Mycophenolate advice: I started taking... - Scleroderma & Ray...

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Mycophenolate advice

Jen3131
Jen3131

I started taking Mycophenolate 4 weeks ago with a plan that after 4 weeks, I double the dose. I had read that I needed to avoid taking it with Lanzoprazole so I take that in the morning and the mycophenolate at night. I also take Fluoxetine in the morning. Fluoxetine made me quite nauseous and mycophenolate has also cause stomach upsets. So I am trying to work out when to take my second mycophenolate tablet - if I take 2 together, will that have a detrimental impact? I just wondered how others managed their meds to avoid or lessen the side effects please as I really want this medication to work. Thanks.

14 Replies
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Jen3131,

I take Mycophenolate twice a day and also lansoprazole as well as a few other drugs. As I get up early everyday I take my lansoprazole tablet at 0600 am roughly and then take Mycophenolate around 0730/0800 and then 12 hours later to space the drugs out. Up till now this hasn’t caused me any problems, I always like to have a biscuit when I take the Mycophenolate so I’m not taking it on an empty stomach. I’ve been using this routine for over 3 years now and it seems to work for me. Mycophenolate has been a great help to me.

Jen3131
Jen3131
in reply to MEW53

Thank you - that sounds like a good plan. I will try it tomorrow 🤞

Barnclown
Barnclown
in reply to MEW53

Good news mew: what daily myco dose are you on?

MEW53
MEW53
in reply to Barnclown

Barnclown,

I presume you meant diet not die (predictive text) in your reply.

I have a very limited diet as I have severe swallowing problems. I live on eggs, Cod,haddock, tinned tuna, chicken breast when very soft and cut up into very small pieces. Lots of bought smoothies to get fruit into the diet and soup, I buy the readymade soup veg packs and add a stock cube and water. When I was first diagnosed with scleroderma 5 years ago I was on a liquid diet but I have introduced more items gradually. I’m unable to cut up vegetables cos my hands are not great so I have to use food already prepared.

One thing I miss is the occasional fillet steak, but it’s too fibrous for me to chew and swallow.

I take 1 gram (5mls) twice a day, in liquid form cos I couldn’t swallow the pills. This has been a magic drug for me.

Barnclown
Barnclown
in reply to MEW53

SORRY: typos are me!

Thanks, I meant ‘dose’ ....so your last para especially hits the spot. Myco has been a magic drug for me too......I feel V lucky to have been on daily 1000mg myco for around 6 years now...

because I’ve got childhood onset simultaneous autoimmunity & immunodeficiency (CVID), rheumatology prescribes my AID meds ...& immunology has me on long term 3-weekly IVIG + daily antibiotics which are equally magic for me.

I do have to stay on daily hydroxy 300mg + 10mg pred, though, cause during infections I must pause myco, so I can’t rely on myco by itself

Am v much relating to your GI issues...mine are Crohns-like early onset & have been progressively debilitating mouth to exit (all the usual diagnoses from chronic: gastroparesis & oesophagitis & gastritis & SIBO to visceral hypersensitivity + obstipation etc etc....basically CIPO). Have been in a Intestinal Failure on exclusive EEN for 2 years now... of course can’t digest food at all + for sure can’t tolerate any food residue/fibre: I don’t really miss eating cause I feel A LOT better on this regime...but one more Fillet steak medium rare would be magic...

Have corrected that typo: yes, due to predictive test + 66 year old vagueness

Barnclown
Barnclown
in reply to Barnclown

PS apologies, Jen, for this diversion...wishing you success with myco!❤️🍀

Jen3131
Jen3131
in reply to Barnclown

Thank you 🤞

You only need an hour’s gap between Mycophenolate and a PPI. I take myco first thing in the morning and again around 5.00 pm. I take esomeprazole at lunchtime and before I go to bed.

The best advice of course is to contact your rheumatology nurse!

I’ve been on the maximum dose of mycophenolate 1.5 g twice a day and also maximum lansoprazole 30 mg twice a day and ranitidine too. I’ve been on this for at least 6 years, I think I was one of the first.

Mycophenolate has been a life safer for me literally. My lung function wasin serious decline and this had initially reversed it and now plateaued, I feel well.

I hadn’t been told to take the two separately and haven’t. I do have serious reflux and take the usual measures, bed on bricks, diet, food timings before bed etc, but we all learn.

The advice you’ve been given may be a consequence of the drug roll out and others experience.

I will now gap my pills.

Thanks for the post.

Go for mycophenolate xx

Good luck and best wishes x

I think it said it was your choice to take separately or together. I just wanted to reduce the risk of nausea and stomach problems plus try and work out how close you could take it with the lanzoprazole. I think we are all different - I can’t take Methotrexate because it gives me the same bad side effects as a cancer level dose which isn’t meant to happen! I really want this new drug to work for me.

It’s definitely been the best thing for me.

I just take all my pills twice a day. I was trialling the drug.

It’s been a revelation for me.

I will take my evening pills a short period apart now.

Best wishes x

Thanks for starting this topic as I've been worrying about Mycophenolate. I refused it last year because I was scared to add any more drugs to the long list I already take. Now my consultant is pressing me to take it as he thinks it will me as things have worsened. It's helpful to see how everyone else copes with it.

I’ve been on it for a long time and trialled it. It’s reversed my lung disease.

If I get an infection which I’ve not had for over a year, I half it and double my prednisone.

I wish you good luck.

It’s been the best drug for me. I’ve taken methotrexate and lost some hair etc. I couldn’t take azathiaprene though, it affected my liver.

Good luck x

Hi, I took 2 tablets twice a day 12 hours apart and lansoprazole at the same time in the morning with no side effects. I've stopped it now following improvements in my inflammation and because I started to get lots of colds and other infections. It helped me a lot and I'd take it again if I needed it.

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