Wednesday, November 12, 2008 Calamity Jane, Community Member, asks

Q: Just started Enbrel, want to hear other peoples' experience.

I've just started Enbrel (just took my 2nd shot today), and am wondering what experiences other people have had with it?  I tried Humira a few months ago, and had a terrible, extreme reaction, which could have been allergic.  (Mouth, throat and hands covered with painful white blisters, coughing, throwing up, extreme dizziness, extreme weakness, basically feeling like I was going to die).

 

I've resisted trying these drugs for years, and think they are very toxic and scary.  But I'm desperate, have too much pain and fatigue to function, even with prescription pain meds.  I feel that my whole life is just suspended, like I'm not really participating in life anymore, and can't accept that, so I'm giving the Enbrel a try.

 

And I'm starting to think it might be working.  I seem to have a little more energy (that alone would be miraculous, as my fatigue has been just deadly for 2 years), and I'm walking a little stronger -- my hips are not screaming in pain.  Can it work this quickly (one week)?  What kind of side effects might I expect?  When I took the first shot last week, I was outlandishly tired, even more than usual, for about 3 days -- I couldn't do anything but sleep.  Is that the Enbrel?  If so, does it get better?

 

Also, what about the immune suppression aspect?  Do you catch colds or flu easily, and is that dangerous?  My rheumatologist is not being especially understanding about my need to get these answers, a lot of answers and anectodal evidence.  She just says, basically, that it works and to take it.  She's got me pinned now, I'm sorry to say, as a resistant patient, just because I have fears about the toxicity of these TNF-blockers.

 

Has anyone else gone through this -- the combination of hope and fear?  I would really appreciate hearing from you.

 

Thanks so much,

Susan Noel

 

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Answers (6)
Sara Nash, Health Guide
11/12/08 7:02pm

HI Jane,

 

I have had, so far, a very positive experience with Enbrel and have been on it about 11 months. I was started on it fairly quickly after my diagnosis (two months after starting plaquenil and not seeing any relief). I had some initial reservations about it since I had read about some of the possible links to cancer, etc. and the risk of infection, but I had a friend who had been on it for AS who responded really well and had not had problems.  

 

For me, it began working pretty quickly.  Within the first two weeks, I began to notice a small difference in the amount of swelling, pain and fatigue, and I continued to improve steadily and pretty rapidly over the next few months. After about three or four months, I was feeling drastically better-my energy had improved, my joints were not swollen anymore, the pain had subsided for the mos tpart. I would now say that I am managing my RA pretty well-it's not perfect, but vastly different from how I felt and what I was able to do a year ago.

 

The only side effect I experienced was a pretty extreme reaction at the injection site.  It would become completely swollen, red and puffy, and itch like crazy for a good week.  I tried icing it before and after the shot, which helped a little, but then I finally just switched to taking the 25mg shot twice a week, and that has made a big big difference. I still get a little reaction, but nothing that is distracting, painful or horrible to look at!

 

So far, I have not had any increase in colds or infections (I actually haven't gotten sick since I began it).  I just got my flu shot, so am hoping that I'll make it through this winter without any trouble.

 

I did not notice any increase in fatigue in relation to my shots.

 

All in all, my enbrel experience has been good. I remain a little fearful/nervous about what the long term effects could be, but since it has essentially given me back my life, I feel like for me, it is worth the risk.

 

Hope this helpful, and that it will offer you relief if you decide to stick with it!

Sara

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Hope, Community Member
11/13/08 8:41am

Dear Jane

I have been taking enbrel (50mg shots) once a week for two years and just recently ( the lastyear) 50mg twice a week.  The first year on it I was extremely sick compared from when I was on Humira,but since them I may get a sinus infection once a year which I'm prone to any way.  I think that it's great.  Nothing has worked well for this long for me, yes I still have and some swelling but I know if I don't have it it will be a hundred times worse.  My energy level is up all the time.  All the fatigue you feel is left over from a flareup.

