Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Calling all Enbrel users, past and present!

Hey all you AS geniuses out there! (It's a compliment, honest!)

I have recently been inducted into the Army of Brave AS Warriors (in more boring terminology: diagnosed 3 weeks ago) and just started on Enbrel 2 days ago. I was wondering what your experience with Enbrel has been? Things I would love to have us discuss here:

Your side effects?
How long was it effective, or maybe still is.
Do you prefer vial or sure-click?
If you are new to it, are you using their assist program for the co-pay?
What other drugs do you take along with it?
Any tips on making the part where I stab myself in the stomach to take the darn stuff a litte easier?

Positive Self Talk: "I am a WARRIOR!"


Just anything Enbrel related. I feel like a kid on the first day of school in a new city. Lost.

Thanks in advance.
Donette

I have been on Enbrel for almost 6 months. Still amazingly effective. My only side effects have been injection site reactions (which are very scary the first time; mine were about 4" diameter, hot, red & itchy/painful) & occasional nausea/vomiting the night before injection. I have used sure-click & syringe; prefer sure-click. I did not qualify for any assistance (you can check out my post on this topic about 6-7 months ago). I take diclofenac & tramadol along with my enbrel.
Best tips: let it warm up for 15-30 minutes; numb injection site with ice; try your thighs.
Enbrel has been a life saver for me. Eight months ago I was considering dropping out of medical school b/c I couldn't sleep b/c of pain, couldn't concentrate b/c I couldn't sleep; was doing poorly in school b/c I couldn't concentrate. To contrast this: in January I ran a marathon with no training and felt fine afterward (I hung a closet organizer & studied for several hours).
Welcome to the biological babes!
Trish

Hi there..
I'm starting Ebrel in about two months so i'm as apprehensive and excited as you! I've been searching for the same answers and pretty much getting the idea of what Enbrel could, should and will hopefully be. In Australia we are really lucky with the medicare public system as far as biologics are concerned, if after six months of traditional treatment ie two different nsaids and completion of an excercise stretch regime is deemed inaffective by yr specialist you get approved for enbrel, humira or remicade. I'm not sure what the exact cost to the patient is maybe about 80 dollars a month. Reading all these stories about insurance companies and co pay schemes is really upsetting. I guess you guys could move to Oz! The climate is good for AS! Seriously though, when you are debiltated from a disease like AS or RA, it's not like you're likely to have an executive income to cover 25 large a year?? I'don't know sounds crazy over there. Does any one know what the chances of biologics becoming cheaper is? I guess the pharm companies will milk the profits until the next treatment comes along. So anyways I'm a new kid on the block too Donette and I'm scared too cause I should have another 50 years left in me, the problem I struggle with is can I do 50 years with AS? (gotta get my inner warrior happpening) I'm really excited about enbrel stories too.. I need my life back or I'm not sure i've got one.
later and cheers
Rob

Welcome Grasshopper (keeping within the warrior theme)

I've been on Enbrel for nearly two months now.

Biggest tip, as already mentioned - let the syringe warm up at room temp for half an hour first. It stops it stinging.

I used the pen with Humira, and don't really like it. When it activates it makes me jump and creates two holes!

With tbe Enbrel pre-filled syringe, I just rest it on my skin (stomach) and slowly apply pressure. It gently inserts itself and there is no pain. Easy. And I'm a BIG (needle) WUS.

Apart from nausea for the first six weeks, that I can't prove is the Enbrel, have had no side effects.

It has provided very little relief, although it may have taken a layer of pain away. It is so marginal, I just don't know.

Hope it does more for you, oh, and it may take months before it does.

All the best,

James

That's awesome Trish!

I started enbrel in 2003. It took about a month and a half to start working for me, but once it started I had no more pain. It was great. After about six months I started feeling dizzy. I had a hard time running, because my right foot was not hitting the ground correctly, and kept getting worse. I went to the neurologist had several tests done. I have MS. The enbrel didn't give me MS, it just made it more noticeable. Once the enbrel left my system the MS calmed down. I ran a marathon last October. I take an Avonex shot for the MS every week. It is much worse than the enbrel shot. The shot goes in deeper, and then I have flu like symptoms for 24 hours after the shot. Don't be afraid of MS. It is rare. Just keep an eye out for it.

Hi Donette...I was on Enbrel back in 2003-2005, I loved it! I got excellent results and the only side-effect that I can recall is that my throat was persistently hoarse, it didn't hurt but it always sounded strained. I'm going back on Enbrel in a week and I can't wait! Good luck...

Hey Donette
Well, Welcome to our little club..

My experience with Enbrel is that while it does cut the immflamtation it does very little for the actual pain level.

I still go with the old fashioned way, I mix my own 25mg vials. I tried the 50mg when it came out in pre filled syringes and I am pretty sure that the company had someone on the payroll who's job it was to blunt the needles. Sometimes I thought I was going to have to get a hammer and drive the needle in. I haven't tried the new auto-injector.

I get mine through a home health agency. This way my insurance looks at it as a treatment instead of a medication and pays 100%

I generally give myself my shots in the thigh, its handy and seems to be the least painful of the places I have tried.

I have been on Enbrel for several years, on and off MTX, also take Flexeril, and Sulindac.

Keep Kickin'AS
Chris

I've been taking Enbrel for about one month, so just did my 5th shot yesterday. Already it has helped noticeably in the enthesitis in my hamstrings, my SI pain, and my feet some. I still have some low back stiffness and some foot/toe pain, but I have taken exactly one NSAID pill in the last month, so I can't really complain. Right now Enbrel is my only medication, and I am pretty comfortable and do things like run. With my insurance plus the Enbrel assist plan, I pay $75/month.

I use the sure-click pen for injections, and don't find it terribly painful. I don't have anything to compare it too, but I don't dread it or anything. I do take it out of the fridge about 30 minutes before the injection, and I alternate injection sites each week. Both belly and thigh feel about the same for me. I have not had any sort of injection site reaction or any weird side effects. I did get a cold earlier this week, but that was after my wife and baby had it for 5 days prior. I was actually a little surprised it took me that long to get it. And then it was pretty much gone in only 2 days, thanks to massive doses of Emergen-C. So I can't say it lasted longer than a normal cold (actually, it was a little shorter).

I hope it stays effective for me for a long time. I also hope that I'm not seeing the full effectiveness yet, as I am greedy and want more.