Now that Actemra has been approved, it's the next med on my list to try, but I am getting very frustrated that 2+ months since approval, the insurance company still doesn't have the codes for it and my local hospital still doesn't have any in stock. My RD says that if they used this med for cancer, they'd have it in stock the next day (an exaggeration I'm sure, but still a good point).
Has anyone else been able to start this med? Did you have any trouble getting access to it?How awful that they are piddling around! I hope you get on it soon. Let us know how it goes. Have you tried contacting Genentech directly via the information the Actemra website? Maybe somene there can be an advocate for you.You and I seem to be following the same biological pathway. I started Simponi a few weeks after you did, and at my last RD visit, we both accepted that it's not working. I've been on all the others...Enbrel, Humira, Remicade, Rituxin, and Orencia, and they either worked for about a year and then fizzled, or like the Simponi, they ddin't work at all. Next step will be Actemra, which will probably be started next month when I see him again. He's hesitant to use it, due to the side effects, but we've reached the end of the road, so I will be his first patient placed on it. Be sure and keep us updated when you start it, and I will do the same. Good luck!Thanks for the responses. I'm not on any biologicals in the meantime, but since the Simponi didn't work for me, it doesn't really matter. Contacting Genentech is a good idea...if I get some energy, maybe I'll give that a try. I know the office mgr at my RD's is working feverishly with the various insurance companies as well as the head pharmacist at the local hospital. She's quite a pit bull (with her job, she needs to be) so I'm feeling pretty confident that all that can be done is being done. She did ask me to contact the insurance directly to ask about my out-of-pocket costs, however when I did with the codes she gave me, they told me that any non-cancer diagnosis submitted with those codes would be rejected (and of course this is the one biological approved for RA and not cancer)....ugh! To add more insult to injury, my insurance specialty pharmacy keeps contacting me about it, but they only provide it if it's being done at the doctor's office, not the hospital.Infusion went fine, no adverse reactions. I don't feel any difference, but I never expect anything to happen right away. Just have to wait and see. Thanks for all the encouragement. Bumping thread up - how are our Actemra patients doing? Is it working for you?
Well, I had my 3rd dose on Friday and the interesting thing is that my CRP and ESR, which have been very high for 5 years, both dropped to normal range after I started the Actemra. I haven't started to feel any better, but I am hoping this is a sign of good things to come.Thanks for the feedback. Yes, I hope those are signs of better days ahead. I'm sorry you're not feeling better yet, though.
Glad you lab values are back to normal Suzanne, hopefully you joints will follow! I still haven't started it yet, probably won't until I see my RD in 6 weeks. Meanwhile, the Simponi continues to do nothing....
Hi
I didn't take this, still I was on crestor. Generic for Crestor is a cholesterol-lowering medication. This medicine works by blocking the production of cholesterol in the body and reduces bad cholesterol levels.
keep fighting for it :)
Hello
so I have been on Actemra for 5 months and thought i'd share some info. To start I have severe RA, was hospitalized for a month and on iv steroids and a butt load of meds and my dr decided to start me on Actemra. I noticed a dramatic difference after the 3rd infusion - from not being able to function to tackling stairs. After my first infusion i had severe soreness, headaches and increased cholesterol but after each infusion the severity of the symptoms decreased and now normal cholestrol, minimal soreness for a few hrs and a headache for an hr max. What i'm trying to say is be patient! Also I found although I have not been able to handle MTX b4 I can no do so alongside the Actemra with no adverse reactions. Keep in mind a lot of ppl find the effects wear off after 3 weeks. To combat this my dr increased my dose to 9mg/kg every 3.5 weeks instead of 8mg/kg every 4-5 weeks. I am now able to do things I havent been able to do in 4 yrs. Im not completely pain free but now 2 tylenols do the trick instead of my regular oxy and now no NSAIDs. Also Roche is working on subcutaneous injections 162mg weekly and/or biweekly. My advice give it time to work, be patient (at least 6 infusions), setbacks and side effects are to be expected but don't take it to heart just keep pushing, there are options. Good luck!!
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