Everything Enbrel

I started on Enbrel (rather unexpectedly) on December 9, 2009. I had been taking Simponi, which I loved, it just didn’t last more than a week. (See Simponi Synopsis page for further information.) My rheumatologist decided I needed to switch and, since I was due for my shot, switched me right then and there.

First Injection 12/9/09

I got my first injection in my rheumatologist’s office when she switched me from Simponi. I was warned that the shot would sting — it didn’t any more than Simponi or Humira. I’m not looking forward to a shot a week (rather than a month like Simponi) but if it will work, it’s a small price to pay. With Simponi I noticed immediate relief. I could literally feel the shot working. Enbrel hasn’t had that dramatic effect, but it’s now the day after the shot and while I don’t feel amazingly wonderful like I did with Simponi, I can tell I feel better than I did before I took the shot. My wrists and hands are still stiff, but my knees — my RA barometer — didn’t feel creaky this morning when I climbed the stairs to my second-floor office.

I’ll keep up with my observations on Enbrel on this page, so stay tuned.

Second day after the shot and I can really tell it’s working. I picked up my month’s supply today and it was approximately the same cost of my Simponi — approximately $1800. I only have a $25 co-pay and the drug company will provide a card that pays for the co-pay for a while. At this point I’m really encouraged.

This is now Tuesday before Wednesday when my next shot is due tomorrow. I have to admit that I woke up “aware” of my knees. They were just a bit stiffer than they have been the past week since my shot, but the stiffness let up and I have been running up and down the stairs at work without even thinking about it. This is pretty amazing. And the fact that I get another injection tomorrow should mean that whatever slight discomfort I am experiencing today will be on its way out.

2nd Injection, 12/16/09

The second Enbrel shot has worked its wonders.  It wasn’t until I was bounding up the stairs to my office this morning, lugging my briefcase that I remembered that my knees along with the rest of my joints were supposed to hurt — and they don’t.

My rheumy’s nurse warned me that Enbrel would sting (whereas Simponi is supposed to not sting, and Humira is supposed to). Last night I figured out that it doesn’t sting any more, but it stings longer because the injection itself takes longer. Humira was a maximum of 10 seconds, Simponi was 3-5 second. Enbrel takes a full 15 seconds. Just about the time that Humira or Simponi would start to sting a bit, the shot would be over, with Enbrel, you’ve still got half the shot to go. But I will tell you that a few seconds of stinging for the relief I’ve been getting is an extremely small price to pay.

Third Injection 12/22 and Fourth Injection 12/30

I took my third injection a day early on Tuesday 12/22 because we were leaving that morning for Christmas vacation and I didn’t want to try to smuggle my shot through homeland security. This injection was in my left thigh and I had a slight rash/welt that appeared on the injection site that disappeared, then reappeared a day or so later and latest about a week. The results continue to be great. We went to Las Vegas for Christmas and do a lot of walking, and it was almost like I didn’t have RA at all.

The fourth injection was 12/30. I waited for the full eight days to get back on the Wednesday schedule. By Wednesday morning, I was starting to feel the “pangs” as the shot was wearing off. No where near as awful as after the Simponi or Humira shots wore off, but I was still glad to take the injection Wednesday night. This was in the right thigh and while I got the immediate red spot around the injection site, by Thurs. morning it was completely gone. I’m not sure what the difference is. The injections that had “lasting” welts were both in my left thigh — which shouldn’t have made a difference. However, the two injections in my right thigh were done right before bed. Maybe resting afterward helps eliminate the irritation that causes the welt to last.

At any rate, the relief seems to be there. I noticed a little stiffness in my hands this morning, but we’ve been having cold, wet weather here in Dallas and that seems to aggravate things in general. Still not as bad as before Enbrel, though, so I’m pleased at this point.

Update on 4th Injection

I’m not sure what’s going on, but the site reaction this time is just awful. It’s a big, red, hot,  itchy welt that actually woke me up from a sound sleep last night. Cortisone cream doesn’t start to slow it down. I put an ice pack on it this morning and took an antihistamine. Hopefully that will calm it down. I have a nurse appointment on Wednesday. I took a picture of the reaction site today to discuss with the nurse. I hope they don’t take me off it, because the medication is working, but I also can’t stand this discomfort. I’ll keep you posted.

