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Immunosuppressants and infusions

(21 Posts)
NotAsYoungAsIWas Tue 30-Aug-16 12:08:19

Does anyone have any experience of mycophenolate mofetil or Rituximab?

TopazRocks Tue 30-Aug-16 19:40:47

Yes, i take MMF aka mycophenolate mofetil. What do you want to know?

NotAsYoungAsIWas Tue 30-Aug-16 19:52:13

REALLY long story that I won't bore you with. My daughter was diagnosed with a rare autoimmune disease in 2014 and she has been taking MMF (along with a whole cocktail of other drugs) for a long time. I know that she shouldn't become pregnant whilst on it and wondered what others experiences had been. Thanks for replying.

TopazRocks Tue 30-Aug-16 20:15:37

Correct, strict rules about not having a pregnancy while on MMF. this didn't affect me as my family was complete and DH had had his tubes done. I think any woman wanting to conceive on it should DW docs and possibly start an alternative. Or have a trial without for the duration of conceiving and gestating. I've been on MMF for similar time - also have rare AI disease and tried two commoner immuno-suppressants first which made me very unwell. By comparison MMF is okay for me, suits quite well and controls my disease quite well.

NotAsYoungAsIWas Tue 30-Aug-16 20:19:13

She's 18 so her pregnancy days are yet to come. She's hoping to be offered an infusion instead (fingers crossed). Can I be really nosey and ask what your AI condition is? Feel free to tell me to sod offgrin

TopazRocks Tue 30-Aug-16 21:53:06

I'll bet you a fiver you've never heard of it! Autoimmune Cholangiopathy. It's a rare variant of a rare condition.

NotAsYoungAsIWas Tue 30-Aug-16 22:18:05

Looks like I owe you a fiver! Let me try and win it back - heard of pemphigus vulgaris?

TopazRocks Tue 30-Aug-16 22:26:36

Sorry, I have heard of it - though couldn't tell much. A skin condition i believe. (I am an ex-HCP) Your poor daughter having something like that so young.

NotAsYoungAsIWas Tue 30-Aug-16 22:33:50

Damn it - I'm a tenner down now! My heart bleeds for her it really does. She's having a tough time atm but I'm sure I don't have to tell you that you're up one minute and down the next.

mineofuselessinformation Tue 30-Aug-16 22:48:25

Hi, OP. My dd1 also had a rare autoimmune disease, but is now in remission. She initially had MMF, and yes, it is teratogenic.... However, she wasn't compliant with the drug, so was offered Rituximab. Six-monthly infusions, job done. It was also the Rituximab that finally resulted in her being antibody negative after two and a half (very long) years.
She has been antibody negative for the last two and a half years, and has stopped treatment.
If you are in the East of England, you may well know of Dr Jayne at Addenbrookes. MMF was a trial drug for dd's disease, whereas Rituximab was more widely used (dd also tried Azathioprine, but suffered a very bad reaction).
Having a child with such an illness can be very worrying, but as you probably know, huge advances have been made in the last ten to fifteen years. flowers

mineofuselessinformation Tue 30-Aug-16 22:51:27

I forgot to say, the Rituximab infusions left dd feeling knocked out and with a horrible taste in her mouth for two to three days - she also sometimes needed a massive dose of steroids which messed with her appetite, sleep pattern and mood - just something to be aware of (although she still favoured it over the MMF as it was done and dusted for another six months).

Davros Wed 31-Aug-16 00:03:45

I've got a friend on Rituximab at the Royal Free. I'll ask him about it.

NotAsYoungAsIWas Wed 31-Aug-16 10:16:54

mine

We are on the South Coast and my DD is seen by a local consultant and her primary consultant at Guys. Today is the big appointment (at Guys ) where she is hoping to be offered Rituximab. I'm a bag of nerves, hardly slept and feel absolutely sick to my stomach. DD is putting a brace face on but I know that if ritux is refused she will be devastated

NotAsYoungAsIWas Wed 31-Aug-16 10:17:35

Thankyou Davros

mineofuselessinformation Wed 31-Aug-16 12:41:29

Good luck with today.

Davros Wed 31-Aug-16 15:29:23

I will see my friend in the next couple of days and report back. When I asked my consultant about Rituximab for my Scleroderma she said it was not suitable for me as it applies more to arthritis-type symptoms. Not sure how true this is. I've been Offered Iloprost (which my friend also has) but I don't want to do it, my life makes 5 days nearly all day being infused quite difficult (see my Iloprost thread)

mineofuselessinformation Wed 31-Aug-16 18:23:52

Davros, dd's condition is Vasculitis related. I've had a quick google, and can see rituximab listed as a treatment for scleroderma, although I don't know how old the information is.
Hope that's useful to you.

NotAsYoungAsIWas Fri 02-Sep-16 16:41:10

Update - my daughter was declined the Rituximab as the risks for her outweigh the meds she's on. She was devastated but it's not all bad news. Cons may begin to swap MMF for a pregnancy friendly alternative at her next appt in six weeks.

mineofuselessinformation Fri 02-Sep-16 21:16:35

Does she want to have a baby soon?
My understanding is that you need not to have taken MMF in the year prior to getting pregnant.

NotAsYoungAsIWas Fri 02-Sep-16 21:18:53

She queried that with her consultant mine and he said it would take a little time but not a year smile

Davros Sun 04-Sep-16 11:13:09

thanks for that mineofuselessinformation I am going to phone them to get more info about Iloprost before I chicken out

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