I’ve been on 20mg injectable MTX now since January. Wasn’t really helping so dr. changed to 25mg the first of March. I missed most of March due to a bad case of strep throat and anitbiotics, so at my April appt, he wanted me to continue on the MTX until my next appt at then end of June to give it more time. He said that if there wasn’t significant improvement by then, he was going to put me on either Humira or Enbrel. The pain in my hands and feet right now are as bad as in the beginning with no meds and I’m having pain and stiffness in my lower back. I’m also not sleeping, waking up several times per hour throughout the night. Based on my sleep tracker, i’m only getting quality sleep about half the time I’m in bed. Based on this, I think it’s safe to say he will be changing my meds in a couple of weeks.
Anyone have no luck with MTX and then go on either of these and have success? I’ve read up on both and don’t know which way to go. I’m also still taking Duexis twice a day which honestly seems to do more for my pain then anything, but I know it’s not a long term solution.
Also, what about the cost? I’ve read articles claiming anywhere from $200 per shot to $2,000 per month! I know insurance coverage has a lot to do with it, but I was trying to get some kind of realistic range. As always, thanks for your help!
I had some relief on MTX but never got rid of the GI side effects. After I had shoulder surgery in 2013, I talked to my doc about only injecting Humira and doing it every 10 days. He said we’d give it a shot (sorry–my unrepentant punster husband has rubbed off on me). I’m almost four years in and have most of my life back!
My personal experience is that my rheumy likes to put his RA patients on Enbrel and his PsA patients on Humira. At one time, I knew why but I don’t remember now.
Costs: Humira costs my health insurance something like $17K every time I refill (every 100 or so days). AbbVie, the maker of Humira, has a plan to help alleviate costs. I pay $5 every refill.
MTX did zilch for me, and I had the same result with sulfasalazine and hydroxychloroquine. When it came time to choose a biologic, the doc asked me which I wanted. I think they do that so that they don’t appear to be favouring one company over the other, and it is a crap shoot anyway. I chose Enbrel, because it is the oldest of the bios, and the one about which we know the most. It worked well for me for a couple of years, and then I switched to Humira. Humira has worked well for me for 18 months, and I’m hoping for a good long run with it.
Paying for the meds varies from country to country. 6CL is in the US. Here’s a great article by @GrumpyCat. Gosh, I wish she’d come back: she’s very smart and a lot of fun.
Start with your insurance company and ask them about their coverage. Then talk to the drug company. That will give you a good idea.
In the US you can go online to any of the drug manufacturers’ web sites (Enbrel, Humira, etc.) and look for their “prescription assistance” program (Google “prescription assistance Enbrel”). It’s free to register and they tell you right away whether you qualify. Typically if you have private health insurance (not government insurance) then you will qualify. They online site will provide you a copay assistance card which looks like a regular insurance card. You will need all the numbers on that card (BIN, PCN, GROUP, ID and phone numbers) so when you place your order through your specialty pharmacy you can relay those details to their billing agent. This way they take your discout into consideration before billing you. It can be a bit unnerving when you receive your meds and what looks like a bill for $12,000! Knowing they have all the info on file is reassuring and the third party/prescription assistance typically takes about a week to process through billing and wipes out practically all of your out of pocket costs.
As noted above, the amount you pay is a fixed amount–sometimes free for the first 6 months then $5 per month after that, sometimes $5 per shot, depending on which medicine you take. For example I just got $8,800 worth of meds shipped and my cost was…$0. These prescription assistance programs are there for our use so please don’t let the fear of the cost of the medication put you off. There are ways to make it all manageable.
Like Seenie I started on Enbrel and it changed my life (right @Grandma_J). Then I switched to Humira which was also a good choice. I’m now in week four of Cosentyx and it’s still too soon to give an accounting of how it’s going.
Well, Poo, folks in the US without the right insurance are out of luck. The assistance plans (US friends, correct me if I am wrong) only kick in for people with insurance.
In Canada, we have socialized care, but our medications are not covered like they are in the UK. So…those of us with good insurance can get bios for a copay of 0 or maybe 10%. When I had that kind of plan, I was paying about $200 (tiny but perfectly formed Canadian bucks). Then my insurance went berserk (long story you don’t want to hear, typical of private insurance) and changed my policy and I was forced onto the government catastrophic health plan for people with extreme drug costs. That was means-adjusted, and I had to pay about $6,000 a year. Our budget was really hurting, to lose that much disposable cash. On the other hand, US insurance premiums can be very high, which would be the same difference or maybe even more expensive.
