mycophenolate mofetil WHAT??

steph120786 wrote:

Hi

my 3 year old daughter has just been prescribed this alongside mtx 10mg inj.

this is a drug i have never heard of...any idea?

Thanks

Hi Steph

I take MTX but I am afraid I have not come across this drug. I am sure that the helplines people will get back to you tomorrow with any info they have, but I wonder if you have been given a rheumatology nurse phone number?

I would suggest you ring the rheumatology nurse and ask them to explain about the drug, as they will be familiar with the reasons for it being used, and how others have been helped by it.

I hope that the new combination works for your daughter.

hugs
Wonky

helpline_team wrote:

Dear Steph,

Thanks for your enquiry to Helplines. Mycophenolate mofetil is classified as a similar drug to methotrexate - it seems to have an effect on the immune system. It's not as commonly used as drugs like methotrexate (in rheumatology) so we are less familiar with it. We'd suggest you might talk to the rheumatology team/nurse for more information.

I hope that is helpful

Guy

Hi,

I have been taking this for 2 years for an eye condition, schelritis. After problems on all the anti-tnf's and usual DMARD's, it is now used as my sole DMARD, as well as treatment for the eye. It has caused me the least side effects of all the drugs I have taken over several years, in fact, after the first few months, none at all now. I know it is also used to treat Lupus very often. It is closely monitored with blood tests, it should be weekly to start, then bi- weekly, then monthly. Make sure that your GP checks with the Consultant, there is a vary narrow range of what is acceptable with the lymphocytes. If the test is normal, the drug is not suppressing enough, it needs to be just below that, GP's will not be aware of that, I had this problem for awhile. Good luck, any further questions, let me know.

Regards,
Rose

steph120786 wrote:

. Make sure that your GP checks with the Consultant, there is a vary narrow range of what is acceptable with the lymphocytes. If the test is normal, the drug is not suppressing enough, it needs to be just below that, GP's will not be aware of that, I had this problem for awhile. Good luck, any further questions, let me know.

Hiya Rose

Just wondered if you could explain this in a bit more detail as this drug is quite new to us started only last week on the lowest dose poss working our way up, touch wood just tiredness no other side effects

Hi Steph,

Sorry for the delay. Not a lot more to say, I have had very few probs, I know several people on this drug at Moorefileds eye Hospital for a range of eye conditions, I have not met any one who had problems, or had to stop them. Also, if you are on the lowest dose, you are unlikely to have a problem. I have taken almost every DMARD available over the years, this has been so easy to use for me, I find that even though it effects/reduces my immune system, I do not have as many colds or infections as the other meds I have been on. I hope that is is a success for you, trust me it is far less scary than some of the others!!

The tiredness might be part of the disease, I did not have this when I started the medication. Good luck,

Rose