Started Enbrel

V, Health Guide

9/14/10 8:57am

Hi, Nan. I feel for you. I would be the same way, because biologics scare me. That being said, I would think it is a good thing that you haven't had any adverse reactions so far. Your doctor must think this is the right thing to do for you at this time. When I get stressed, I try to remind myself that there is no point in worrying over things I can't control. Doesn't always work, but I try to get my mind on this line of thought. Right now, your doctor thinks you need to try this drug, and he has your well-being in mind. So...I think you should try to relax and trust his judgement. If you have problems down the line, you can always stop the drug, right? Just be vigilant about side effects and keep your doctor informed. If you can keep your mind from concentrating on the possible side effects of this drug, you will lessen your anxiety level. Many, many people seem to do well on this medication. Take a deep breath, trust your doctor, be vigilant about side effects and try NOT to concentrate on the possible side effects. What is that saying...??? Something like, 90% of what we worry about never happens. I hope you are able to relax and put the fear at bay, Nan. Hang in there. You are in my prayers. Hope this helps a little. Peace, V

bucko27

9/14/10 1:51pm

Nan- I have been taking Enbrel since 2003 and I have to say it has been wonderful for me. I don't experience any side effects except occasionally being tired on the 2nd day after I take it. I do find that I have to take care of any little cut so it won't get infected and am careful about picking up germs by frequently washing my hands. You would never know I have RA by looking at me and my quality of life is excellent. I am hoping your experience will be the same.

Steve

Ish

9/14/10 2:15pm

Hi Nan,

As you know, this whole Enbrel thing has really weighed heavily on my mind. But here's the conclusion that I finally reached.... It's fine. It's okay. It's all good.

It suddenly occurred to me that I had almost all of the same reservations about starting Methotrexate. It all seemed so extreme... the worrisome side effects, being immune suppressed etc, etc, etc. So why is Enbrel any different? What's that saying? "It's the same, only different."

The main difference that I see is the side effects. Or more specifically, the lack thereof. Loving that!!

A word on injection site reactions. The first week (right leg), no reaction. The second week (left leg), no reaction. Third week (back to right leg), no reaction until the next day. And then it was a small warm red area that looked like a single hive. It was almost completely gone within a day. Apparently this is an expected reaction when you go back to the same leg, and this type of reaction should stop happening after about 3 months.

Have you noticed that everything in rheumatology seems to run in 3 month cycles? Try a drug for 3 months, then try it for a second 3 months, blood draws every 3 months.... Oops, I digress.

The bottom line Nan is that we're doing what we have to do. So I'll make you a deal. I'll make my brain quit running in circles if you quit wringing your hands. What do you say? Deal?

Ish

Nan

9/14/10 3:41pm

Thanks everyone, you are all right I know. I will be fine I'm sure and yes I did freak a little over all of the drugs. I keep trying to think about the possiblities of feeling alot better. Fall is coming and maybe working in the yard could be easier or walking at the park again. Maybe even moonwalking again with my daughter, hahahaha. My doc has not steered me wrong yet either. Thanks again everyone I do appreciate your help and concern alot.

Peg

9/16/10 9:13am

I appreciate this discussion - I'm going to start enbrel shortly (need to get some sinus issues straighted out first) and have this same feeling so it's been very refreshing to read everyone's thoughts and comments.

Ish

9/16/10 11:41am

Hi Peg,

It seems that a lot of are are starting down the same road right now.

I keep stomping down the anxiety with the hope that I'll get back to having some semblance of a life.

I think the term "biologic" is frightening. It really freaked me out. But if you read the list of side effects for other DMARDS like Methotrexate, the really bad/scary side effects of Enbrel aren't really any worse. But the daily side effects of Enbrel are waaaay more tolerable.

Good luck with the Enbrel!

Ish

Lene Andersen, Health Guide

9/16/10 11:52am

the way I look at it is that big problems require big solutions. That's number one, number two is asking myself how much my life is worth. How much are you willing to do in order to get through the day with manageable pain, able to do your work, be with your family, walk the dog, cook dinner, laugh with the people you love? and when I looked at it like that, it was a no-brainer. Enbrel can be a lifesaver.

yes, Enbrel is one of the big solutions and as such carry potential big risks, but the majority of people who are in Enbrel have very manageable side effects and I've known people who have been on this drawing for over 10 years and are still doing well. Bottom line, I suggest reading, getting back to what's important - i.e., living your life - and see how things go. You can always stop taking Enbrel down the road if you're not comfortable. But on the other hand, maybe a month or two from now, you'll be so busy living your life that you won't think twice about the shot. Keep us posted, please?

Nan

9/16/10 6:03pm

Your right about getting your life back. Thats what I hope this will do. I have gotten to the point where just daily activities are extremely challenging. When your afraid to clean your stove because your hurting its bad. And this flare was bad, it started Aug 31, and I'm still not all over it.

I did receive a call from the nurses at Enbrel today and they are sooooo nice. They offered to call and remind of my shot day or call to remind me when I should be placing my refill order. She offered any assistance I may require, going over the shot and safety tips, travel tips all sorts of things. She gave me her name and said just to ask for her if I need anything. WOW! that is so awesome, I don't get that much support from my doc. That has helped ease my mind alot.

Lene Andersen, Health Guide

9/16/10 7:49pm

Glad to hear it. Keeping my fingers crossed that this will work for you!

54 years with RA

9/16/10 10:55pm

I don't remember if I commented before, but I wanted to tell you, Nan, that I've been on Enbrel for 10 years, and never had one single solitary side effect except more infections, all of which were manageable and eventually cleared up. Just be extra careful about cuts or hangnails or things like that. I also have had to agree to take antibiotics when I might have not before the enbrel, just because things take longer to heal. Try not to worry and good, good luck. It has kept me out of a wheelchair.

54 years with RA

9/16/10 10:55pm

I don't remember if I commented before, but I wanted to tell you, Nan, that I've been on Enbrel for 10 years, and never had one single solitary side effect except more infections, all of which were manageable and eventually cleared up. Just be extra careful about cuts or hangnails or things like that. I also have had to agree to take antibiotics when I might have not before the enbrel, just because things take longer to heal. Try not to worry and good, good luck. It has kept me out of a wheelchair.

andrew

9/19/10 1:23pm

Nan, I'm hoping and praying that Enbrel is a wonder drug for you. While not everyone responds, it works for many. And despite your fears, it has a strong safety record for many years now.

Andrew

http://livingwithra.wordpress.com/

Rena

9/20/10 6:20am

Hey Nan! Good luck with the Enbrel. I just wanted to let you know that I started Enbrel in March and it has been the only thing that has really helped me. I feel better than I have felt in the last 4 years. It was a good thing for me and I hope it is a good thing for you. Good Luck! Keep us posted as to how it is going.

LAW

9/21/10 11:51am

Monitor Embrel very well. It is known to give heart failure on a video I saw last night. Make sure you do your blood tests and keep close contact with your doctor.

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