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Enbrel, here I come...

Posted , 4 users are following.

ama38049
ama38049

So... After 8 months only on pain killers and a visit to yet another rheumy (who happens to be a head of the department and a boss of the last two that I saw... Sorry, semi vegan diet. Ha. Not funny... plus, he lost my medical records from the past visits...) I am switching to Enbrel as soon as it's approved. What side effects should I monitor except for the obvious ones? Does anyone apply ice before the injection as with Humira? (does it help?...) Any answer will be greatly appreciated. Thanks.

0 likes, 22 replies

22 Replies

  • EmFox
    EmFox ama38049

    Posted

    Hey ama

    I don't get reactions but often bleed more than I should and it hurts later. My rheumy said to use the little bit of flab on my waistline and it's a lot better there. So simple! The other side affect I just found out was my cholesterol is lower on Enbrel. It was lower than usual six months ago but thought it was my excercise routine. But a few weeks ago it was lower than it ever has been. When I kept asking my pcp about mistakes she asked how long I'd been on Enbrel,,, about a year,,, "well, that's it." so I'm pretty happy. I had a heart attack almost 20 yrs ago and the only way to keep my cholesterol is to keep my weight down. And weight only makes RA worse I guess so I stay thin. Lucky for me I can. Good luck with Enbrel!

    M

    • ama38049
      ama38049 EmFox

      Posted

      Thanks Em. Bruising and bleeding happens with Humira too. At some point my cuts literally stopped closing and just were there for few day before "going away". Humira actually made my cholesterol higher and I always had it low so it's nice to know that at least this won't pose a problem...
  • EmFox
    EmFox ama38049

    Posted

    Oh, ya- I did often use ice or put the autoinjector in my waistband to warm it up to body temp. Both helps!
  • Buckeyes
    Buckeyes ama38049

    Posted

    I just went off Enbrel.  My rheumy wanted to try something else because I still have swelling in my hands.  I don't know if the RA caused it or the Enbrel but I have a bunch of broken capillaries on my face and chest.  I also have thin skin which causes me to bruise with those awful blue-black marks with just a slight bump.  I have been really happy with it.  No pain except for some achy wrists.  I have not been taking anything for 2 weeks and my ankles and feet are swelling again.  I am to start Simponi on the 25th.  

    The injection really does sting but it only lasts 15 seconds or less.  You get used to it.  Never tried ice, just sucked it up.  I also leave it out at least an hour to warm up.

    The worst part is the cost.  With insurance, I have been paying $200 for 90 day supply.

    good luck

    • ama38049
      ama38049 Buckeyes

      Posted

      Good luck with Simpni! The costs are certainly high even with insurance. Don't even know how much it will cost, but Humira was around 200$-250$ for a quarter with insurance. I think that it was the cheapest that you can get here. Full price of Humira was about 250$-300$ per month (or maybe per injection?) I think... Sorry, don't remember... I am in such pain at the moment that this is the least of my problems. I do worry about the mental fog though - Humira did horrible on that :-( I guess I won't know before I try... Thanks for your reply
  • ama38049
    ama38049

    Posted

    Thanks guys! Can't you inject it in the leg? Ouch... I never used Humira on the belly :-(

    Another question then - when you travel abroad, apart from a medical official letter from your dr, what other things do you need to do in order to take Embrel with you to pass security/immigration? Do you take it with you or in the luggage? Did you ever face any problems while crossing boards? Have a trip soon and wonder if to skip a portion (and I didn't even start injecting yet!) or to take it with me... Can you store it at room temperature or do you take an ice bag? Humira is one every other week so it gives more flexibility :-( too many questions, sorry...

    • EmFox
      EmFox ama38049

      Posted

      You can keep Enbrel for quite a while at room temp but it does have some warnings about getting too warm, so you'll want to pack it carefully. And here in the US, meds like this are pretty normal for transportation security folks. It looks a lot like a diabetes injector. Pretty common.

      (And taking mine in the side/belly was so much less painful)

      Happy Trails

      M

    • Buckeyes
      Buckeyes ama38049

      Posted

      They sent me a cooling bag that you can carry that chills it.  The last I heard you can keep it at room temp for 14 days but I would double check.
    • ama38049
      ama38049 Buckeyes

      Posted

      Thanks Buckeyes - I saw this too on Enbrel site, but they also say that then you can't put it in cold back. And you need to carry it with you and not in the luggage anyway. WIll be smarter soon I guess...
    • hermione83
      hermione83 ama38049

      Posted

      Hi,

      I've been on Enbrel for almost 8 years and I am happy with it (I was on Humira before that, and on Remicade before Humira). I've been always injecting it in the thigh. At first (maybe the first 3-4 months) I got skin swelling at the injection site; it looked like a rush and it was itchy. Besides that, no side effects appart for some bruising every now and then but it goes away within a couple of days.

