Is Enbrel The Solution?

Hi everyone, I joined rheumatoidarthritis.net very recently. I hope to have some useful exchange of knowledge and experience with you as a RA patient.

I am 61 years of age. I was diagnosed with RA in 2013, or more specifically with Spondyloarthritis. It affects me mainly on my neck, muscle in between my shoulder blade, lower back, rib cage on the left side and sacrolitis on the left side. I have been suffering from pain and stiffness when the disease is active.

I had been on dicflofenac, predisolone and paracetamol. Currently, on arcoxia 90mg. Though on arcoxia, my ESR and CRP are elevated. I need to take an arcoxia tablet once in every 3 to 5 days to control my pain and stiffness. My rheumatologist recommended me to go for Enbrel to control my disease as arcoxia does not seem to resolve my problem as I have been on it for a year already. I am very worried about the potential side effects of Enbrel. Can anyone share her or his experience with me? Any sharing would be much appreciated.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (26)
  • Julie
    4 years ago

    Hi, I am so sorry to hear about your struggle. I am a 41 year old woman living in Calgary and work as an elementary teacher. At 22 I was diagnosed with RA which wasn’t much of a surprise since my mom had it. I took methotrexate and it worked for over 10 years. I then went on enbrel which seemed to be working but my knees still ached and I never really knew if it was working as well as it should…that’s the problem for chronic illness, we never really have a reference for how well it should be working! I took enbrel for 2 years then ended up having severe eye problems with my left eye: scleritis and iritis and nearly lost my eye. I was seeing a Retinologist and had to take time off work. None of the doctors could figure it out until my rheumatologist called me on a Saturday to say she had been doing some research and told me to STOP taking enbrel immediately! First, you know it’s bad when your specialist calls you on a Saturday! I stopped and immediately my eye started to improve. Going on Remicade was the last resort to get the eye business under control. I was on enbrel for 2 years and now remicade for 2 years. The remicade usually wears off in the 5th week in my six week cycle but my eye is 90% better. What scares me with biologics is NO ONE really knows the side effects. It’s been a painful struggle. My advice is give the enbrel a try if you are comfortable BUT monitor your eyes very closely! Apparently remicade is in a different class of meds than enbrel. Best of luck to you!

  • Micheal Ambrose Lee author
    4 years ago

    Dear Ms Julie,

    Thank you very much for sharing and the points you mentioned are very useful indeed.

    I fully agree with you that no one seems to know the side effects of biologic drugs. Enbrel is no exception. The patients just have to watch out for herself or himself. That’s what make me indecisive until today. I am still managing my pain and inflammation with Arcoxia 90mg.

    Regards,
    Micheal Ambrose Lee

  • mamarama
    4 years ago

    I, too, worried about Enbrel side effects. Unfortunately, it’s the only biologic that has worked for me and believe me, since I was diagnosed in 1998, I have tried almost all of them. I did stop for a wh1le as it seemed to just stop working. Turns out I had developed an antibody to the protein in the drug. I switched to Remicade (no help), Symponie (sp) no help and a couple of others. After 2 years of taking waaay too much Prednisone, I went back on the Enbrel and it worked beautifully. I just pray I don’t start producing that antibody again. I do still have to take Prednisone (6mg daily) and inject methotrexate once weekly and I hate the side effects, especially of the prednisone and I understand the dangers of Enbrel. A few years ago a friend developed RA and, after a year on Enbrel, died of lymphoma. Did the Enbrel cause it? Maybe yes, maybe no.
    Interestingly, my older sister has RA, has had it for much longer than me, but our treatment regimens are very different. She uses Remicade and Immuran; Enbrel really did nothing for her. I have fibro and facets as well as spinal stenosis – she does not but does have much more severe RA in her spine than I do.
    We are all different; no one here can say what’s right for you, only what’s worked or not worked for them. I find that days I don’t do stretching or yoga or get in the pool are generally bad days; days I do are good days. For me, pushing myself to be more active is almost as important as remembering when to take what med. Good luck to you, it’s a hard road and I know I need all the friends I can get.