Second update, 4th Injection

So this morning I had my appointment with my rheumatologist’s nurse to check in since it’s be a month since I started Enbrel. I love the drug, but the injection site reaction has been getting more and more severe. I took a picture with me so I could discuss it with the nurse. The last reaction covered nearly the entire top of my thigh and lasted about six days. I’m due for my next injection tonight, and she has suggested that I take an antihistamine one hour prior to the injection and that I switch the injection site from the top of my thighs to my abdomen. We’ll see if that helps. That’s their first course of action in cases like mine. If that doesn’t work, unfortunately the choices from here are very limited. I’ve already tried MTX, Humira, and Simponi, and for various reasons, I’m not a good candidate for Remicade. This really sucks.

5th Injection, 1/6/10

My rheumatologist’s nurse made the following suggestions: (1) take an antihistamine an hour before the injection; (2) ice the injection site prior to the shot; and (3) use the abdominal injection sites instead of the tops of the thighs. I did all of these. The shot was almost pain-free, which is a good thing. It doesn’t hurt much, but it does hurt some, so the ice helped (as well as probably the extra “padding” on my tummy). I got a small reaction and the injection seemed to reactivate the other injection sites because they started itching again, although the rash didn’t reappear. The reaction area was much smaller than previous and it has cleared up much faster.

The nurse said that sometimes people have a reaction for the first couple of months, then it stops when your body gets used to the drug. I am hopeful that’s the case with me, so I’m going to stick with it for a few more weeks in hopes that things calm down. I’ll keep you posted.

6th Injection, 1/13/10

I took my 6th injection following the ice/antihistamine/abdomen routine I used last time. I can really tell a difference in the way I feel. Yesterday my ankles were painful and starting to swell, as was my wrist, and I was really suffering from fatigue. This morning, after my injection last night, I feel much, much better. I haven’t seen a reaction to the injection yet, but it doesn’t usually show up for 24-36 hours.

I am going to continue this process, so I won’t update every week unless there is something new to report.

Two Months and Counting (2/13/10)

It’s been almost exactly two months now since I started Enbrel. The injection site reactions have finally calmed down. This past shot I had barely any reaction at all. I’m still doing the antihistamine (Benadryl) an hour before the shot and I take a non-drowsy antihistamine the next morning and this time had minimal to no site reaction. My joints seem to be doing well on Enbrel while I’m up and around, but I’ve noticed the morning stiffness when I wake up is still an issue. It’s not just in my knees but pretty much all over. After I’ve been up and around and had my shower, most of me loosens up and I’m good to go. My hands never loosen completely up and my knees will get stiff if I sit through a long meeting or go to a movie, but I don’t hurt going up and down stairs like I used to. I have noticed my Sjogren’s is getting worse. I’ve had to give up wearing my contacts and have started using lubricating eye drops several times a day. It’s another 30 days before I see my rheumatologist again, so it will be interesting to see what she has to say.

Over 3 Months – 3/26/10

Things seem to have stablizied on the Enbrel front. I no longer take the antihistamine nor do I have the injection site reaction. For those of you who suffered with it at first like I did, there truly is hope. I can tell the shot is starting to wear off a bit by the time I’m due for the next one, but nothing like the major swings I had on Humira and Simponi. This taking a shot every week seems to even out the result. And yes it stings a bit, but I look at the clock and countdown the seconds and then it’s over.

Being stable is a good thing. It’s not perfect. Perfect would be not having RA at all. But unless something untoward happens, I have a pretty good idea of what to expect. Not all the symptoms are gone — I think that’s too much to ask. But they’re livable and don’t intrude too often into the rest of my life.

Twenty Months and Counting

If you have kept up with my blog, you know that I have also added Arava to my cocktail mix. Enbrel had lost some of its effectiveness (probably due to the fact that I had to go off of it twice in 2010 for shoulder surgery). However, with Enbrel and Arava I have continued to have good results — not perfect — but good. I no longer experience any kind of injection site reaction or other side effects. These subsided after the first two months.

January 25, 2012

I’ve now switched from Enbrel to Orencia because the Enbrel quit being effective. For a further discussion, go here.  This will be the last post for this page until/unless I return to Enbrel.

20 thoughts on “Everything Enbrel”

  1. Michelle Ropponen said:

    I’m so glad to have read your story!

    I’ve been on biologics for 2 years and haven’t noticed more than a 10% change from Enbrel to Humira to Simponi (at least 6 months on each). I had my last shot of Simponi 8 days ago and flared 4 days later. So far, Prednisone and MTX have helped the most.
    I have to admit that I am selfishly happy for you to have found something that gives you immediate relief (even if in the short run)… because I didn’t know that was possible and it refuels my hope!
    Also, it makes me feel better about choosing to discontinue the shots since they didn’t seem to help at all.

    Thank you. Thank you. Thank you!