      I've been traveling a lot; I live in Greece and I've traveled to Europe as well as South America with my Enbrel. When the flight is 1-2 hours, I pack it in my luggage in an ice bag filled with ice pads. When the flights are longer I have the ice bag with me as a carry-on; in this case I always arrange it with the flight company in advance and in the airport they are informed that they should let me carry it with me. For really long flights, I arrange with the company to let me have it in the airplane fridge.

      I would strongly advice you not to skip Enbrel! I had one injection skipped last year (I was having the flu and doctor told me to skip enbrel not to surpress my immune system further) and after that I had a really major flare which lasted for almost a month.

      Hope I've helped a bit smile

    • ama38049
      ama38049 hermione83

      Posted

      Thank you! Yes, your reply has helped a lot. When you skip a dose it always have side effects. I had it with Humira and going off it was horrible. I would assume that stopping having redness in the injection area is related to the weaker immune system – on Humira my cuts used not to develop and inflammation but just “were there” for few days and then were gone. The pain from the injection got worse though. I guess that it’s pretty much the same with Enbrel.

      When you referred to the flu that prevented you from taking the shot – may I ask if you had any fever? I am asking this since I am sick with something strange for the past month or so that has flu like symptoms, some sore spots in my mouth, but I have no fever. I do have a somewhat elevated CRP (first time in at past 6 years). The family dr says that it’s a virus and I should not worry Enbrel-related unless I develop fever. Scheduled to meet with the Enbrel nurse at the very beginning of the next week and really not sure if it's a good decision or whether I should postpone the first injection... Any help will be appreciated. Thanks again for your previous answer.

    • hermione83
      hermione83 ama38049

      Posted

      Hi,

      When I had the flu I had cold-like symptoms (sore throat, sniffle etc) and fever (around 38 degrees celsius). I got better after I took antibiotics for one week. My dr had said tha same as yours: it was the fever that had him to put me off enbrel for a while. I'd say that you should wait till you are symptoms free, but I'm not a doctor and I always want to be on the safe side smile

      Regarding pain from the injections, some of the times they are painful, others not. It is the medicine that hurts, not the injection itself. Sometimes it helps if I do it very slowly, then it is less pain but for more seconds.

    • ama38049
      ama38049 hermione83

      Posted

      Thank you. Just got my first one today :-) Despite the flu-like sympthoms... That desperate I guess....

      I had quite a long chat with the nurse (I hope that she was not dissapointed that I didn't get an allergic shock after all the waiting :-( ) - she said something that you might find interesting - she said that you should not put Enbrel in luggage since the temperature there might go below zero and you cannot freeze the medication. On the other hand she also said that airlines mostly don't want to store the med since there were claims regarding not reminding to take it back and patients left without medications. So I was told that for long flights they give you a refil of ice... Sounds barbatic...

  • ama38049
    ama38049

    Posted

    Just saw that I got the approval for Enbrel... Yahoo?... Doesn't feel like "yahoo" somehow :-(
    • Buckeyes
      Buckeyes ama38049

      Posted

      Good news!  Hope it works for you and the cost is manageable!

      Good luck to you!

    • Buckeyes
      Buckeyes ama38049

      Posted

      by the way...understand your feeling!  You are glad that it might finally work but it sucks that you have the disease that calls for it!  
    • EmFox
      EmFox ama38049

      Posted

      It was only last evening that I saw what the cost that my insurance pays. AMAZING what they can charge! No way I could afford it without good insurance. If Enbrel works for you like it does for me, yahoos are in order. (Unfortunately)

      EM

    • Buckeyes
      Buckeyes EmFox

      Posted

      There's no way it can cost that much!  I think I heard  once  that they charge so much because they put so many dollars into research!  I think on my statements that it costs over $16 thousand for 90 days!  I couldn't use it without insurance either!  It's a racket!  

      Sure hope you have good luck with it!

      i was on methotrexate with it in the beginning but it was causing issues with my lungs so was taken off of it.  

      Keep us posted and let us all know how you're doing.

    • EmFox
      EmFox Buckeyes

      Posted

      I guess my insurance is getting a good deal- only $11,000 for three months?!?!?

      I moved off mtx to Enbrel one year ago now, and I'm able to do a lot more without residual aching and cramps. It's night and day over where I was before so hopefully no changes for a while. Good luck ama! And Buckeys with the simpni. Hope the new meds work for you!

      M

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