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Medical Forum / Diseases and Disorders / Arthritis / October 2006New Enbrel RX question
Hi guys, I post on here on occasion but mostly lurk. Need to come out of lurking for a bit to ask a question. My doc and I are pretty much convinced that I have ankylosing spondylitis now due to definite degeneration of my cervical vertebrae. I saw her on Friday and she gave me a new rx for Enbrel. She told me that the pharmacy would tell me what forms I'd need to fill out or what hoops to jump through and if I needed anything from her office to let them know. Based on what I read here, I also expected a few hoops. I told her that my GP was treating me for a chronic sinus infection right now, and she told me that it was important to get that cleared up before starting the Enbrel. But she felt that it would take a couple months to get the Enbrel in my hands anyway, so go ahead and get started on it. I put the rx in at the Safeway pharmacy on Friday. They said that my insurance does cover it (BCBS ppo) but they needed to special order it. No problem, says I. Got a message on my cell phone this morning... my Enbrel is in. I can keep it in the fridge for a month, of course, but this was just too easy. Do I have an especially good insurance? Do the delays come from the EnbrelAssist financial aid thing? My doc gave me info on that, but I didn't get a chance to call and ask about it. I'm afraid that BCBS might send me a letter in a few months telling me I did something wrong and now owe them $$$$$, so that's why I want to ask here. Any speculation or opinions? - Sharon "Gravity... is a harsh mistress!" "Sharon" <frey@encompasserve.org> wrote in message > Hi guys, I post on here on occasion but mostly lurk. Need to come out > of lurking for a bit to ask a question. My doc and I are pretty much > convinced > that I have ankylosing spondylitis now due to definite degeneration of my > cervical vertebrae. I saw her on Friday and she gave me a new rx for > Enbrel. Not to wander too far off from your original topic but depending on the progression of your AS don't expect miracles from the Enbrel. I've been on Enbrel for 2 years now and am fully fused from the top to the bottom of my spine. I inject 50mm weekly but it still hasn't stopped the spread of the AS from getting into my shoulders and arms. Your best Rx is mild exercise and/or daily activity. I take Tramadol and naproxen sodium as necessary for the pain but keep the dosage amounts as small as possible. Good luck. Sluggo > "Sharon" <frey@encompasserve.org> wrote in message > [quoted text clipped - 14 lines] > > Good luck. Thanks for the info. I've been on NSAIDS for almost ever to deal with aching from leftover damage from JRA. I was wondering if it would morph into some other degenerative disease when I got older, so this is my answer. :-( I read that the Enbrel works in clinical studies for 3 out of 5 AS patients, so it's worth a try. I'm also going to do exercise for it, though, and I have an orthopedic surgeon also keeping a close eye on me. For the past couple of years my RD thought for sure that I was going to get in a fender-bender and go quadriplegic, but so far I'm not in any unusual danger of that. But it's definitely progressing. Two years ago I had 2 fused joints in my neck, now I'm up to 4. Ugh! - Sharon "Gravity... is a harsh mistress!" "Sharon" <frey@encompasserve.org> wrote in message > Thanks for the info. I've been on NSAIDS for almost ever to deal with > aching from leftover damage from JRA. I was wondering if it would morph [quoted text clipped - 12 lines] > joints in > my neck, now I'm up to 4. Ugh! Hello, I'm totally fused too and also taking Enbrel. I was diagnosed in 1996 at 47 and got on SSDI 2 years later. Started Enbrel about 2 years ago. At this point I'm still taking the Enbrel as a preventative med hoping it slows the spread of the disease somewhat. AS seems to spread faster the more immobile you are. Keep moving, keep active no mater what it is you are doing. Ignore the pain as best you can and watch out for the nsaids. Keep your intake as low as possible to prevent damage to your system. As far as driving is concerned, I don't think there is a single RD out there who isn't concerned about his/her AS patients behind the wheel. I have zero movement in my neck and use a portable mirror when driving. . Freaks out passengers but so far (knock on wood) no accidents. I only make right turns, U-turns and no left turns against traffic at all. Sounds crazy to those who can move their necks but to those of us who can't, it makes perfect sense. I also drive a full-sized