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

Hi Donette,

I was on Enbrel for about 1-1/2 years. Had a very quick response with it for my spinal issues & fatigue. It worked a bit less effectively for my peripheral issues. I used the 50mg pre-filled syringe. I had to apply for copayment assistance through outside agencies - my insurance only paid 70% of the cost leaving me with $434/month copayment. I never had any bad side effects - even my skin reactions were mild (much more severe with Humira). I did get a nasty headache for 1-2 days after my shot though with Enbrel. I've always injected in the thighs - the stomach hurts me more to inject.

I switched to Humira because the Enbrel was working less & less - and like I said, it wasn't very effective for my hands at all, which have moved front & center once again. When I was on Enbrel, I took Methotrexate for most the 1-1/2 years with it but my liver won't tolerate it now. I've been on Sulfasalazine with both Enbrel & Humira. I also take Plaquenil now and my latest nsaid is Sulindac (again).

I hope you have great success with it!

Lost is a tv show where survivors of a plane crash have to cope with living on an uncharted island....hmmmm...sounds like our diagnoses with AS! Maybe that's why I like the show...I crashed, I survived, and am dealing with my new life...and for the past four years I've been on Enbrel, and it has given me a second chance....I could not get out of bed, put on shoes, etc., and tried everything....but a biologic stopped the inflamation...which stopped the pain...and I got out of bed and could make it to work...
I do the shot in my thighs....straight in...my doc said it was ok, and it worked...
I quit other drugs except occasional Advil....don't need them...no methotrexate or sulfasalazine...don't need them...

I have been on Enbrel for over four years....I get blood tested every couple of months and so far so good...

I hope it works for you, it gave me back a somewhat normal life!
Peace
Linc

Hey Donette! Is it working yet? How are you doing with it? I'm really interested to hear, so please update us.
I was on enbrel for roughly 4 years, I think, but it gradually wore off starting at the 2 year mark. It can last much longer though in some people - let's hope you're one of them. When enbrel was really working for me, I needed no other meds - it was great! I went from barely being able to get out of bed and using crutches to hobble around, to jogging 5km every morning. I'm not on any biologic now, but keeping symptoms in check with the NSD. Good luck to you!

Hi,
I was thrilled to see your post. You are not on any biologics now. And jogging 5 km a day. Can you tell about the severity of your desease initially before starting enbrel.

Regards.

Jay

Runnergirl,

That is so awesome!! A marathon, you stud!! 10k the longest one for me yet, I'll have to work up to it. Good luck with med school, that is so cool you were able to continue. Aren't we lucky to be living in a time when the biologics are available!

-Donette

Hey Janet,

Thanks for the pointers on injecting. I need it.

Wow, 1 1/2 years. I'm not sure what I am expecting out of it for duration but I sure feel good right now (5 days post 1st injection). The really DUMB thing I'm dealing with now is depression, which seems so stupid. After months of excruciating pain, my BODY feels so good and my mind is wacko. Unless I'm around a bunch of family or friends (thank goodness for Easter weekend) I could just sit and sulk. I think it hit me when the pharmacist was explaining enbrel to me over the phone (mail order) he said, "Now it's important that you understand that this medicine only helps control your sypmtoms of this disease, it is not a cure." I mean of course I knew that, but it felt like someone poked my helium filled psyche with a needle. **ker-pop** I really just keep forgetting to focus on the day at hand and how good I feel right now. For some insane reason I am scared of the future because I know what the past felt like before they could pinpoint a diagnosis. It was dang painful and I don't know if I am brave enough to deal with the time when I've gone through all 3 biologics and then what. Pain again. Sorry I'm such a downer. It's not normal for me. Maybe the sunshine next week will help me shake it off, eh?

I have read a few posts of you brave warriors out there who are AS 3 biologics 0 and you are truly inspirational. Thanks for your courage and good examples.

