Has anyone tried going off Enbrel, then back on? | Arthritis Information

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When I started taking Enbrel about 2 or 3 years ago, my doctor cautioned me that I needed to make a commitment to take it the rest of my life and not be tempted to go off of it. He said that some people feel so much better on Enbrel (or another biologic) that after awhile, they decide to go off of it. Then the RA flares again and when they try the biologic again, it's not nearly as effective.  I guess by just writing out this question, I've probably answered it for myself but I'd still like to know what others have experienced if they have stopped taking Enbrel (or one of the other biologics). Did you stay off of it? Did all your symptoms come back?  Did you go back on it? Was it effective again?  Thanks a lot for your input, I know it will help me decide what to do. I'm 64 now and I kind of hate the thought of being on this the rest of my life but I don't want to be crippled by going off of it either.  I've never been on it but my doctor has been trying to get me to try it and he said- just give it 2 months...if you don't feel better or don't like the way you feel on it then you can stop it. I'm sure he wouldn't be taking me off of my MTX tho. That is exactly what happened to me.  I was on Enbrel but had to go off of it for repeated infections.  I was on it for a month, then off for a couple of weeks.  It seemed that everytime I got back on it, it wasn't as effective as the time before.  I don't know about any other biologics as Enbrel is the only one I have been on.Charlie B~ I take enbrel and haven't stopped since I started, but my RD told me the same thing. I'm glad he did too, because it's easy to start thinking that you don't really need it anymore when it works so well.  If I didn't know that it might lose it's effectivness if I stop and restart, I'd have probably done it by now.To WanttobeRAfree---When I started on Enbrel, I was told it could take anywhere from 2 weeks to 3 months to take effect. In my case, it took 4 months----the doctor was just getting ready to prescribe Humira instead when the Enbrel finally "kicked in".Charlie- were you on anything else at the time? How bad were your symptoms? In my case on the maximum dosage of MTX I am no longer at the same comfort level as I once was. It seems to have lost effectiveness somewhat. I'm not in "flare like" pain but I don't feel well on a daily basis. He seems to think adding the biologic will get me feeling pre-RA. My gut says I'll never feel that way again and I've been weighing the risks against the possibility of feeling really good. Now this is weird but...I have become so accustomed to having daily pain on the rare occasion that I don't- I feel like something's wrong and I don't like it.Having had to stop repeatedly for infections and surgeries.. up to 6 weeks at one time... I have not found it to lose it's efficacy over the long term.. but it takes LONGER to get back to where I am feeling good. 

 
Just the last time I began taking enbrel after glaucoma surgeries, I felt the best I had ever felt and it was after a 6 week  stoppage...
 
This time, after a 3 week stop for pneumonia, I've dosed three times already and not really feeling good yet, but I am hopeful that once again enbrel will make me feel great!
I have stopped it after seven years of relief because it stopped working.  My rheumatologist says that my autoimmune system figured it out how to outsmart it.  She told me that after trying another biologic, I could go back on Enbrel.  So far Humira is not working for me but I only had the first injection last week.  I had great success with Enbrel but the damn RA "cracked the code."  [QUOTE=wanttobeRAfree]Charlie- were you on anything else at the time? How bad were your symptoms? In my case on the maximum dosage of MTX I am no longer at the same comfort level as I once was. It seems to have lost effectiveness somewhat. I'm not in "flare like" pain but I don't feel well on a daily basis. He seems to think adding the biologic will get me feeling pre-RA. My gut says I'll never feel that way again and I've been weighing the risks against the possibility of feeling really good. Now this is weird but...I have become so accustomed to having daily pain on the rare occasion that I don't- I feel like something's wrong and I don't like it.[/QUOTE]
 
Yes, I was on MTX and prednisone.  I was weaned off prednisone and do not take it now. I'm still on MTX (15 mg weekly).  I sure can relate to your quote---it sounds like my story. Back then, I could barely stand up from a sitting position, it hurt so bad. My hands were extremely painful. To be honest, even on Enbrel I don't feel like I did pre-RA but the improvement in pain is remarkable. I don't have a lot of stamina and fatigue easily. And the doc says Enbrel slows the progression of the disease as well as reducing inflammation.  I'm afraid to go off of it in that the severe pain will return but I'm also concerned about the effect such a heavy duty med has on the body long-term. 
 
All of the replies to my question have been very interesting and helpful--thanks to all of you. One of the things I'm dealing with right now is deciding what to do about my knees, both of which have severe OA. I really don't want to go through replacement surgery (already did that on one hip).
 
By the way, even though I use the user name of Charlie Brown, I'm a 64 year old woman, name is Linda. Charlie Brown was a nickname from years ago. 
 
Let me know what you decide to do about Enbrel, "wanttobe".  It sure helps to compare experiences. I think RA is very misunderstood by those who don't have it.  
 
Linda
I had to be taken off of Humira for a year and then restarted and was very happy to see that the results were just as good a year after stopping as they were when I first started it three years before. I was however on the max dose of MTX at the time.
 
We'll see how things go this time around. I'm having some surgery in October and have to stop Humira three weeks before the surgery and remain off of it for three weeks after. I'm worried because this time I do not take MTX it's only Humira and I'm barely getting 9 good days out of it now as it is. 6 weeks off of it won't be too good. I'm holding my breath that I'll be able to pick right back up where I leave off; but we'll see. I'm sort of afraid that once things get out of hand from the 6 weeks it's going to be pretty hard to catch back up.
 
 
 
 
I had to go off for an infection.  I hate taking all of the medicine, but I will be taking something for the rest of my life.
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