Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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MommaAshley 01/21/2013

So I put all my hopes into enbrel. Prayed hard that it would be the thing to stop or lessen my RA. Talked to so many people who said it helped get them back to a normal life. I have taken a total of 2 shots, thats it...2. I had a really hard weekend with terrible fatigue, joint pain, muscle pain and felt my face burning a little. Got up this morning, was washing my hands and happened to look at my face in the mirror.....very distinct butterfly rash....from ear to ear, Apparently enbrel has caused a drug induced lupus. I am waiting to hear back from my rheumy to figure out what the heck I am going to do. I am getting so tired of being a medical oddball. Why can't I get to a place where I have better quality of life??? I just want to get better.....

Lisa-Witt 01/21/2013

I'm sorry.

bcatz 01/21/2013

There are non tnf inhibitor biologics. You can still get better!

deleted_user 01/21/2013

Dont give up hope my friend, something ( the right combination of meds) will be found to help you . Praying for you .

MommaAshley 01/21/2013

Thanks....just really down about it. Another bump in the road I guess

deleted_user 01/21/2013

Embers didn't work for me either. But humira was a god-send. Keep your chin up, you'll find something!

deleted_user 01/21/2013

Oh boy, do I know how that goes! I was on Minocycline for a year after I was first diagnosed and had reached full remission. then one day I got a "cold". It progressed over a couple of weeks to the point where I couldn't breathe. Turned out I actually had Minocycline-Induced Pnuemonitis. I was in the hospital for a week and on oxygen for about 6 weeks. The worst part was that I could no longer take the medication that had "cured" me. : ( These days I'm much better though. I've come a long way and I'm doing really well on a cocktail of MTX, Humira, and Celebrex. It's not ideal, but I'm living a relatively normal life. Don't give up. Things can get better.

me2012 01/21/2013

I havent experienced some of the awful reactions that I have read about on this site. However I can relate to your frustration with not seeing the results you are so desperate to find. Dont give up hope. I pray that better days are ahead for you.
Jenn

deleted_user 01/21/2013

I'm so sorry. I know how it feels to come up against a brick wall over and over again, trying to get some relief. I'm right there with you. After I failed Enbrel, my rhuemy put me on Actemra. Maybe you could try that?

Angelpuss 01/22/2013

Same thing happened to me with Enbrel and, according to my Rheumy, it is an extremely rare reaction. The Lupus should go once you have stopped Enbrel for about two weeks.
I was changed to Orencia three months ago but it hasn't helped all that much. Next thing my Rheumy will try is Actemera - infusion once a month.
I know how you feel. The only RA drug I have been able to keep taking is MTX but, by itself, it isn't working well enough to control my RA. I'm now 3+years since diagnosis and still waiting for my magic "cocktail of meds".
Hugs from another oddball. Lol

MommaAshley 01/22/2013

Thank you all. I just heard back from my rheumy and she cant see me for 2 weeks. The nurse was really rude to me. I'm so tired of fighting. i had to fight for months to get enbrel, and now I am having to fight the doctor's office. I was trying to tell the nurse about the burning on my face and the severe pain I had over the weekend and she totally blew me off. I already had an appointment scheduled on the 12th of feb, and she said after a long sign "I guess we can move you up to the 7th, but that is difficult because we have to work you in". I'm sorry my rare reaction has caused such a kink in her schedule. Sometimes I feel like I'm one of those "problem patients" the office doesnt want to deal with.

altoclef 01/22/2013

I had this happen with Humira, after only a week or two. Never got an answer as to whether or not it had to do with the dreaded "L" word or was just some other type of allergy. My doctor put something in my chart about my "reporting" I had the reddening of my face. After an 87-year-old, legally blind friend asked why my face was so red I knew I wasn't overreacting or making things up!

Have you had this rash before? I have, although it doesn't last as long as it did from Humira.

Christine26 01/23/2013

Oh, I am so sorry. Sometimes it takes a while to find the right combo for you. Don't give up hope even though it can be disheartening.

MommaAshley 01/23/2013

Thank you all, it is very frustrating, but my outlook this morning is a little brighter...one step at a time. I have some rosacea on my jawline on both sides of my face, but the color and texture of the new rash is different, one that I have never had before. It will go through periods of a tingly feeling then a light burning sensation. Sometimes it is really noticeable, other times it is very light, but still there.

deleted_user 01/23/2013

Extremely sorry hearing this, as Enbrel is a great med. for me. I have severe R.A.. Don't anticipate ever having the quality of life as say, 10 yrs ago.. Age is a factor also. I along w/ most I'm sure have tried many meds. that don't work. Pray you find the right one for you. Just stay on top of watching for side effects.And never be in denile. Denile is a #1 sign of any problem. God Bless.

deleted_user 01/23/2013

i'm sorry you're going through this. i was allergic to enbrel as well. and since your doctor can't fit you in until 2/7, and they're treating you like you're causing problems by complaining about your severe reaction, if i were you i'd take pictures of your rash right now while you still have it and show it to the doctor at your appointment so that he knows you're not making it up or overreacting to a minor problem. then maybe the office will shut up about having to move your appointment up a week since you had a severe allergic reaction.

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