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View Full Version : Enbrel users - ever have flare-ups in spite of Enbrel?


VeggieQueen58
07-29-2004, 04:15 PM
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?

Kissa
07-29-2004, 06:55 PM
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.

VeggieQueen58
07-30-2004, 08:38 AM
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 :bouncing:

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.

Advice_Seeker_9
07-31-2004, 06:51 AM
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!

VeggieQueen58
07-31-2004, 04:34 PM
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.

JDRkids
08-02-2004, 06:18 AM
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

JDRkids
08-02-2004, 06:20 AM
Ooops, failed to mention I do have flare-ups and I do feel better when I stick to veggies.

 
 
 




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