I have been taking MMF for just over a year now.I increased them gradually and they really did help with my Lupus symptoms.
However as I have posted before my main side effect is that I have my own central heating system. All throughout winter I have lived in a T-shirt where as previously I looked like mitchellin man with the amount of layers I used to wear.
I then had my dosage put up to 2.5mg a day and I have found that I am unable to go out of the house once it's above 20 degrees as I feel so awful.
At this dosage along with 15mg steroids as long as I am cool I feel amazing. But this does mean I have become a recluse.
I then had my tablets increased to 3mg as steroid dose too high, since then have had the runs and no appetite and the heat symptom is now controlling what little of a life I have.
I have had to cancel hospital apps and haven't been for blood tests for weeks as I am unable to sit in warm waiting rooms. I can't go out with my family unless it cloudy or raining.
I tried to go to my niece's wedding yesterday. Got there ok in the car with the air con on. Did ok throughout the morning. By 2pm I am lying on the floor of my hotel room 3 inches from a fan feeling so nauseous, light headed and exhausted it was unbelievable. My partner went a bought me ice cold drinks and bags of ice to try and cool me down.By 7.30pm I felt well enough to get off the floor and into our aircon car to come home.
It's bad enough being poorly all the time, but I just feel like i'm ruining everyone else's life too. We are supposed to be going on holiday in a caravan next week, I have no idea how I am going to manage but I don't want to cancel as that's not fair on the rest of my family.
Think I need to start doing my rain dance now.
I have decided to reduce the MMF back to 2mg, but I am seriously considering stopping them all together.
Any suggestions would be fantastic