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Failed Enbrel

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Posted 5/12/2007 2:06 AM (GMT 0)
Well, I haven't responded to Enbrel and it has been 15 or more weeks and still needing prednisone to get through the day.  I decided not to refill it.  Called the doc and informed them aswell.  Considering stopping everything but the pred for now.  Kinda getting pretty down about all this.  Gaining weight because of the pred, then can't exercise because I hurt, eating like a pig because my mind thinks it is starving and did a blood sugar check and now that is up.  Random checks 233 and 165.  OOOH yeah.  Why not add one more thing to the list.  Most likely it is just the steroids but if I can't get off them then what?  I am considering stopping all meds and getting the lap band or something....

Theresa

Posted 5/12/2007 2:28 AM (GMT 0)
Hey Theresa,

Sorry to hear the Enbrel didn't work. What did your rheumatologist suggest to try next? Don't give up. My son tried Humira, Enbrel & Remicade and none of them worked. Eventually went back to Remicade and this time it seems to be working, but they increased the dosage. His rheumatologist mentioned Kineret or Rituxan if the Remicade didn't work second time around.

Take care,
-Jem
Posted 5/12/2007 6:42 AM (GMT 0)
Bloo......I am so sorry. I was hoping it would work for you. Have you been back to the doctor? Has he suggested anything else? I am off the prednisone and I hope to never try it again. I was on it for the better part of the last year and a half. I felt like I was addicted. It was like a rollercoaster ride up down. My doctor would want to decrease it and I would have a flare. I ended needing to go down one milligram at a time and stayed on each decrease for a month. I don't want to do that again. I have been on the Enbrel for a couple of months. I am not as better as I would like to be and I have had two infections and feel like I have been sick for most of the two months. I was good enough to take a vacation though. I hope they work hard I find you some relief. }}}}}}}healing vibes{{{{{{{{
Posted 5/13/2007 5:33 AM (GMT 0)
awe...hang in there. i tried enbrel for 2 years, humira 2 years & now remicade since october. nice thing is that NOW we have options...not just like one shot deals anymore.
keep going! don't let this discourage you too much...lots more paths to take.
Posted 5/14/2007 1:17 PM (GMT 0)
Stay tough, keep asking questions, make your Rheumy earn their money.

Something will work ... good luck ... Craig
Posted 5/14/2007 2:14 PM (GMT 0)
Hi bloo,

I'm sorry the enbrel is not working, and I know others have mentioned remicade etc, and I don't know if you have tried those? Please keep working with your doctor or maybe get another opinion? I know my doctor is not fond of pred! He gave me a script for 5mg and told me I could go up to 10mg and when that wasn't working I went up on my own and he wasn't going to do it, even when I told him that 20 to 25mg worked great! I soooo know what you mean by the pred working!!! It works like nothing else! I could not make him understand, the times I would hurt so badly and a good dose of pred and I felt no pain! He would not give me another script for pred.

I have also told my rheumy that I can't excercise and he tells me it is because my arthritis is not under control! So I know how frustrated you are bloo!!

I know we are always so hopeful when we start a new med, thinking this has got to work, especially once we get into the more serious medications and when it doesn't, it is hard to stay positive. Hang in there bloo, and like the others said, don't give up.

Gentle hugs to you :)
Posted 5/15/2007 1:10 PM (GMT 0)

Hi BB I too have failed remicade, humira and enbrel and apparently the last option now available is rituximab. Its given over two injections, 2 weeks apart and each one takes 7 hours approx. Like you I'm still swallowing 25mg pred daily and the pain is very bad. I've put on 40 kg in the past 2 years. I went to see surgeon for lapband procedure. He said he would do it but only if I could reduce the prednisolone to 5mg daily. He seemed to think it would defeat the purpose. It seems everyone has a different opinion on why pred makes us fat. Some say it makes you binge, others say it holds all your fluids or another is that it slows down your metabolism. Anyhow, there is no way I can reduce preds so wont be going down that path. I'm trying natural things for the next three months before I commit to rituximab. I've never been down the natural pathway so thought I should give it a go. I've had so many side effects with all the other meds I'm getting very sceptical. Like you everyone says dont give up and they are right. If the next meds dont work they are developing them very fast these days and a cure may just be around the corner. Heres hoping. Checkym eyes

Posted 5/15/2007 11:23 PM (GMT 0)
hugs to all who posted on this one esp bloo. hang in there and like everyone has said dont give up. we r all a bit different and respond differently. i know though that hope u put into a med. i am doing thast right now with the enbrel. it is all my hope for a brighter future. but know there is more choices like erin stated go talk to ur rhuemmy u'll find an answer. i KNOW prednisone is a great get through it drug but i agree with harley it is hard to get off cuz of the pain u feel when u try. good luck and know we r all routing for u hugs yalin
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