  • Julie
    4 years ago

    Hi, I was interested in your comment when you spoke of developing antibodies against the drug. I took enbrel for 2 years and already commented above about my experience. I am now in remicade and have been on a 6 week schedule. After about a year, I noticed the pain would resurface a week before my infusion. My rheumy doesn’t know for sure why but guesses I am building up antibodies as well. She put me back on methotrexate saying to helps to stop the antibody stuff. How did you know you were building up antibodies? Any advice from anyone or their experiences on this would be appreciated!

  • Micheal Ambrose Lee author
    4 years ago

    Dear 186ogb,

    Thank you very much for kindly sharing your experiences with me and your good advice. I agree with you that Enbrel is among the best biologic drugs we can have.

    It’s good that you have no side effects yet on Enbrel + Pednisolone + Methotrexate so far! The potential side effects and complications are indeed worrying to any knowledgeable patient despite whatever assurance that the specialist might have.

    Wish you all the best and good health.

    Regards,
    Micheal Ambrose Lee

  • tgribl
    4 years ago

    Hi,Michael
    I am very new to this site I was diagnosed in 1997 and it’s been a roller coaster ride for me I was on embers for two years and worked well in the beginning towards the latter I was expirencing a lot of yeast infections and had to stop but it worked very well for me.

  • Micheal Ambrose Lee author
    4 years ago

    Dear Tgribl,

    I am very sorry that I typed your name wrongly in my reply below. Please accept my sincere apology.

    Yours sincerely,
    Micheal Ambrose Lee

  • Micheal Ambrose Lee author
    4 years ago

    Dear Trubl,

    Thank you very much for sharing. Enbrel is a very good biologic drug without doubt but its potential side effects are worrying. We always hope to put our RA under control but the fear of developing other complicating diseases In addition to RA is indeed a difficult choice to manage our pain!

    Regards,
    Micheal Ambrose Lee

  • sc
    4 years ago

    Hi Michael,

    I was on Enbrel for 6 weeks. Had injection site reactions, which were not so problematic. However, I had severe neurological symptoms and an upper respitory infection that forced me to discontinue the medication. I am starting Humira next week (insurance company mandates that I try at least two TNF inhibitors before they will approve me to advance to the next tier of drugs).

    Enbrel does seem to work for some people. I really hope that you get good results.

  • Micheal Ambrose Lee author
    4 years ago

    Dear SC,

    Thank you for sharing your experience with me even though Enbrel did not work well in your case. It is indeed difficult as a layperson to choose the right biologic drug other than relying on the recommendation of the rheumatologist. I may be thinking too much, it is not easy to be comfortable with the recommendation of the rheumatologist after being given to understand its potential side effects.

    Regards,
    Micheal Ambrose Lee

  • Elizabeth Farchette
    4 years ago

    Hi Michael. I was diagnosed with RA in October of 2008. Since then I ran the gamut of DMARD drugs and also a stint of Prednisone for the first 2 years of my diagnosis. In February of 2011 I found I was no longer able to walk as the pain had become so bad. In mid 2011 I began Enbrel taken as 25mg Sub-Q 2x a week. For me, it has been a God send. I regained my ability to walk and drive, and feel pretty good. I still have my flares, but not nearly as bad, and hope to get to remission.

    Having said that, I chose Enbrel after discussing with my Rheumy, and researching the drug itself, their Customer Co-pay plan and their Patient Support program. Both are really great, and they supply me with my sharps disposal at no charge so I don’t have to throw them in the trash and can dispose of them properly.

    Best advice I can give: Have a very frank discussion with your doctor, and research your drug options.

  • Micheal Ambrose Lee author
    4 years ago

    Dear Ms Elizabeth Farchette,

    Thank you for sharing and your advice.

    Your experience before Enbrel has some similiarities with that of mine except I have no courage to go for Enbrel yet fearing of its potential side effects. I also do not know how frequent I need to have Enbrel injection and would need to budget for it since there is no financial assistance in my country.