Good luck to you and I hope you stick with it and feel great

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Lene Andersen, Health Guide
11/13/08 7:38pm

Enbrel was my miracle drug. I'd been in a horrific flare for a very long time that had left me as weak as a kitten, finally got approved for financial help and got my shot at two o'clock in the afternoon. Went home for a nap and woke up at six a different person. With every shot after that, I improved more and more and thinking of those days makes me go all still and awed inside, even now, four years later.

 

I was nervous when I started the drug, but at the time, the RA had wrecked my health and my life so completely that it was a choice between taking a big drug to treat a big problem or prepare myself to going to a nursing home. It was a no-brainer. I wanted my life back and Enbrel gave me that.

 

In terms of side effects, I had some muscle tension and pain, but I have fibromyalgia, so it's quite likely that Enbrel interacted with that. My more common side effects were extreme dryness, needing to drink lots and lots of water and my skin got very dry, as well. It also massively increase the "production" of my sinuses, leading to many almost sinus infections. I say almost because I found a way to largely keep them at bay, involving drinking lots of water, lots of pineapple juice and eating lots of garlic. Awhile back, I wrote a post on how to manage medication side effects and many of the issues discussed in that post related to Biologics. You can find that post here. I did have some fatigue surrounding my shot, but as your body adjusts to the medication over time, this becomes much easier to manage.

 

I have been on biologic drugs for four years now (had to switch to Humira two years ago due to the above-mentioned muscle pain) and got my first cold a month ago. It did seem to flirt with going into my lungs, but ultimately didn't and during the cold, I skipped a dose or two of Humira in order to better be able to get over it. My friends and family all understand that if they are sick or even building up to being sick, they need to stay away from me and I try not to shake hands with too many people. Wash your hands often, carry a small bottle of hand sanitizer and you should be okay.

 

Many doctors are a bit uncomfortable with patients who are good advocates for themselves, who do research and have questions. However, it is your body, your disease and, as I'm fond of saying, you and your doctor(s) are a team, but you are the team leader and you make the decisions. It often takes a while before that shift in the relationship with a physician takes place, but keep working at it. And in terms of your fear - completely understandable in light of your reaction to Humira - I hope that as the Enbrel works for you as it seems to be doing that you will become less nervous. Remember that a big problem needs a big solution and big solutions have higher risks than small solutions. What has helped me in conquering my fear of medications that mess with my body chemistry is asking myself what my life is worth. And to me, the ability to live my life, to be there with and for my family and loved ones, to work and have a fairly normal life is worth the risk. I also supplement the "Western" medicine with alternative treatments, such as acupuncture, shiatsu and naturopathy, to help me be as healthy as possible.

 

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Lene Andersen, Health Guide
11/13/08 7:39pm

sigh.  Forgot that link to the side effects post.  It's here.

 

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cj, Community Member
11/14/08 12:17am

I've been on enbrel for over 2 1/2 years and it's working great.  I noticed a great improvement with the first couple of injections.  I continued taking methotrexate with the enbrel and the combination is working well together.  I hope you have the same results!!

 

God's grace to you and God Bless you!  (can I say that on this forum?)

cj

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Summer, Community Member
11/20/08 6:10pm

Hi CJ,

I've been in enbrel (1 shot a week) for 5 months now. I also take Leflunomide (1 a day) another inhibitor and nabumetone 1000 mg 2x a day) to keep the inflamation down. And only like 3x a month do I take a major narcotic to make myself more comfortable. (keep in mind tho I also take fish oil, rheumatol, a daily vitamin and consitently take very hot baths and keep my body warm) I was previosly taking Humira (which worked wonders for about 2 months but then tappered down) The ENBREL is working wonderfully and I saw an immediate improvement. Although these days it seems my worst days are the day before and the day of my shot, but none the less...its a great improvement from where i was.

I am also a HUGE advocate of what medications I put in my body, but stand your ground you have every right to know. I do a lot of research before I begin a new medication, my Dr. also gets frustrated with me. Good job on keeping track of what you intake. Keep it up!

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By Calamity Jane, Community Member— Last Modified: 12/11/13, First Published: 11/12/08