I have only been on Remicade for eight weeks, but I feel almost as healthy as before I developed ulcerative colitis almost 30 years ago. I have been suffering from Pouchitis and Cuffitis for seven years, unable to work full-time or even live a normal life. OMG, it is wonderful to feel normal.
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Remicade worked great for me when I had UC, it worked for almost 5 years. There are more blood tests for Remicade currently then when I was using it in 2005; now they can measure the Therapeutic serum levels for you and if you have antibodies.
There are plenty of other biologicals to use if you need to, i'm on my 5th biological now (Stelara). It works great for my pouchitis.
Remicade almost killed me but I’m in Entyvio now for over 2 years and finally 18 years doing great
Allykat, I am sorry you had a bad reaction to Remicade. I had asked for Entyvio but my doctor's practice is not a big supporter of Entyvio. Apparently their patients have had more negative reactions to Entyvio than Remicade.
My GI just measured my antibodies on E last week. There’s a new pill in phase 3 ready to get released. Unfortunately I had melanoma so I don’t qualify.
I also had a bad reaction to Remicade. Put me in the hospital with severe pain. It also really did not work for me with my UC. Hence, the j-pouch.
I just saw my new GI today (my old GI retired: good for him, boo for me). In my clinic they are switching stable patients on Remicade over to the biosimilar Inflectra (infliximab-dyyb). Less expensive, but just as effective. I will be having my first infusion next week. Fingers crossed it works well for me!
Of note, she told me that there will soon be a biosimilar available for Humira.
Jan
Jan, I’m assuming you mean a generic version?
“Biosimilar” is a bit different from regular generics. Biosimilars are almost identical molecules, but not exactly so. They have a small-but-greater risk of differing in function from the brand-name product than generics do.
Yes, biosimilars are not generics, but more like a new brand name. Still very expensive, but a lower price. At my Kaiser clinic they are switching over all their stable patients on Remicade to Inflectra. Studies show the effect is the same and my doc said their patients do well in the switch. I am all for lowering costs. I was comparing, and Remicade has gone from $14,000 to $18,000 per infusion since last year! That is the medication only.
Jan
I am very grateful for everyone's comments. The more I learn, the more confident I can feel in my treatment.
I had 6 amazing months on Remicade. It helped the pouch a bit but the relief from constant arthritis was out of this world. Then it just stopped being as effective, now I'm on Humira injections and MTX injections.
What are MTX injections?
Methotrexate.
I am going in for my next Remicade infusion on Friday March 9 and will ask about Inflectra. Thanks for the info Jan.
Regarding the cost of Remicade, I enrolled in something called the Janssen Savings Program. They sent me a Remistat card and they pick up the cost of the medication with a $5 copay. The only catch is they don’t pick up the cost of the infusion time, which is about $414 per infusion.
I have a $3000 deductible and $5000 maximum out of pocket copay through my Anthem plan. Much to my surprise, the Janssen payments went towards my deductible. I put $3400 in my HSA effective November 1, 2017 and although the balance is around $2400 at the moment, my deductible is exhausted due to the Janssen savings program payments. I only paid a $414 infusion time and $5 copay on the first policy period infusion.
So I wonder when factoring in Janssen and what they pick up, whether Remicade is really costing me more than Inflectra would. Does Janssen help out on Inflectra? Is there any going back to Remicade once you go on Inflectra and, for example, have a reaction to it?
No, Janssen does not do reimbursement for Inflextra (competing company). However, Pfizer has their own reimbursement program- enCompass: https://www1.pfizerpro.com/pro...ursement-and-support
The change will save my health plan money, so I am fine with anything that helps keep costs down. That helps keep premiums down. My out of pocket is the same regardless.
I also was using the Janssen CarePath, but it has been a real pain. Since I have Kaiser, they bill me, and there is no charge at the time of service. Last year it was not too bad, but this year they have me jumping through more hoops. I am on my third denial for my rebate request. On the phone they tell me what to send. I send it and it gets denied. They keep asking for my receipt of payment (like a cash register receipt), and I keep telling them that all I have is the bill, the EOB, and proof of my online payment. Like you, my deductible and most of my out of pocket was wiped out with one treatment.
I told them that it is begining to look like they just are denying my claim out of hand without even looking at my paperwork. Fingers crossed it goes through...
Jan
If one had a bad response to Remicade after one injection (serum sickness), what are the chances of a negative response to the other biologics?
They are all quite different (except for biosimilars). They are in the same class, but that is about it. If you develop antibodies to one biologic, you can still try others. I don’t know what the overall risk is though.
Jan
Jan,
My doctor's office's billing department deals with Janssen Carepath. Since Janssen sent me a credit card over 2 years ago, I turned that card over to my Doc's billing department and I never had to deal with all of those administrative hassles you are mentioning. Although I did get a letter from Janssen recently that asked for stuff. And recently my doctor's office sent me a form I had to sign and return to Janssen. I think it basically was an agreement not to engage in fraudulent obtaining of benefits/monies from third parties in consideration of Janssen having helped me out. Anyway, the deductible of $3,000.00 was in fact wiped out with one infusion. The only reason I opted for that high deductible plan is because of the Remicade treatment, but the plan was at lower cost to me and required no deduction from my salary (and my monthly insurance cost is well over $1000). In addition, as mentioned above, the Janssen payments count towards my deductible AND that was the only plan of around 6 Anthem plans that allowed me to put money in an HSA and also take a deduction for that. So I ended up getting a federal and state income tax refund for 2017, of around $1000 in part due to that. It seems like a win-win-win-win situation, also counting the fact that the Remicade is working. The pouchitis/Crohn's has been well under control since late 2015.
Yeah, well, Kaiser is like the original HMO. They don’t process forms for outside entities, other than filling out school/camp/sport forms. I’ve been filing my own rebates for years. Much easier when I was on Cimzia, since I had a pharmacy receipt.
That’s OK. I am tenacious.
Jan