    I’d discussed with my rheumatologist and she recommended Enbrel to me which in her opinion is the best that I can have. On the potential side effects, she told me not to worry. In case, I have a serious infection, see a doctor or get myself admitted to the hospital.

    Thank you.

    Regards,
    Micheal Ambrose Lee

  • becky
    4 years ago

    Hi! I was diagnosed with RA in 2010. It came on suddenly, and I could barely walk, as well as having extreme fatigue. I rather unwillingly took prednisone as a temporary answer, so that I could walk. I chose Enbrel over methotrexate, because of possible stomach issues. I got relief with Enbrel starting within 4 days and was also able to taper down and get off the prednisone. I also got my normal energy level back.I was able to take it for 3 years, with no side effects, before it stopped working for me. During that time it was a Godsend. We are all very different as to each drug’s effect, of course. I haven’t been able to take some of the other drugs such as methotrexate and Arava, because of side effects. Also, remember that they are required to list all possible side effects reported while a patient is taking a drug, even if there are no studies proving that that drug is the cause.
    It can be scary, but a good doctor will be monitoring you regularly for any possible complications. Good luck!!

  • Micheal Ambrose Lee author
    4 years ago

    Dear Becky,

    Thank you for sharing.

    I am indeed worried of the potential side effects of Enbrel. No doubt that it one of the very promising drugs available. It is a very difficult decision to go for it which can have life threatening side effects. I did discuss the potential side effects with my rheumatologist. She told me not to worry and if I get an infection, see a doctor in my hometown. Since I am living in a small town which is quite a distance away from the city where my rheumatologist is operating her clinic.

    May I know the frequency of Enbrel injection and the dosage that you needed during the 3-year period. What are the treatment that you are resorting to when it stopped working for you.

    Thank you.

    Regards,
    Micheal Ambrose Lee

  • Emma
    4 years ago

    Hi I was diagnosed with RA 3 years ago . I tried various medications with no improvement to my condition . As a result I started taking Enbrel 50 mg once a week Iv had no side effects as yet. I must say it took a good four months before I felt the long term effects from taking Enbrel. Iv had to stop taking it twice due to chest infections and my symptoms appeared back very quickly.

  • Micheal Ambrose Lee author
    4 years ago

    Dear Ms Emma,

    Thank you very much for sharing.

    May I know how long have you been on Enbrel? Also, is you chest infections caused by Enbrel?

    You response is much appreciated.

    Regards,
    Micheal Ambrose Lee

  • Cassandra Bird
    4 years ago

    Hi Michael. I was diagnosed in April 2014 I’ve been on prednisone, hydroxychloroquine, methotrexate and sulfasalazine since diagnosis. I began enbrel injections 50mg weekly over last 2 and half weeks. So far I haven’t suffered any side effects. I also suffered methotrexate poisoning of my lungs whilst on that and had one infection after another ending up in hospitalisation back in October with very damaged lungs. It was a from prognosis for a while. I came off methotrexate and went on sulfasalazine. Now I’ve started the enbrel. The first week I thought I noticed a difference, my shoulders neck jaw and elbows seemed markedly reduced in swelling and pain. 2nd week, I don’t know if I’m flaring, so far I’ve been in one long progressive flare! Of maybe I’m being attacked by infection but I feel rotten, severe pain, seems almost worse after a small degree of relief. My shoulders jaw etc were the last parts of my body to succumb to the RA. I’m still hopeful this drug may work. I’ve recently read the eBook “another Alice” by Alice Peterson. Fascinating reading for any RA patient! I pray I have the success she saw with her anti tnf treatment. I will come back and find you if I have more to report. Good luck with your future journey x

  • Micheal Ambrose Lee author
    4 years ago

    Dear Ms Cassandra Bird,

    Thank you very much for sharing your experience with me.

