I am having a rough time right now! Enbrel worked great for me–but my insurance didn’t cover it so well. I ran out of funding to pay for it and couldn’t afford the $1,500 a month out of pocket. Been on Methotrexate injections (20 mg) , Celebrex (200mg daily), and folic acid alone since the last of November. Worked fine for a while, but now I am in bad shape. My knees are the only joints not inflamed, and my right one is starting to hurt on stairs. Work stress is at an all time high as I teach 3rd grade and high stakes testing starts in less than a month and a half. Plus third person evaluating me in three years so I have to prove every thing I do yet again. Unscheduled walkthroughs with notes for my eval, aauugghh!
Since insurance from school didn’t work out so well covering PsA meds, I went back on my husband’s policy, which is expensive. Had them run new insurance to see how much Enbrel would be out of pocket, and they won’t even cover it until a list of three different other medications have been tried and failed. Doesn’t matter that I have failed on other meds and Enbrel works. My husband looked into it before we committed to the new policy and it looked like it would cover Enbrel. Waiting on rheumy to figure out what to do next. Meanwhile I am struggling. It is hard on my family–I feel like I just look lazy and only work on my school stuff- I work late every day in part because it just takes longer to do things with this disease. No energy for anything at home really. I do still work out, or at least try to, twice a week. Don’t know how to get through this positively for the next month or two until this flair gets remedied.
I'm no expert on the US system but I'm pretty sure other members here get financial assistance from the manufacturers ... here is a link I just located https://www.enbrel.com/support/financial-assistance/
Good luck checking this out and hope, in the meantime your flare settles.
Hi Zinnia! I see you live in Florida, and I was wondering if you ever checked into "Enbrel Support", because it will help you pay a lot of the cost. I pay $10 a month for my Enbrel--my insurance has a good-size deductible, which Enbrel Support covered.
Also, it's easier to get Enbrel if you go to not only your rheumatologist, but a dermatologist, too. I had a diagnosis of moderate PsA for several years but refused the usual meds. I had moderate psoriasis for 37 years and had used topicals and light therapy and they weren't stopping my psoriasis. For some very weird reason, it's easier to get Enbrel through a dermatologist. She had to include my rheumy's notes and PsA diagnosis, but she actually got me Enbrel 50mg 2x a week for the first three months!
I hope you can get back on Enbrel and not have to pay that huge copay!!!!
Thanks, Jules G and Grandma J, for your replies. I feel so isolated. I have Enbrel support, but when my insurance only paying half the cost, the whole $8,000 (I believe that is the amount) was exhausted in only six months, and then it would cost me $1,500 a month to continue. That’s another mortgage payment!
Grandma J, I am extremely fortunate to have very limited psoriasis, and what little I have had responded quickly to topical medication my rheumy gave me. I do currently have what my rheumy believes to be rosacea on my face and I go to my first dermatologist appt in a couple of weeks. It hasn’t responded to the cream.
I just want to get back to where I was four months ago when I was feeling at least close to normal.
So sorry to hear this, Zinnia. And from now until the end of the school is a marathon, isn't it? You need to take care and pace yourself, which I know from experience is easier said than done.
About your insurance pickle: our mod GrumpyCat has a really good article she did --
Grumpy is a real whiz at this stuff, and has good perspectives on insurance issues too. Send her a PM and I'm guessing you'll be glad that you did. Tell her Seenie sent you. *wink*
Seenie, I have the copay assistance card for Enbrel. I paid nothing for five months. It was fantastic–until it ran out. My insurance only paid for half the over $3,000 a month Enbrel cost. The copay card paid the rest. There is a cap of $8,000 a year on the copay card. It was gone in less than 6 months and I cannot reapply until April. I was really trying to make it until that time, but cannot. Trying to figure out what the next step is for me.
It is the craziest, most stressful time of year for me. In the high stakes testing environment currently in education and so much focused on third grade in particular it puts me at a disadvantage. It also makes it very hard to pace myself, although I did take off Thursday to rest. Now I am paying for that by working this weekend, lol. C’est la vie! I cannot wait until this is all worked out and I am back to “normal”.
