Mycophenolate mofetil

[nutler]

Has anyone been prescribed these? I've just started them but the side affects on the packet are a little worrying.

[Ccupcakes]

Hello nutler ,

Welcome to the forum. I'm sorry it's taken a while for you to get an answer , it's usually quiet on here at the weekends.

Yes, I have been started on Myco. after a six month course of Cyclophosphamide, another, very strong DMARD.

I started them about 6 weeks ago. I'm very sensitive to new meds, so my Rheumy started me on a low dose increasing gradually, it was ok until I increased the dose the second week and then I caught an infection , I have a lung disease, which is quite new , rare and Lupus associated, I have been really ill with the infection, it made me extremely weak, (I actually was confined to bed and that , my freind just doesn't happen!) My temperature was very low, BP very high and breathing was dreadful.

The reason I'm giving you history is because I blamed the Myco for the awful symptoms and now think I was mistaken. My Rheumy stopped them while I took ABs, I've restarted them and am now up to half dose with no real ill effects other than a very sore tongue and a distinctly altered sense of taste. They do however play havoc with my blood sugars, I've had to adjust my diabetes meds to settle it down.

There are others who use this med, I expect they will be around soon with their advice, it's invaluable, the support you get here.

Once again Welcome to you.

Ccxx

[Mandy30lup]

hello

I have been taking Mycophenolate Morfetil for 9 months now (2x 500mg a day.) I get the occasional unset stomach but my consultant said that's normal but if it gets really bad then we can look at changing it. I find the the drug has really helped me, i do still have active lupus but apart from the odd skin lesion (which i think is down the the sun) i have no other noticeable symptoms on lupus. I was on 3 tablets a day which made my blood count go funny and had to go back down to 2 a day. My bloods are now stable, but my consultant wants to increase it back to 3 a day during the autumn/winter months. my consultant said it would also help with the raynauds.

You have to have routine blood tests, which start of every week, then every two weeks, and then every month (which im on), which is bit of a pain. I was worried when I first started the drug but I was lucky to have responded ok with it and seems to be doing the job. I have read that for some people it doesnt even work. I think it depends on the individual person.

good luck and hope this helps

[maggielee]

Hi I just got prescribed this drug, your right about concern about possible side affects, not nice. My rheumy said I had to get a pneumonia shot first as I read it suppresses your autoimmune system. I think the shot is a one off and then yearly flu shoots

There is a lot of feedback on the forum about this medication if enter it in the search above. Also check the Molly Fund website. It will be interesting to see how you do, I waiting for the shot first and they will no it of my bloods...

Not looking forward to it at all. Good luck ML

[maggielee]

Should say I have SCLE, sjorgrens, Raynaud's.. ML

[1sam]

Hi. I've been using it for 1.5 years and it is great managing my lupus symptoms and nephritis due to SLE. I learned to not take it on empty stomach or with coffee/spicy foods.

We all respond differently to a treatment, trial and error is the only way to find the right combination for you.

Be well!

[nutler]

Thank you for taking the time to reply. I will have repeat bloods in 2 weeks time then in October with a specialist nurse followed by seeing my consultant in December. I've started on one tablet, if my bloods are OK in October they will put me on 2 tablets. I can go up to 6! I've been on them a week now. Could be completely coincidental but today I've woken up with a sore throat, tight chest and burning body inside and out.

[nutler]

I've been on them since July. I still sometimes wake up with burning feet and have minor flares. I think I've had one bigger flare when I've had painful arms and couldn't move them. I opted to not up the dose in December because I found them very strong and had reduced fatigue which is what I wanted. I've had a lot of stress this last 7 months but I think the tablets have helped hold off big flares. Rhumotologist is going to try and take me off of them at the end of this month. I've been anaemic on these. It might be a coincidence that I'm just on the tablets. But I was put on the pill when I started them and periods have reduced. Still get the flare ups when I come on but they are mild compared to what they were. I really hope I can manage without them. Shortly after starting them my bloods where all good so was shooked that the last set came back that I was anaemic (although did have a bout of fatigue) My GP said I was and it was better than my last bloods so I don't know why the rhumotologist or nurse hasn't said anything before. Fettin levels have been requested this time before any iron tablets given. we will see what happens. Seeing what the rhumotologist says in June. The nurse said if I really struggle coming off them they can arrange an emergency script. Fingers crossed things have settled down enough to come off them

[nutler]

It is cruel. Hope the retirement gets easier x

[nutler]

Thank you for taking the time to answer. I asked if I was tested for B12 deficiency and was at the start and it was fine about 2-3 years ago. But not tested since. My last bloods said I had low iron stores but wasn't anaemic. I've since come off these tablets in May so was on them nearly a year and touch wood I've been fine. I enjoyed the sunshine. Had flares up when I come on but goes after I've stopped being hormonal so much more manageable. I'm now being tested for bechets disease gene! Although told it's the same treatment