Listen to your body and trust your instincts! Ring your rheumy nurse.

[tiredmum]

I have asked a few questions recently about mycophenolate and how I was still struggling with my Lupus symptoms and that even though I am supposed to have appointments every three months with my consultant they got cancelled twice so it ended up being 8 months.

Well I finally had my appointment today and boy did I get told off - but in a diplomatic way.

Apparently I should not have listened to my GP who told me to "carry on as your consultant has a plan" and I should have contacted the rheumy nurse to get an urgent appointment.

It looks as though the MMF isn't working well enough and so have got to increase the dose and increase my steroids and have an MRI to see why my legs aren't working as well as they were and to return in 6 weeks !!!

I know us true brits like to carry on as much as we can, but it really isn't the answer.

If you have unexplained symptoms PLEASE contact your rheumy nurse before you go down hill too much. Its so much harder to climb back up again

[Purpletop]

I agree with this, altough I tend to go to the rheumatologist as soon as something odd comes up and sometimes that proves to be transitory, I'm sure he rolls his eyes every time he sees me. It is best safe than sorry, my view, but I have started now to give it few days to see how things develop before speaking to doctors.

I'm glad you now have a plan and that you're being taken care of, let us know how it goes with the increase in dosage, it would be interesting to know if it addresses the issue.

[mstr]

Thank you that is really useful advice and it is good to be reminded to ring the rheumy nurse. I tend to think oh I will wait until it's serious to do that when in reality it is good to just check things out we are unsure about. Thank you

[jk2503]

I agree with the above comments, its better to be safe than sorry. I always ring my docs now if i dont feel quite right. You know your own body and when its not quite right. A quick call to the rheumy and a bloodtest (even if a false alarm) is the best thing rather than letting things go too far and putting yourself in hospital. Ive done that before and will never do it again. We all try and plod on or be strong, however you want to look at it. But SLE is a complex illness that needs to be managed so just ring and see the doc