New medication

[JCZW]

I hope everybody is as well as can be expected. I have just been prescribed Mycophenolate by my rheumatologist as I have had an adverse reaction to the increase in hydroxychloroquine.

I would appreciate any guidance on the impact anyone has had positive or negative.

Many thanks

[Galaxy2]

Hi there

I used to be on mycophenolate, for 4/5 years or so. I remember for a while I was quite nauseous for a few hours after taking it but this passed as I got used to it and I tolerated it really well . It really did help my symptoms too once I’d been on it a while.

Hope it works well for you!

[JCZW in reply to Galaxy2]

Many thanks for your response that helps me alot. When you read the leaflet that is enclosed in the box it frightens you to death.First hand information is always the best answer.

[Galaxy2 in reply to JCZW]

I know, there are risks to all these medications, reading about them isn’t great at all, but you have to balance it all with the benefits.

One thing I remember and you may have been told this, not that this time of year it’s a problem, but you need to avoid the sun/wear factor 50 in it.

[JCZW in reply to Galaxy2]

Yes I agree with you. I have just read that you need to be more careful about being out in the sun.

[Lupiknits in reply to Galaxy2]

I’m on mycophenolate and have had no problems on it at all.

I noted that the warnings about avoiding pregnancy are similar to other meds of a type which need to be treated with respect. I was surprised to see the warnings to men applied equally in terms of about making doubly sure they use birth control. I don’t think I’ve seen that before.

I hope you do well on it.

[JCZW in reply to Lupiknits]

Thank you for your response. It helps a great deal knowing how people cope on it.

This forum is great for that as we experience it first hand.

Many thanks.

[Adiahama]

Hi JCZW,

My daughter with SLE has been on Mycophenolate and hydroxychoroquine for over two years now so I believe it’s good. I understand it’s a more tolerable alternative. Your Doctor will definitely monitor your blood monthly to see how you’re getting on with it. Wishing you the very best.

[JCZW in reply to Adiahama]

Thank you so much for your response.I'm feeling more confident about taking it now. I also have to take it with hydroxychloroquine.

Once again many thanks.

[nottypical]

I, too, was changed to mycophenolate. Still on 250mg morning & evening - after 3 years no side effects - unlike prednisolone which worked but was horrid.

[JCZW in reply to nottypical]

Thank you for you response.I agree prednisolone is horrible.

I'm feeling much more confident about taking it now.

[Salzer]

Hi JCZW. I was started on mycophenolate a few weeks ago after methotrexate unfortunately stopped working for me & made me feel really ill. I know what you mean about the info leaflet & the info out there on the internet! Everything I read about it was a lot scarier & more negative than methotrexate or azathioprine. However it's been fine so far. I had some heartburn the first week but that has settled. I'm really hoping it works as I'm running out of options at this stage! My rheumatology nurse was very positive about it so I'm going with that. I hope it works for you too x

[JCZW in reply to Salzer]

Many thanks for your response. Fingers crossed it still keeps working for you.

I had methotrexate injections that worked well until my blood count became low.

It has really helped talking to people who experience the same conditions.

I hope things continue well for you. Xx

[Elise3457 in reply to Salzer]

I have SLE and take nothing for it and still have dreadful nausea...For me its one of the worse parts of SLE.

[NikkiDavies35]

Hi ,

I’ve been on mycophenolate for 4 years 2x500mg mornings and 2x500mg nights combined daily with 6 mg of prednisolone . I’ve tolerated it really well up to now I have had a few blips along the way but my rheumatologist team are amazing and don’t mind me asking them about any queries that I may have so please don’t be afraid to ask them anything as what my team told me that’s what they’re there for.

My rheumatologist has also prescribed me daily vitamin D tablets re having to be careful in sunshine also esomprezole to cope with reflux acid. My main tip would keep be to be very careful and monitor your sickness and reflux symptoms and if they increase after a few months like mine did you may find that your local pharmacy may have changed your prescription tablets although they are branded Cellcept or Esomprezole they very often change them to generic type tablets which I totally appreciate are cheaper than the original brands but these have different coatings on the actual original branded (egRoche ) tablets which didn’t agree with me. My rheumatologist immediately advised me to ensure that I always get the original branded names which solved the problem.

I’m sure you will be fine good luck and remember we’re always here for you.

[JCZW in reply to NikkiDavies35]

Hi NikkiDavies 35Thank you so much for your response.

It really helps being in touch with people who are taking Mycophenolate.

I do have a very good rheumatology team .

My gp is also very supportive.

Once again thank you, you have been very helpful.

This forum is so valuable and it helps knowing people are there for support.

Many thanks.

[Elise3457 in reply to NikkiDavies35]

I take Bi carb soda for reflux and heart burn..works great and not bad for your health.

[NikkiDavies35 in reply to Elise3457]

Thanks for your kind suggestion it’s very much appreciated but unfortunately due to me having other major health complications my rheumatologist has advised me against taking Bi carb for reflux and heart burn which is such a shame. Thanks again and hopefully your tip will help others reading this .