Ford Van which gives me a better view of the road and much better protection then my little Chevy Cavalier ever did. Got handicapped plates too so I get all the good parking spots at WalMart. At 55 I found a new exercise that is fun and dangerous (according to my RD). ATV or quad driving. It's great exercise and you don't have to go fast to enjoy it. Yeah, I know, most think I"m nuts but when I'm put-putting down a dirt road at 5 to 10mph with the wind blowing in my face, I completely forget I'm totally fused. It's a liberating feeling. Plus just pushing the thing around with the engine off is great exercise for your lower leg muscles as well. Even when you drive the thing you are exercising just about every muscle in your body. It's way fun! Bill in Nor Cal > Hi guys, I post on here on occasion but mostly lurk. Need to come out > of lurking for a bit to ask a question. My doc and I are pretty much convinced [quoted text clipped - 20 lines] > - Sharon > "Gravity... is a harsh mistress!" Opinion only: If you are worried about it, why not call BCBS and ask them? I did that when my Enbrel had been covered (oh if only it still worked for me) for $9 per month. I just *knew* that there had been a mistake. Called my Rx plan and was told that no, there was no error. Some insurances may want to speak (or email/fax) with the doc about what else you've tried, but I would think there would have been a hang up before it was approved to be given to you (at the pharmacy). Make certain that you speak with someone who actually has the authority to approve your Rx. I've been "lucky" so far, that none of the stuff has been denied, nor have I been billed for any extra/unexpected costs. Hoping, really hard, that all is as it should be and that the Enbrel works for you. Smokie Darling (Annie) > Opinion only: > > If you are worried about it, why not call BCBS and ask them? I did > that when my Enbrel had been covered (oh if only it still worked for > me) for $9 per month. I just *knew* that there had been a mistake. > Called my Rx plan and was told that no, there was no error. Thanks, that's a great idea. I'll give them a call tonight after work. The pharmacy told me the copay would be $100, so it's not as dramatic as yours, but the lightening fast timing is definitely a red flag. > Some insurances may want to speak (or email/fax) with the doc about > what else you've tried, but I would think there would have been a hang > up before it was approved to be given to you (at the pharmacy). Yeah, that's what I expected too. Not "here you go, have a great day!" haha! (And here I seem to be complaining about getting good, fast service for once!) - Sharon "Gravity... is a harsh mistress!" the phone number should be on the back of your bcbs ppo card. i was going to suggest the same thing that annie did. i don't think it's a mistake, either. they are usually very quick to nix something they don't cover. (i have bcbs regence ppo.) good luck, hon. kate In article <1161024529.556181.47840@m7g2000cwm.googlegroups.com>, "Smokie Darling (Annie)" <Barnabus1993@yahoo.com> writes: > Opinion only: > > If you are worried about it, why not call BCBS and ask them? I did > that when my Enbrel had been covered (oh if only it still worked for > me) for $9 per month. I just *knew* that there had been a mistake. > Called my Rx plan and was told that no, there was no error. Thanks, that's a great idea. I'll give them a call tonight after work. The pharmacy told me the copay would be $100, so it's not as dramatic as yours, but the lightening fast timing is definitely a red flag. > Some insurances may want to speak (or email/fax) with the doc about > what else you've tried, but I would think there would have been a hang > up before it was approved to be given to you (at the pharmacy). Yeah, that's what I expected too. Not "here you go, have a great day!" haha! (And here I seem to be complaining about getting good, fast service for once!) - Sharon "Gravity... is a harsh mistress!" > the phone number should be on the back of your bcbs ppo card. i was going > to suggest the same thing that annie did. i don't think it's a mistake, > either. they are usually very quick to nix something they don't cover. (i > have bcbs regence ppo.) good luck, hon. > > kate Ok, a followup question: do any of you guys use the autoinjector thingie? Is it called a "Sureclick"? That's the version that my doc showed me and scribbled on the rx, but the pharmacy got me the regular syringes. I took them (what the heck, I'm tough) but plan to ask for the Sureclicks when I have them order next month's doses. I'm curious if those cost more than syringes, and