Mycophenolate mental side effects

[Choccy8]

Hello lovely lupus folk. I hope everyone is keeping reasonably well and enjoying the spring weather, if only through a window! I haven't posted in a while, though have been keeping up with everyone's posts. It's been a bit of a difficult time, as my mum passed away at the start of February. I'd been caring for her for a couple of years, and we'd always been close, so I really miss her. I now have a delayed rheumy appointment next week, and would like to pick your brains before then on a problem that's come up... I've been back on Mycophenolate for around six months now and am beginning to suspect that it's causing insomnia and a bad feeling of agitation/stress that is quite difficult to cope with. I stopped taking it over the weekend as I had a urinary infection, and was getting off to sleep earlier and feeling much calmer. Started again with one dose on Sunday, one Monday, and I'm climbing the walls and googling symptoms of nervous breakdown... I had to stop hydroxychloroquine around a year ago because of similar symptoms. The Mycophenolate is working well to control the lupus, but I don't know if I can carry on if it is causing these side effects. Has anyone else experienced similar side effects, and if so, what drugs have you been able to tolerate? I've been taking a dose of 500mg 2x per day. Thanks very much

[Spanielmadlady]

Hi Choccy.so sorry to hear about your mum.sending you condolences and hugs.I think it's a difficult one to call. Insomnia comes with lupus anyway and you've also got alot of stresses going on inc the grieving process. you haven't been on mmf that long and your dose is relatively low.ive been on it for 2 1/2 years and swing between Insomnia and sleeping for England.ive just had my mmf dose upped from 2gms a day to 3 gms.i can't take my 3 tablets at the same time twice a day as consultant prescribed if I do I get side effects of nausea and headaches but I'm ok if I spread them out throughout the day ( consultant approved) 2 at breakfast,2 at dinner and 2 at teatime .when do you take your last one ? Have you tried taking it earlier in the day ? I think the best thing to do is to discuss with your consultant .xx 🤗🤗🤗

[Choccy8 in reply to Spanielmadlady]

Thanks so much for your reply, Spanielmadlady. You're doing well, coping with such a high dose of myco. I think my stressed feeling might have been the first stage of a migraine, and not the Mycophenolate after all. I will have a go at experimenting with when I take it and see if that helps. Thanks for the suggestion x

[Krazykat26]

Hi Choccy 🤗I'm sorry to hear about your mum's passing recently. My thoughts are with you at this difficult time. 😔

I don't take myco but I will say that whenever there is loss..a grieving process has to take place. It's natural and there are no time limits to grief. Part of the grief process involves anger and it may be that you're in this phase now as you're feeling agitated/stressed. You have to be very kind and gentle with yourself right now lovely.

That's a beautiful springtime blossom pic..we've had snow here in the Midlands last night!!

Best of luck with your upcoming rheumy appt. Take care of yourself 💜🌈😽😽xx

[Choccy8 in reply to Krazykat26]

Thanks for your kind reply, Krazykat. I think I might have been a bit quick to blame the Mycophenolate for the stressed feeling. It seems to have got better for now, fingers crossed! The picture is of big magnolia trees at Trengwainton gardens in Cornwall a few years ago. I'm in Wales, so not so warm as down there, but we've got the sun back today!

[Spanielmadlady in reply to Choccy8]

The magnolias have been glorious this year...little wind to damage the flowers maybe.Thanks I suffered side effects with every increase ...terrible headaches and nausea In fact my second increase at the start I asked to delay as I couldn't lift my head off the pillow and my grandson was due but they improve if you can ride them out.be extra kind to yourself you deserve loads of extra tlc .I wish I could make you a cuppa and sit down with a plate of biscuits xxx

[NewEngland3]

I have had the same side effects on MMF , however over time they got better, taking it earlier in the day helped as well. I am on a non controlled sleeping pill due to the side effects and sleep well now.

[Choccy8 in reply to NewEngland3]

Thanks for your reply, NewEngland. That's good to know that your side effects got better. I will have a go at taking it earlier in the day and see if that helps.