    Regards,
    Micheal Ambrose Lee

  • Joe Jarvis
    4 years ago

    I was diagnosed with RA on my early 40`s. I was strated on weekly self injections along with 100 mgs of Celebrex 2x daily. It worked very well fo me for over 12 years. I didn’t have any apparent side effects not even at the injection site. It like many medications just lost it’s effectiveness over time. It is definately worth a try,

  • Micheal Ambrose Lee author
    4 years ago

    Dear Joe Jarvis,

    Thank you very much for sharing particularly on the effectiveness of Enbrel. Its potential side effects are my primary concern.

    May I know after your starting weekly injection, how many injection you need on a monthly basis for maintenance dose over the years?

    Thank you.

    Sincerely,
    Micheal Ambrose Lee

  • Maryjane
    4 years ago

    I was one of the first patients to be put on Enbrel when it got FDA approval. It provided me with 15 years of excellent quality of life with no side effects.I sadly had to discontinue in 2012 because I developed other autoimmune diseases that are contraindicated with the Enbrel. Talk to your DR. It only took the first two shots and it was like I didn’t even have RA anymore. I miss it terribly 🙁

  • Micheal Ambrose Lee author
    4 years ago

    Dear Ms Maryjane,

    Thank you very much for sharing.

    Enbrel can also cause other autoimmune diseases other than its potential side effects.

    I wonder how many Enbrel injections you need in a year prior to its discontinuation in 2012 in order to control your pain and inflammation.

    Your reply would be much appreciated.

    Thank you.

    Yours sincerely,
    Micheal Ambrose Lee

  • Marti Stevens
    4 years ago

    Hi, Michael. My own personal experience with Enbrel (combined with methotrexate) has been the best pain and inflammation relief I’ve experienced thus far in my medical treatment of RA. I have had zero side effects. Of course, every patient has different results. If your doctor encourages you to try it, try it! If it works for you, great! If it doesn’t, no harm, no foul, try something else! I’ve been using Enbrel successfully for about 3 years. The injection site gets red and swollen for a couple of hours, but that is a small price to pay for a week of relief! Good luck to you as you research what works best for you!

  • Micheal Ambrose Lee author
    4 years ago

    Dear Marti Stevens,
    Thank you for sharing your personal experience with me. It is encouraging to note that you have zero side effects! The potential side effects are of serious concerns to me.

    Hope you could share with me further on the following questions:-
    1. For the 3 years, you used Enbrel, how many injections had you taken?
    2. Is your injection 50mg each?
    3. For a week of relief, how many injections you need?
    4. Are there any minimum injections you need to have to in order to control the disease each time when it flares up?

    Thank you.

    Regards,
    Michael Ambrose Lee

  • Jenn Lebowitz
    4 years ago

    Hi Micheal Ambrose Lee,

    Thank you so much for sharing your story.

    While you may get more personal feedback from the community, we thought these two articles on Enbrel and side effects might be useful: (1) http://rheumatoidarthritis.net/treatment/enbrel-reviews-how-does-it-work/ and (2) http://rheumatoidarthritis.net/treatment/enbrel-side-effects-safety-review/.

    We hope this proves useful. Please do feel free to keep us posted on how you’re doing. Thanks for being part of the community!

    Best,

    Jenn (Community Manager, RheumatoidArthritis.net)

  • Micheal Ambrose Lee author
    4 years ago

    Dear Ms Lenn Lebowitz,

    Thank you for your prompt response and the information provided by the two articles are invaluable.

    My worry before starting on Enbrel is mainly on TB, cancer and fatal infections. These problems were not picked in the practical clinical trials but are much emphasized as a precautionary note. I would appreciate if you can share your views with me on this. I have been taking a vaxigrip injection once a year since 2002 because I was vulnerable to flu infections in the past. Recently, I was having pneumonia and just recovered. I feel that my risk on respiratory infections can be high.

    I have been rather indecisive which is a better option considering the benefits and risks involved, i.e., to carry on with an arcoxia of 90mg once in every 3 to 5 days or to go for Enbrel. I would very much appreciate if you could kindly share your knowledge with me to assist on my doubt and indecision.

    Thank you.

    Yours sincerely,
    Micheal Ambrose Lee

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