I had been on Enbrel for about 18 months for AS ( Ankylosing Spondylitis ) when I was informed I would be changing to Benepali. I went with it as I am all for saving the NHS money but now 8 weeks in the main AS symptoms Enbrel worked so well to keep in check have returned and i feel much worse than I have ever been fatigue wise. I seem to struggle to get going with anything and feel permanently wiped out and exhausted. I try to battle through it but then feel even worse with awful headaches as well as everything else.
My Rheumy also gave me the depo medrone injection and started me on Sulfrasalazine around the same time as I had been having issues with my hands feet and hips being very painful and stiff for a while and it was thought that the AS may be getting worse by affecting peripheral joints.
I really don’t know what is down to what and I fear I may be heading in a downward spiral as the fatigue has knocked me to the extent that I have been signed off work and still feel no better several weeks in. This is not like me at all to be off like this, only when AS first reared it’s head have I felt as unwell as I do now.
My GP seems to think it’s reasonable to take whatever time off work necessary to get back to feeling well again. He seems totally governed by the rheumy. He’s very supportive but I just want to get back on track not be left struggling.
I spoke to the Sulfra nurse about it but my questions weren’t really answered and I was advised to stay with it all until I see the consultant in Jan.
I don’t know what to do for the best?
Could all this be the change to a biosimilar or side effects of the Sulfra or am I just having a massive flare up which is lasting weeks??
Any advice gratefully received