That is interesting that the Enbrel didn't fix your hands. I wonder what it is about the medicine and the different places it works on and doesn't work on. At diagnosis I had AS really bad in my upper arms, shoulders, neck, slightly in hips, right knee, left wrist and both feet (metatarsal or ball of foot area). I was a freakin' wreck. I started off jokingly telling my husband to just take me out back and shoot me and put me out of my mysery (we live in a rural area). Well as it wore on month after month with no Dx it wasn't a joke anymore. And the pain, my left wrist was so sore it throbbed and I carried it around really close to by body so nobody would accidentally bump it. I didn't know back then that I should have been moving it around and so at my diagnosis it was almost frozen from my "protecting it." The doctor freaked out a little bit and stuck a cortisone needle in it to get it moving again. Ouch. But it worked. Is your hand pain in your wrist or I wonder if it is more similar to what I had in my feet, between the finger or toe bones?

Take care,
Donette

Hey Linc,

You are exactly right about "lost." That is great.

I have been continuing to take cyclobenzaprine (muscle relaxer) at night because while my pain and stiffness are nearly gone, my cramping is still there. The arches of my feet and behind my knees, calves and occasionally the middle of my back. Now THAT'S an interestingly painful way to be awakened out of a dead sleep!! Not to mention I think I about scare my poor hubby to death when it happens. The first time it happened I grabbed him and yelled WHAT!! I thought it was him who had a death grip on my calf muscle. Ha ha. I was sure somebody was hurting me and he was the only other person in bed with me!! My bad.

So to show off my "green-ness" with this next question, what are you getting your blood tested for??

Take Care,
Donette

Hey Megan,

Great job on the running and controlling the disease with NSD. My body is feeling great. I had a really sore wrist and upper arms and feet and they are all 95% perfect within 2 days of the shot. My back started hurting between my shoulder blades and that was "new" but tonight at the Easter Picnic my brother in law the Chiropractor adjusted it and about 25 pops let loose and it feels soooooooo much better now. (He had a hard time adjusting me prior to Enbrel, it seems to stiff and like the joints didn't want to move) Also prior to Enbrel I couldn't raise up my arms. It had been that way since Oct. 2006 (2 1/2 years) and now I can raise them up with just a little tightness but overall pretty darn good!! At my Dx appt. my doc ultrasounded the ligaments in my arms when they couldn't raise up and he saw that my bicepital(sp?) tendons were encased in inflammatory fluid. They were being pinched off. I had to move everthing in my kitchen down to the lower shelves in the last few months. Annoying.

I erupted a new cold sore 2 days post enbrel, which sort of makes sense since it is a immune suppresor, and had some depression, but other than that I am impressed. I hope it works for a LONG LONG time!!

Take Care,
Donette

Hey Moto,

Man I hope your insurance comes through for you. If there were even one person on their board of trustees that had AS you know the outcome would be different. These people for the most part have NO CLUE what this disease feels like. I'm remined of Jack Nicholson's famouse line: "You can't handle the truth!"

Hey I wonder if Enbrel's assist line could help you. I read a post on here where a lady said there are different funds set up to help patients pay for what they need and she said she just had to wait a little while to be approved, and it was simple.

Good Luck,
Donette

Hey Rob,

I totally know what you mean, "not sure if we can handle another 50 years with AS." One bright ray of hope I did read is that for MOST people the disease sort of burns itself out as you age. Like it's not at all as severe as when you are young. I'm 34 right now, so I'm hoping by my grandma years I'll be able to golf and tour the country with some fuzzy dice hanging from the mirror of my large motorhome. The most important thing for us is to keep moving and keep our posture up as straight as possible, because those 2 factors will dramatically effect our state in later years.

That's awesome that you live down under. (Do you really call it that, of course I learned it on TV!) I've always wanted an accent like that. Did you see the movie "Australia?" (It was probably a requirement where you live, right?) What a beautiful country you live in. They had great scenery footage in that film.

sorry I'm so silly tonight-must have sleep-making fool of self

Take Care,
Donette