    • carlascorner said:

      Thanks for the encouragement. Enbrel has been around for a while which actually gives me some comfort. Your comments have given me hope that maybe it will work for me. At least if I’m taking medication weekly, I won’t have long stretches where I’m in a “nothing’s working” mode.
      Thanks for your comments and your support.

  2. I have been on Enbrel for over two years now. I have also been in remision since I began the Enbrel. I am off all other medications and do not even have the need for a NSAID. Methotrexate did nothing for me, Enbrel has worked wonders. Good luck, and i hope you have the same results.

  3. Hi If any one can give me more info on Enbrel will be highly appreciated.


  4. Glad to hear the Enbrel seems to be working fairly well for you right now. Hope it stays that way!
    Do you mind if I ask what the various reasons are that make you a “not good candidate” for Rituxan?

  5. Thanks for sharing your experiences Carla. Sites like yours helped me to overcome my fear of treatment which kept me locked in pain for too long.

    I’ve been on Enbrel, with a low dose of MTX for almost two months and it has totally given me my life back! The extreme listlissness and exhaustion that I was experiencing from my RA, along with the joint pain, was just horrible. After the very first Enbrel injection I felt so much better – and now almost two months later I feel terrific, my energy is back and no pain. I get little twinges in my wrist, shoulders and fingers that remind me that the RA is still there but those are nothing compared to the debilitating pain and tiredness I had before.

    The only injection site problem I’ve experienced is brusing but a friend told me that it was happening because I would slightly move the needle during the injection. Now I am very carefull to be very still when giving myself the shot and I’ve had no more bruising at all.

    By the way, for anyone who has to deal with chronic pain please learn how to meditate, take some classes in it. Meditation really works in helping to overcoming pain.

  6. I’ve been on biologics for 2 years and haven’t noticed more than a 10% change from Enbrel to Humira to Simponi (at least 6 months on each). I had my last shot of Simponi 8 days ago and flared 4 days later. So far, Prednisone and MTX have helped the most.
    I have to admit that I am selfishly happy for you to have found something that gives you immediate relief (even if in the short run)… because I didn’t know that was possible and it refuels my hope!
    Also, it makes me feel better about choosing to discontinue the shots since they didn’t seem to help at all.


  7. Knowing what this disease does to people i’m happy it helps you. Truly. It doesn’t help me at all so far. Only steroids help. I gave myself seven weeks of shots in one cycle; to no avail. My Rheum said sometimes it takes 14-15 weeks to work for some, so i agreed to try it again. Used 4 so far…no relief and I get pretty bad injection site reactions from it too. I switched from abdomen site to buttock and the reaction goes away faster but still as severe. I am going to try the ice on injection area next week though. Thanks for sharing.

  8. just stared Enbrel, insomnia, more pain in hands and right arm, red itchy needle site 5 by 6 after 7 days
    thankyou for the info

  9. thanks all of your for your responses…. Started Enbrel last week!

  10. Stephany Heine said:

    I just want to think you for keeping such a detailed account of your journey. I found this really helpful

    • Hi Stephany: I am simply giving back to those RA patients whose experiences gave me hope and perspective when I was diagnosed. If it helps you or others, then it’s worth doing. Thanks for visiting and thanks for your comment.

  11. Thank you. I have just started on Enbrel for PsA. Your comments are helpful.

  12. I missed my enbrel dose today and am now on vacation. Will it be that bad if I’m a week behind? Do I double dose when I get back.

    • Hi Jill: I would suggest giving your doctor’s office a call and asking them. Here’s the information from the Enbrel medication guide on their website: Do not miss any doses of Enbrel. If you forget to use Enbrel, inject your dose as soon as you remember. Then, take your next dose at your regular(ly) scheduled time. In case you are not sure when to inject Enbrel, call your doctor or pharmacist. Do not use Enbrel more often than as directed by your doctor.
      Enbrel builds up in your system so even though you miss a dose and may experience some symptoms or a flare, hopefully you can get back on track quickly. Hope you enjoy your vacation.

  13. Thank you!! I had the same injection site issue and reading your comments really helps. Again, Thank you

  14. I am so glad I came across your blog. I am starting Enbrel in the next week or so and I am really not a fan of needles. You would think after more than 14+ surgeries/procedures and all the blood work these doctors request I would have lost my phobia on needles but it puts me thrugh major anxiety when needles are involve or when I need to add a new specialist to my already team of 5 and pending on a neurologist because the inital one has a waiting time of 2 to 3 hours before getting called in. Any hoot thank you for sharing this for sure is going to help if I have a reaction Im sure bells will ring in my head if something is not right.

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