Hi Zinnia,
I'm in the UK so I'm no help re. insurance. But I understand the pressure you're under all too well and want to send you best wishes. I stopped teaching in 2012 and was diagnosed within months, I'm not sure how long I'd had PsA for - too long I'd say. The regime here is similar, schools are high stress environments anyway and more so at certain key times. Please don't be too hard on yourself, you are not lazy, you're doing brilliantly in the circumstances.
Zinnia said:
Seenie, I have the copay assistance card for Enbrel. I paid nothing for five months. It was fantastic--until it ran out. My insurance only paid for half the over $3,000 a month Enbrel cost. The copay card paid the rest. There is a cap of $8,000 a year on the copay card. It was gone in less than 6 months and I cannot reapply until April. I was really trying to make it until that time, but cannot. Trying to figure out what the next step is for me.
It is the craziest, most stressful time of year for me. In the high stakes testing environment currently in education and so much focused on third grade in particular it puts me at a disadvantage. It also makes it very hard to pace myself, although I did take off Thursday to rest. Now I am paying for that by working this weekend, lol. C'est la vie! I cannot wait until this is all worked out and I am back to "normal".
Some of the drug companies have support for underinsured patients beyond just copay cards. It would help to call.
Also, your doctor can appeal the denial of coverage with your new insurance. That often helps. He may need to write the insurance company and tell them why you need Enbrel now rather than later.
Thanks GrumpyCat! I had no idea! I know Humera is one of the four drugs that has to be tried and fail, so hopefully I can move to that as a long term solution. It just stinks right now. I hurt everywhere and the work stress is getting to everyone, and has even worse consequences for me.
Zinnia, like Sybil, I’m a retired teacher. I retired because I … just … couldn’t … anymore. I was stiff, I was sore, I was exhausted, and I was needing a knee replacement. I was SO DONE. I was also undiagnosed, and I remained undiagnosed for another five years after I retired. Then it was another two years before I found a doctor who recognized that my PsA was severe, and that I needed a biologic. That turned my fortunes around and changed everything. Enbrel got traction, and I was able to recover some of the fitness that I had lost over the previous ten years or so. By that point, I once again had the physical and the mental health required to teach. But also by that point, I’d also lost my knees, my hips, and (crucially) the painless use of my feet. And I no longer had a job to go back to.
Whatever it takes to control this disease, Zinnia – appeal letters, a lawyer, a temporary medical leave, the intervention of your union – needs to be your priority. If you try to fight PsA without the medical intervention that you need, while trying to carry on doing the demanding and stressful work that you do, I’d worry about your losing on two (or more) fronts. I’m sorry to be so blunt, but I’ve been there, and I was a victim of a train wreck wreck just like that. I don’t want to see it happening to you.
Seenie
PS I’m not sure that Humira is one of the drugs that you have to fail. More likely, the insurance will want you to have tried three of: methotrexate, sulfasalazine, hydroxychloroquine or leflunomide. These are the “regular” (and inexpensive) DMARDs. SSZ and HCQ can be trialed simultaneously, but each trial normally lasts three months. That means a delay of at least half a year if you go the “normal” route of fulfilling the insurance requirements. From a health and career point of view, I don’t think that you can afford a delay like that.
Seenie, surprisingly Humera is one of the drugs–and I had the opportunity to choose Enbrel or Humera and chose Enbrel. And metho isn’t one of the drugs I have to fail. I need a list of the drugs. Of course I was dismissing my class when my rheumy’s office called and I called back on the way back to my classroom for a parent meeting.
I also have an aggressive form of the disease, according to my dr. I am struggling to figure out how to continue to teach–which I love despite the challenges. I just can’t imagine not teaching, although right now I am teaching with a wrist brace, an ankle brace, and athletic shoes.
