but will wait to speak to consultant . I want this drug to work , any help with pain is a wonderful thing. Thank you for your advice .

[vivdunstan Volunteer in reply to artists]

A normal dose would be closer to 2g a day, so 2 x 1g. Or sometimes higher. So you are still working up. All the best.

[artists in reply to vivdunstan]

Thank you

[artists in reply to EdieBD]

Thank you

[ehughes]

I have been on mycophenelate since Feb 2011,500mg,together with prednisolone 3mg,but I do have to take Loperamide (immodiun)as well due to diarrhea.hope this helps you

[artists in reply to ehughes]

Thank you l don’t really want to take extra medication to deal with side effects of other medication. It is all very difficult isn’t it.

[2013mayo]

Hi. My husband is on this drug for myasthenia gravis, it gives him very bad diarrhoea too.

I was put on this a while ago and stopped taking it as I developed a bad rash.

Hope you get it sorted.

Xx

[artists in reply to 2013mayo]

Thank you I am starting to improve , the side effects have subsided a little . I’m going to give it a little longer I think .

[2534]

I had 3 grams a day for just over 1 year. I didnt feel wonderful on them but nothing to put a finger on. But the Nerve Conduction studies carried out before and after this period showed a significant deterioration so it was clear that the MM wasnt achieving anything at all.