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

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.