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Old 07-29-2004, 01:15 PM   #1
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Enbrel users - ever have flare-ups in spite of Enbrel?

I've been on Enbrel for my RA for almost 2 years now with wonderful results. I've been flare-up free, joint damage stopped, back to living an almost normal life. Even reducing the other meds (methotrexate and plaquenil).

Suddenly my undamaged hand is experiencing swelling, redness and stiffness. I'm literally scared to death. Enbrel users, do you ever have an occasional flare-up in spite of the wonders of this drug?

 
Old 07-29-2004, 03:55 PM   #2
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Re: Enbrel users - ever have flare-ups in spite of Enbrel?

Is there a remote possibility that your body has adjusted to the Enbrel as it would other medications? If it continues it definately deems getting looked at.

 
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Old 07-30-2004, 05:38 AM   #3
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Re: Enbrel users - ever have flare-ups in spite of Enbrel?

I wanted to report back just in case others research "Enbrel" on the boards. I am pleased to say that I iced my flared up hand last night and went back to full dosage on my other meds. When I awoke this morning my hand is just about back to normal.

WHEW

My rheumy is out of town, so I called Enliven Services (Enbrel support hotline) and asked to speak to a registered nurse. She did confirm that RA sufferers can experience a breakthrough flare while on Enbrel. The immune system is determined and my body probably started to produce more TNF, the chemical that Enbrel counteracts.

In retrospect, I've been under severe emotional stress lately over several non-arthritis, life-related issues and think I need to step back and try not to let the stress undermine my progress.

 
Old 07-31-2004, 03:51 AM   #4
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Re: Enbrel users - ever have flare-ups in spite of Enbrel?

Hi VeggieQueen!

I just stumbled across this board. I hope it's ok to give my history - I was diagnosed with RA about 8 years ago. My RA doc was a real jerk - first meeting he told me I would be in a wheelchair in 5 years! We tried several things, including Methotrexate, nothing worked (but all made me sick as a dog). I gave up, and "explored" on my own. I found that eliminating meat, and especially dairy, helped immensely. I'm a "version" of vegan now, I only eat fish and veggies - I find that fish does help.

But as someone else said, everything has a "half-life". For example, I went on oxycontin (I have sever erosions) and it caused a remission for at least a year! I was avoiding Enbrel because, frankly, if it quits working after a couple of years I don't know what I would do - on my birthday this year, I was in a really bad flair, and my RA docs nurses wouldn't give me Prednisone (the only thing that works). I decided that the shots, and risks at this time wasn't so bad. I could hardly move, or get out of bed. I'm single, and it was incredibly frightening.

I go on Enbrel next week. Are the shots a real drag? How long did it take before you felt relief?

Sorry for the long post - I don't 'complain' to anyone, and I don't know anyone with RA. Most of the time, especially with work, I try very hard to hide my limping etc.

Thanks!

 
Old 07-31-2004, 01:34 PM   #5
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Re: Enbrel users - ever have flare-ups in spite of Enbrel?

Hey Advice Seeker,

Sorry your rheumey is a jerk. My original one was a semi-jerk and the one I have now is basically out to lunch! We really have to take this bull by the horns and get all the information we can.

Giving yourself the injections is really not so bad. It's kind of freaky at first. Some months back they introduced a new, super slender needle and most injections I honestly don't even feel it.

My experience with Enbrel has been very positive. At first I was very, very tired. And then very slowly, so slow I almost didn't realize it, I was no longer fatigued all the time. When I got up in the morning I could walk right out and turn on the coffee pot without shuffling like The Mummy. I stopped getting swollen lymph nodes in my armpits and groin and stopped having those low grade fevers and flu feeling.

It took about 3 months for me. But there were gradual improvements. I like to analogize it to someone who joins Weight Watchers. You see them very heavy, a few weeks later you bump into them in the store and ask yourself, "hmm, does she look smaller?" Then 3 months later you see her and say "WOW! Look at you!" To her, in the mirror, she doesn't look so much better because it was gradual. But to you, she's a new person.

I've had RA for 10 years now and I do still have to take my methotrexate but am down to 2 pills per week. I also take Voltarin once or twice per day and am weaning off Plaquenil. I wish you well with your Enbrel. Make sure your doctor teaches you how to inject, and also be aware that the registered nurses at Enliven Services are a fantastic resource.

 
Old 08-02-2004, 03:18 AM   #6
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Re: Enbrel users - ever have flare-ups in spite of Enbrel?

Hi! I was looking up tumors of the urinary tract for my sister and stumbled on this. I saw this Enbrel thread and thought I would mention I am on Enbrel, but I am only on my second month.

I too have had tremendous fatigue but it is lifting somewhat. I noticed a difference right away ( ie, pain and stiffness not as bad) and I do have huge site reactions but they diminish in about a week or two. Oh how they itch!!!!

I also have something like hotflashes, and become feverish sometimes, but do ok with it.

I am just thankful for Enbrel and thankful that my insurance covers it. I am all out of options on meds at this point so I was relieved that Enbrel is producing some results. I may request to my RD to add Minocin in since my glands swell so badly, but he is being very cautious at this time because I have had so many bad reactions to all the meds.

Glad this post was here.

JDRKIDS

 
Old 08-02-2004, 03:20 AM   #7
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Re: Enbrel users - ever have flare-ups in spite of Enbrel?

Ooops, failed to mention I do have flare-ups and I do feel better when I stick to veggies.

 
Old 12-18-2010, 02:17 PM   #8
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Re: Enbrel users - ever have flare-ups in spite of Enbrel?

Hi what is the enliven 24/7 phone # cant seem to find it???

 
Old 12-18-2010, 02:41 PM   #9
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Re: Enbrel users - ever have flare-ups in spite of Enbrel?

Quote:
Originally Posted by JDRkids View Post
Ooops, failed to mention I do have flare-ups and I do feel better when I stick to veggies.
Hi JDRkids,

I found your comment of feeling better when you stick to veggies interesting. Because, in the summer (before starting MTX for RA) the only thing that seemed to relieve the discomfort in my hands and feet was limiting my diet to only fruits and vegetables. I found I reacted badly, in particular, to poultry, eggs and grains. I'd be interested to know how restricted your diet is. Thanks.

 
Old 12-19-2010, 02:42 PM   #10
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Re: Enbrel users - ever have flare-ups in spite of Enbrel?

Hi alicia22. In case you didn't notice, this post was from 2004 so I don't know if these folks even post anymore or if any number 6+years old would still be valid.

I guess we'll just have to see.

hugs..............Jenny

 
Old 12-21-2010, 07:44 AM   #11
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Re: Enbrel users - ever have flare-ups in spite of Enbrel?

Unfortunately this is "normal" according to my RA DR and research I done. Due to body tolerance people experience flares all the time. You were lucky, very lucky in fact that Enbrel worked for you for 2 years.
For example, I was on Meth in the beginning: was making me very ill, but did not help with RA at all. Then Enbrel: I felt better for a month and then back to square one, then Orencia monthly fusions. I was good for 9 month and back to square one. Now I am on Humira for 4 month and so far so good.
But I have to report any changes to worse and she gives me another couple of weeks to try again and if nothing works, she changes my meds.
Another thing for everyone here!!!!! Check your fever at night mostly;sweats, swollen glands... Even low grade fever (if you did not have it before treatments) can alarm your DR to check you for possible side effects. Biological meds as we all know can have terrible side effects and we have to be aware of this.
Best of luck to you. We are lucky that they have so many different meds on a market now, so at least we have a choice...
Moldova

 
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