Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Does anyone ever spend time wondering if the biologics are worth the money? To be clear, my insurance and the pharma company copay problem pay all but a few dollars a month. But.
I've been on Orencia for a little over a year. After a few months it was really starting to do the job. Great. Time to go off it to have surgery. Restarted a month later. It's helped, but not as much as before. The way I've felt over the last month or more, I'm not sure it's making much of any difference. I've discussed the next step with my rheumy, and it's a drug that should be commercially available this fall. The agreement at my last appointment was that I would stay on Orencia until the new one is available.
It's time to call for a refill, and I'm wondering if it's a good use of anyone's money to spend $3000 for another month's worth of Orencia. Part of my justification has been that if it prevents or delays any more joint surgeries or, God forbid, replacements, it's worth it. At this juncture, how does the math work? Is it still helping at all? Would I curse the day I decided to forgo the refill? Would it make any difference at all if I quit? If it was cheap, or if it was my money I might feel differently, but $3K for a month of negligible results?
Do biologics ever start magically working again? Have any of you ever gone off one you thought wasn't working only to find it was? Am I overthinking this? OK, OK, I know the answer to that one.
I've been on Orencia for a little over a year. After a few months it was really starting to do the job. Great. Time to go off it to have surgery. Restarted a month later. It's helped, but not as much as before. The way I've felt over the last month or more, I'm not sure it's making much of any difference. I've discussed the next step with my rheumy, and it's a drug that should be commercially available this fall. The agreement at my last appointment was that I would stay on Orencia until the new one is available.
It's time to call for a refill, and I'm wondering if it's a good use of anyone's money to spend $3000 for another month's worth of Orencia. Part of my justification has been that if it prevents or delays any more joint surgeries or, God forbid, replacements, it's worth it. At this juncture, how does the math work? Is it still helping at all? Would I curse the day I decided to forgo the refill? Would it make any difference at all if I quit? If it was cheap, or if it was my money I might feel differently, but $3K for a month of negligible results?
Do biologics ever start magically working again? Have any of you ever gone off one you thought wasn't working only to find it was? Am I overthinking this? OK, OK, I know the answer to that one.
DUH on the 'ole guy - that's not what you talking about - sorry - excuse please
Smiles
Bluedogs2
plus the cost of the med, with copay assistance I pay $5.00 and a very small portion of the infusion. Besides the cost I wonder about the side effects and it not helping the RA its intended to. I'm going to see it through and try another if it doesn't work in the hopes it will save my joints and prevent any more surgery-the last one was a doozie and caused a horrible flare.
Rest well all
Bluedogs2
i don't post here about my flares and my crap, but let's carpe diem now: I am having one crappy flare.. so yeah I want the damn biologic back and i don't want any more interruptions.
I am cavalier about the orencia efficacy until I don't have it in me for a spell then i am grasping at straws to have any semblance of whatever ra normal is for me.
what it does it help me somewhat. now that I don't have the somewhat, i want the somewhat back. I don't have pred to hide the symptoms.
I am refusing actemra and xel whatever at next appointment. no more experiments. no more pneumonias. orencia is the gentlest one on infections. i did not have to be hospitalized or have oxygen for this pneumonia so i think my body is getting used to working around this biologic when sick!!!! not moving.
good luck with your choice.
depot
Peace
Bluedogs2
it's just I can't afford to do the biologics do nothing for me tune. the truth is, they do somewhat and i realize i need the somewhat for quality of life. especially since I don't take pred or narcotics.
depot
Beechfeet, they charge you $20K just to administer the drug? Yikes. I'm in the wrong business- should have started up an infusion center! I understand that insurance companies know they will get customers like us, for whom they pay out far more than they take in, and their underwriting accounts for that. Still, it's a heckuva lot of money.
Depot, sorry to hear your lungs decided to act up. I know you have stopped and restarted Orencia more than once. You do still feel like you get some good from it? I'm not sure if I am, and, of course, the only way to tell is to quit it and see if the %#!& hits the fan. I'm deeply frustrated that I had to go off it when I did, and didn't get as good a result the second time around.
Theresa, you don't have to stay on MTX with Orencia. If you tolerate mtx well they keep you on it- there seems to be a 2+2=5 effect- but a number of people don't get along with mtx and get great results with biologics. Prednisone isn't required for any of the drugs, and a successful biologic makes it easier to get off that merry-go-round.
I started Enbrel the month after Humira quit and actually got worse. Remicade almost kicked in but not where it should be after 9mo & the inflammatory markers are still high. But all are tnf's not sure if that's the issue or because I'm anti-CCP positive. Studies are showing anti-CCP are less responsive to meds. Guess we'll discuss at the rheumy appt this week.
The last rheumy did say I couldn't go back to Humira for at least a few years since she thought I'd built up autobodies to it. Who knows anymore? I think they just grasp as straws & feed me bs to appease me because it sounds plausible. Because I'm the Queen of calling them out when something doesn't make sense.
Emerald
Hurting head to toe & I did not realize the Orencia Was helping much till this hit. As I was not on it long.
So today feeling so nasty I'd not chance it. Then again thats just me.
Needing a human car wash to rinse, soap & repeat. Thought of moving just to shower has me cringing. That's with a maintance dose of Prenisone.
You don't know how you'll feel with this disease.
Tough decision.
Sammy
I have finished the mega high dose prednison to final end end end taper for the pneumonia suck off lungs thing. the pred is done (and NO i am not going to take a "maintenance" dose which means taking it like for 2 years to 20 years)
I am now effectively crippled, demoralized, shot to hell, and I have worse RA function than before the pneumonia. i can't turn over in bed, I can't walk, and I can't shit shower or shave (my legs) so yeah sammy put me in the auto wash drive through with you.
I would sell my first born for the orencia at this point
i get infused wed - I would drive like 500 miles one way instead of the 60 to get it at this point
i thought the old body sucked. it was defective but it worked. i have tried every nsaid in the house and neurontin and muscle relaxers. so far jack daniels has worked.
rant and crab over
good luck making up your mind.
depot