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Hi guys, hope I find you all well, I am awaiting Actemra STILL, but since being back on MTX and managing 15mg p/w I am feeling a lot better, just hoping liver function tests will behave as thats what took me off of it for nearly a year and I was in a big mess. Unfortuantely my bloods are still elevated more than usual esp ESR and sometimes CRP, I was hoping to get away with just MTX and pred but no, Dr says I need another agent, so keeping fingers crossed that govt will ok the drug for me.  Hope to catch up with you all eventually.  Regards Janie.  PS Liam, my son is almost 90% better, and growing into a fine young man, still has occasional knee pain and spinal pain but has been cleared at the moment of JRA, one Dr still says he has AS but we are hoping and praying he is growing out of it.Glad to read that you are feeling a lot better since getting back on MTX.  Hope Actemra will get approved and that you do well with it.  Glad your son is doing well also.Glad to hear from you Janie. I hope the Actemra works well for you. Sorry you have had such a hard year of it.

I have tried Actemra and I would run, not walk to the nearest exit if faced with trying this drug..   I feel like I have been poisoned. I was on Enbrel for ten years and it really worked-no terrible side effects. I had four infusions of Actemra starting in July 2010. I didn't feel much of anything after the first infusion. Then things went downhill. The Dr. kept saying every month that I probably needed at least three infusions, then four....I was feeling really sick and getting no pain relief. I have been feeling like I am going vomit everyday and headache, extreme fatigue, stomach pain, skin problems, etc. I have not had an infusion since October and I am starting to have a few days, finally, that I don't feel so sick. I am afraid to try anything else at this point in time and am trying to get by with acupuncture and ibuprofen. I am considering elbow replacement surgery.ggronbn562011-03-09 16:35:29[QUOTE=janiefx1]Hi guys, hope I find you all well, I am awaiting Actemra STILL, but since being back on MTX and managing 15mg p/w I am feeling a lot better, just hoping liver function tests will behave as thats what took me off of it for nearly a year and I was in a big mess. Unfortuantely my bloods are still elevated more than usual esp ESR and sometimes CRP, I was hoping to get away with just MTX and pred but no, Dr says I need another agent, so keeping fingers crossed that govt will ok the drug for me.  Hope to catch up with you all eventually.  Regards Janie.  PS Liam, my son is almost 90% better, and growing into a fine young man, still has occasional knee pain and spinal pain but has been cleared at the moment of JRA, one Dr still says he has AS but we are hoping and praying he is growing out of it.[/QUOTE] HI Babs, yes I agree, I worked out it has been 7 months but having said that I finally got approved last week and will be having 1st infusion in May as I am going to see my family in the UK for Easter with Liam, so excited, preparing as best I can for the trip, I will have wheelchair assistance and all my family know I have extreme fatigue problems so they just want to pamper me and talk, talk talk, it will be lovely. I am having spinal facet joint rhizotomy again this week as my spine has been awful, (RA in facet joints, OA in most of spine and degenerative disc disease throughout)  but my pain specialist is very good and genuinely caring thank God.  Liam still gets mild occurrences of pain in spine, hips, shoulders and knees, my RA Dr says he has AS, but he is not on any meds due to no physical evidence except HLAB27 gene, but he is much better in himself.  Thanks for always being so supportive Babs, I really do appreciate it.  Hows things going for you?  I see nothing much has changed on this board, same people still fighting and all the good people mostly gone!   Hugs from Janie.  Thankfully most people won't put up with rubbish so left and found better places to go.  I only come back occasionally as I still have friends here, thanks again Babs.X

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