Hi guys, anyone got info or have any experience on TOCILIZUMAB, it is an IL6 inhibitor I would be grateful for any input, as I am considering a trial of it soon. Many thanks Janie.
I had to go a-googling for info. Also called Actemra. Looks like it's a cytokine.
How are you? Is Liam still doing well? Take care, Janie and good things to you both!
Hi I am copying this from another thread to enable my other friends to catch up, I have been busy with the kids over the hols and so fatigued, I find it hard to even sign in! Hope you are all bearing up and enjoying the new year!
Hi guys, thankyou Sam for your info, I appreciate your efforts.
Waddie, thanks for asking how I am going and Liam, I have bee extremely fatigued, may need another iron infusion, also have had thyroid tests and awaiting CT Abdo, hands and feet xrays, bone mineral densitometry and Colonoscopy/endoscopy and capsule scope of some sort, you swallow the camera etc, had one before, went thru in 1 hour, specialist said it should take 5 hours but I was not absorbing hardly anything especially iron due to inflammatory damage and drug damage! So thinking of starting Actemra, available here on PBS if you qualify (I don't due to already having had 3 diff drugs not work) so may have to apply on compassionate grounds. Don't know if I really want it, I have managed to push MTX up to 20mg weekly which for me is fantastic, side effects are becoming an issue but I would rather stay on this and reduce pred, but having great trouble doing this so for now I am awaiting all these tests which I plan having once kids go back to school.
Liam is fantastic thank God, doing really well, starting high school next week, hope the anxiety stays under control, joints play up occasionally but so far so good. Epilepsy under control and he is back to his happy self, thanks again Waddie, let me know how you are going please. I am going to copy this to a new thread to let my other friends know what is happening, cheers, Janie.
Hi Janie, the UK has been denied this drug for RA...its all about its cost effectiveness
Thanks Pin, good to know, I am discussing the drug with GP tomorrow as the cholesterol and blood pressure risks may be the reason not to go ahead as we are battling constantly with drugs and diet to keep both down, I must admit since I have been swimming regularly and trying to walk too, my BP has come down and my pulse from 144/96 and 92 to 122/78 and 78 - excellent for 3 months work, and enjoying it when not in too much pain! Thanks from Jane.
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