I am worried about the disease progressing while I am waiting for things to work out. The pain isn’t really unbearable, just constant with shooting pain depending on my movements. And the fatigue.
It is nice that I have former teachers for advice. Hopefully things will get worked out quickly. If not I have some hard decisions to make.
Well if Humira is one of the drugs, I’d say go for it! It, like Enbrel, is a biologic anti-TNF agent. What I don’t understand is, Humira is every bit as expensive as Enbrel. Take it! Enbrel pooped out on me after two years, and I’ve switched to Humira with good results.
Call your rheumie back, and if it really is Humira that you have to fail, go ahead and give it a go. If you don’t fail iit, you win!
Seenie, today I got a call from my pharmacy about my new prescription–didn’t know I had one. Apparently I am going to start Humira soon! Still waiting on everything to go through, but sounds promising!
While I am crazy excited to think about getting back in remission, I do wonder how long Humira will work and if Enbrel will work later on when I need a new biologic. I want to get back to where I was just three weeks ago.
Thanks for your insights. This site has been an incredible resource! The only people who really understand what I am going through. I know we all have different stories, but it really helps to have people with the same frame of reference. Even my husband, who is incredible, doesn’t really understand the constant pain, and no one realizes the fatigue and how it is different, more limiting, more all-consuming than normal exhaustion.
I started working out and eating better when diagnosed over a year ago. Now I look better–25 pounds lighter and more muscle mass than I’ve ever had, so people don’t realize how I am feeling. And it is bad right now.
Zinnia, what great news! Let’s hope that Humira takes over where Enbrel left off. It’s a worry, I know, but the two medications work on the same target protein, although with different mechanisms. If Enbrel worked, you stand a very good chance with Humira. Think positive. What you are going to do after Humira is a worry for another time.
Ben’s Friends communities are very special, aren’t they? There really is nothing as supportive and reassuring as connecting with people who can say “I know, I’ve been where you are”. I remember the feeling of relief, and then strength, which I gained from finding this wonderful place and feeling the support of the good people here. We really are in this together, Zinnia.
Take very good care, and let us know how things are going for you.
Zinnia: I've been injecting Humira for over three years. I *love* it because it helps with the pain and fatigue. One thing I did want to say is your rheumy may start you out at injecting every 14 days. That length of time between dosages may not be the optimum for you. After reading something in this group, I talked to my rheumy, who agreed that I could try injecting every 10 days. We quickly discovered that every 10 days is the optimum for me. Thankfully, my old (and new) health insurance companies both agreed--and pay for--me to inject in that length of time.
When I saw him in December, my rheumy said if we see that every 10 days is not as effective, he does have some patients who inject every week. He's willing for me to try that before we switch to something else.
What I'm saying is I agree with Seenie about wondering what you're going to do after Humira is for another time. Before you go that route, talk with your rheumy about a trial of injecting every 10 days and/or every 7.
One more thing, Abbvie (the folks who manufacture Humira) also have a cost reduction plan. I pay $5.
I'm a weekly Humira user. It was life changing to alter the frequency of the dose.
One of the differences between Enbrel and Humira is that the frequency of Humira injections can be adjusted, where as Enbrel is every two weeks. You might want to speak to your rheumatologist about more frequent injections when you first start.
Glad that there is a light at the end of your bleak medication tunnel. Let us know how it goes.
I had wonderful results with humira for several years before it failed me. I was so sad to move on from it. Hopefully, you’ll have good results too; in fact, it’s not very often that someone comes on here and says they’ve had a bad time with humira. If I could go back on it and get the same outcome, I would.
They also have patient support in addition from the copay cards. It’s expensive, like Enbrel (ands all of the bios for that matter), so help when insurance fails is essential.
The drugs I have to fail before I can take Enbrel again are (these are preferred drugs): Cimzia, Humira, and Simponi. I am STILL waiting on pre auth on Humira. Hopefully soon! REALLY struggling right now.
Well, that is a GREAT first choice! Best of luck, you are on the re track! Now if the paperwork would just move faster…