maybe that's why my price was "low". - Sharon "Gravity... is a harsh mistress!" In article <XZmdnb1Xa9UKYa7YnZ2dnUVZ_s-dnZ2d@comcast.com>, "d'huit" <threecedars1@comcast2.net> writes: >Ok, a followup question: do any of you guys use the autoinjector thingie? Is it called a "Sureclick"? That's the version that my doc showed me and scribbled on the rx, but the pharmacy got me the regular syringes. I took them (what the heck, I'm tough) but plan to ask for the Sureclicks when I have them order next month's doses. I'm curious if those cost more than syringes, and maybe that's why my price was "low". - Sharon yes! i believe there is a post or two from rhonda about that very thing. i'm going to search for it . . . ok. check out rhondaM's post on this group for the date of sept. 22nd. kate "Gravity... is a harsh mistress!" I'm really not interested in trying the Sureclick. From what I understand, it injects all the medicine at once, at its own speed. For me, the injections usually sting some (sometimes not at all, and sometimes terribly!). I've always dealt with the stinging by, as my RD's nurse suggested, pausing unitl the stinging eased, then continuing to inject until I need to pause again, etc. I had enough stinging from allergy injections in the past that I don't mind *some* stinging as long as the injection is under my control. But I fear the auto-inject would have me hitting the roof, esp. if I happened to be near a nerve as I sometimes seem to be. BTW, the regular syringes really are easy to use. I was surprised at how easily it slid in. My brother, who's been injecting insulin for almost 40 years, tells me it's the modern silicone-coated needles that makes it so easy.  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare > Ok, a followup question: do any of you guys use the autoinjector > thingie? Is it called a "Sureclick"? That's the version that my doc showed [quoted text clipped - 9 lines] > - Sharon > "Gravity... is a harsh mistress!" "Nann Bell" <hanbellGOGATORS@earthlink.net> wrote in message > I'm really not interested in trying the Sureclick. From what I > understand, [quoted text clipped - 15 lines] > years, tells me it's the modern silicone-coated needles that makes it so > easy. Same opinion here, allow syringe to reach room temp, inject, pause till stinging stops, continuing injecting till done. That's for the weekly pre-mixed 50ml injections. I remember my twice-weekly, mix em yerself 25ml injections were not as painful stinging wise, I was told that was because the was a variation in formula content. I'd still rather inject once weekly and put up with a little stinging rather then inject twice weekly however. And ditto on the modern silicone coated needles. I can remember all to well the pain of getting injections when I was kid back during the " black and white " years. (son's description of the way things were back when I was a kid) > In article <1161024529.556181.47...@m7g2000cwm.googlegroups.com>, "Smokie Darling (Annie)" <Barnabus1...@yahoo.com> writes: > [quoted text clipped - 6 lines] > The pharmacy told me the copay would be $100, so it's not as dramatic as yours, > but the lightening fast timing is definitely a red flag. Hey, I'd have taken that copay too. My pharmacy told me that if it hadn't been covered, I would have had to come up with $4400 per month ($1100 per syringe - yee Gads!). My "primary" insurance refused to cover it (or Humira) *at all*. I do hope that kate is right, and that's all you'll need to pay. I seem to remember BCBS being very quick with denials of coverage... Crossing what I can for ya! > > Some insurances may want to speak (or email/fax) with the doc about > > what else you've tried, but I would think there would have been a hang > > up before it was approved to be given to you (at the pharmacy). Yeah, that's what I expected too. Not "here you go, have a great day!" > haha! (And here I seem to be complaining about getting good, fast service for > once!) Innit great? We are so used to being "slapped around" by our insurance companies that when we aren't, it's a shock! > - Sharon > "Gravity... is a harsh mistress!" Love the sig Smokie Darling (Annie) > Hey, I'd have taken that copay too. My pharmacy told me that if it > hadn't been covered, I would have had to come up with $4400 per month > ($1100 per syringe - yee Gads!). My "primary" insurance refused to > cover it (or Humira) *at all*. I do hope that kate is right, and > that's all you'll need to pay. I seem to remember BCBS being very > quick with denials of coverage... Crossing what I can for ya! $4400 per month!!!??!??!?!!!?! My shipments of Enbrel from Medco have their price and how much I'm paying on the slip. They charge $1300 and change (my co-pay is $40) for a four syringe box. I've done some nosing around on drugstore.com and the ilk and that seems to be the ballpark figure for 4 pre-filled regular sringes of the golden elixir. