On 15th Aug 2013 I had my first Tocilizumab infusion as part of a blind trial to taper methotrexate with this drug.
Previous to this since my RA diagnosis starting May 09 I had been on Methotrexate, HCL, NSAIDS and occasional corticosteroid treatments by tablets or injections,
For 16 months my CRP and ESR went down to 1 & 2 and it seemed as if Toc had worked a miracle.
Now I'm not so sure.
On 6th Nov 14 I was admitted to hosp. with cellulitis in my elbow and after three days on antibiotics normal service was resumed.
Unfortunately though over the last few months a gradual deterioration seems to be in progress whereby several side issues such as flare ups of vasculitis on legs, nodules under skin in pressure areas like back of thighs, forearms etc and raised swellings on head, as well as worsening pain and stiffness, fatigue and weakness generally to the point where walking was uncomfortable especially down hill, and getting out of chairs or up stairs equally difficult without mechanical aid.
So back to the Consultants and steroids for eight weeks and of course all is now fine with no inflammation,stiffness swelling, fatigue, weakness or all the other annoying issues.
Oh that I could stay on steroids. Dream on!
After discussing change of biologic I have remained on Toc for the moment to see if everything settles down.
They want to try me on Rituximab but even with odds of 25000 to 1 against getting PML ( reactivated JC Virus and always fatal) I am not prepared to play Russian Roulette with odds that would be great for the lottery jackpot.
I wonder about Infliximab or one of the bio similars but as yet this option has not been discussed.
They tell me that sometimes drugs become less effective over time.
Has anyone else had this experience?