Forum

Betaferon Use

I have been a Betaferon user for about 10 years and, touch wood, it works very well for me.

However, my GP is a little concerned about the level of protein in urine samples I have to give (I am also a diabetic and they monitor me very closely). I pointed out that the Betaferon leaflet talks of protein in the urine as a recognised side-effect, but she says my reading is too high.

I then ask what should it be and she says “lower than it is” but will not give any feedback as to what sort of level a Betaferon user might expect. She has hinted that she may want to take me off Betaferon to try and sort out the problem but I will fight tooth and nail to prevent as the drug has made my life so much better.

Any advice/knowledge from any Betafern user out there on the expected levels when using ?

Hi, I’m no help really, but you might be interested to know that I have been on betaferon for 16 years and my urine has never been tested in relation to betaferon! In fact I didn’t even know this was a side effect, it has certainly never been mentioned to me. Cheryl:-)

I’ve never heard of it either, not have I ever had a sample tested - just an annual blood test.

it also works very well for me so I’d fight to stay on it. I think sometimes GPs aren’t aware of the risk of coming off it and what might actually happen.

Val (Betaferon user 9 years)