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare $4400 per month!!!??!??!?!!!?! My shipments of Enbrel from Medco have their > price and how much I'm paying on the slip. They charge $1300 and change (my > co-pay is $40) for a four syringe box. I've done some nosing around on > drugstore.com and the ilk and that seems to be the ballpark figure for 4 > pre-filled regular sringes of the golden elixir. Don't doubt that a bit. I'd go to another pharmacy, but this one delivers (the day I order), they are local, and they gave me an account so that I can pay my bill when the disability comes in. The Pharmacist has said that the place he orders from tends to charge more for a single order (one month of Enbrel) than for bulk orders, and I was the only person in town, or this side of the valley, that used it. Anyway, I'm on Orencia and Imuran now, and they seem to be working (touching wood). > -- > Nann > remove the Gator cheer to email me > Simply the thing I am shall make me live --- William Shakespeare Smokie Darling (Annie) > I can keep it in the fridge for a month, of course, but this was just > too easy. Do I have an especially good insurance? Do the delays come from [quoted text clipped - 7 lines] > - Sharon > "Gravity... is a harsh mistress!" Sharon, our insurance is through BCBS of Michigan. Of course, plans vary, but on ours my Enbrel was covered just as easily and simply as yours was. I'm coming up on 2 years on it and no problems or questions about it from BC yet! (a few disagreements over other things, but not on the Enbrel! lol) I must admit, it was a real joy after waiting for 3 years to get prescription insurance that would allow us to put me on something so expensive! SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare In article <0001HW.C15E3727000B571A118C0720@news.east.earthlink.net>, Nann Bell <hanbellGOGATORS@earthlink.net> writes: > I'm really not interested in trying the Sureclick. From what I understand, > it injects all the medicine at once, at its own speed. For me, the [quoted text clipped - 10 lines] > years, tells me it's the modern silicone-coated needles that makes it so > easy. Hi Nann, thanks for your opinion on that. The way my doc described it, I think you're right. You hold down the button and it automatically pushes the med into you until it's empty. Are you saying that the Enbrel itself stings a bit and not just the needle stick? I'm glad to know that. I may decide to use your approach after I try it, and not use the Sureclick either. I don't expect to have problems with self-injecting. I took several pre-pre-pre-veterinary classes in high school (lo these many years ago) which included hands-on injecting animals. So I know how to handle a needle. Of course I realize injecting yourself adds a dimension... :-) Although hopefully I won't squeal like the piglets used to. - Sharon "Gravity... is a harsh mistress!" In article <0001HW.C15E372D000B5857118C0720@news.east.earthlink.net>, Nann Bell <hanbellGOGATORS@earthlink.net> writes: > On Mon, 16 Oct 2006 23:41:11 -0400, Smokie Darling (Annie) wrote > (in message <1161056471.738890.35490@f16g2000cwb.googlegroups.com>): [quoted text clipped - 11 lines] > drugstore.com and the ilk and that seems to be the ballpark figure for 4 > pre-filled regular sringes of the golden elixir. I checked my prescription plan after posting the original note here, and found that my copay is $20 or 10%. So that's why the copay is $137. When I told my hubby it was 10%, he did the math in his head and his eyes bulged. I sure hope this stuff is worth it! Also, I was reading the profuse documentation that I got for my rx. On one page where it describes how to inject, it says to pull up on the... ack, I can't think of the terminology. Basically after you push the needle in, you suck in a tiny bit to see if you get blood, which means you hit a vein, and if not then you can proceed to inject. The book says that if you do hit a vein, you should pull the needle out and throw it away and start over with a new syringe. WTF? As expensive as this stuff is, you think I'm going to throw away a dose? I know you're not supposed to reuse needles, for extremely good reason. I think what I might do instead, is just pull the needle BACK a little bit, out of the vein. - Sharon "Gravity... is a harsh mistress!" |
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