Our friends in Australia have government coverage for drugs, but it is very very difficult to convince the powers to let you have some. Our friends @MacMac and @Becstar will attest to that.
It’s a good question. Of course, not much to do with Rob3. Sorry, I went OT, Rob.
I had little to no response to MTX, then a good response to both Enbrel and Humira (still doing well on Humira - 4 years now). Enbrel and Humira have a very different mechanism of action to MTX, so it doesnt seem to be relevant whether you respond to MTX on how you will respond to either of these.
Like Seenie, I went with Enbrel first probably because it had been used for a bit longer, but also because it addresses less of the extra-articular symptoms than Humira (yes - you read that right - less - I’ll see if I can explain the logic).
The theory suggested to me by someone more experienced in these things at the time was that biologics (and indeed any DMRD) often have a limited effective life for us, then we move onto the next one. Hence, as I (thought I had) no extra-articular disease at the time, I may as well use the one that doesn’t address other extra-articular disease (eg Uveitis) first, allowing me the others to move onto if either the Enbrel started failing for my arthritis, or other symptoms turned up, or both.
In my case it turned out that because I was on low-dose steroids (which were masking other issues) at the time of making the decision, I did actually have other things that progressively worsened as the steroids were tapered off, so my move to Humira was pretty swift. But the Enbrel was great for both my arthritis and frame of mind.
Thank you all for the responses, it gives me some renewed hope that I might actually get some relief! And I enjoyed your post poo, just hearing anything from others experiencing this disease makes me feel not so alone in this battle. Don’t get me wrong, my wife and kids have been very understanding and supportive, but most days I feel like no one I interact with daily has a clue of the war that is raging within my body because I look “fine” on the outside and I don’t have the patience or energy to try to explain it. Oh the irony in that…
It’s been over a year now since I was first diagnosed and with the lack of improvement in my symptoms thus far and the increase in fatigue lately, it has been really hard to be positive and see any hope of feeling “normal” again, so just talking and venting about it here really helps!
I’m on my iPhone and can’t do the quote thing, but Janeatiu mentioned me in connection with Enbrel because she remembers how well and fast it worked for me…I’m just about 3 years in and it’s still working (don’t mind, I do have complaints but I don’t feel anywhere near as shi**y as I did before I started Enbrel)!
In the *SA (I stopped putting the U in because we’re so divided here these days - I’m hoping that changes eventually ) like a couple people mentioned, as long as you’re on private health insurance there’s Enbrel Support…you need it unless you can pay the ridiculous out-of-pocket! I
work for the state of MN and we have BCBS and I’m covered. If I go on Medicare at 65, I won’t be able to get Enbrel coverage anymore because I think Medicare only covers Remicade…I’ll keep working as long as I can JUST so I don’t have to switch to Remicade because I think I prefer the shots at home rather than infusions. Some people have mentioned icky SEs from Remicade.
That brings me to why I chose Enbrel…Enbrel and Humira are similar…you take Enbrel once a week and Humira e/o week. I figured If I did get SEs they’d only last a week vs two weeks from Humira. Haha, fear of throwing up, etc…there were no SEs!!! I’m sure there would be none with Humira, either!
Good luck, Rob3!!! I always hope newbies to biologics get the phenomenal results I got from Enbrel!!! Oh, and I only pay $10 a month!!!
It so does Rob, truly it so does help, chatting on here. One thought you might get a ‘holiday’ on relatively low dose steroids assuming your doctor thinks they’re a good idea for you. For me they’ve been essential in remembering how nice no pain and little fatigue feels like in the past year like you that I’ve been diagnosed. They don’t suit everyone, come with risks as always, but often can if that’s all in order give you just some capacity capability breathing space which emotionally for me has helped enormously. That’s given me the impetus first to just get my head around all this (remember too I can be such a temper tantrum drama queen too) and to just carry on trying to find a drug that can help better. And the energy to do all of that too. I’m no doctor either so this is just what my own experience has been like. My mother needed them for other reasons and they gave her ‘roid rage’ which was utterly horrible for her and anyone near her so as I said they come with risks. Just my thoughts.
- I’m hoping that changes eventually 
) like a couple people mentioned, as long as you’re on private health insurance there’s Enbrel Support…you need it unless you can pay the ridiculous out-of-pocket! I