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Enbrel patients? Can you tell me your stories?

Posted , 5 users are following.

slm222
slm222

I'm hoping to start a clinical trial for Enbrel beginning in May (they need me on MTX for 3 months before I can start the trial) and am wondering if anyone that has used it or is on it currently can tell me how they're doing on it?

I woke up this morning with that heavy duty exhausted, malaise feeling that I felt for so many months before being diagnosed last summer. I had to work a mandatory training 40 hours last week, played catch up over the weekend and worked another 8 hours yesterday. I woke up to that heaviness in the chest; not a sick like heavy as in bronchitis or chest cold, but literally like someone was draining my insides out. I am emotional today and that's what happens when I get these episodes. 

Please someone tell me the Enbrel will help me. rolleyes

1 like, 9 replies

9 Replies

  • barbara58180
    barbara58180 slm222

    Posted

    Enbrel has helpped a lot of people--but it can also cause Multiple Sclorosis or something like that. It happened to me. I can no longer take any anti-TNF's .Orencia worked beautifully for me, but I had bronchitis all the time. The biologics are a little scarry- but they work really well for a lot of people.

    Good luck.

    • slm222
      slm222 barbara58180

      Posted

      Good Lord, it can cause MS?? What the??? Isn't there anything out there that helps without causing horrendous side effects!

      I'm so DONE with this disease already. sad

  • bill12447
    bill12447 slm222

    Posted

    Hi

    i have been on biologics for over 10 years and was one of the first in Derby uk to be put on remicade, in the early days due the unknown quantities of a new drug, I was asked to sign a form saying that I understood the risks of a possibly carcinogenic drug (as was thought at the time) I took the view that I would rather be pain free, and boy did that work. I then made the transition to Enbrel when it became available and have been self injecting for many years, with only the occasional flare. Anti TNF gave me back my life again and would say to anyone thinking of going on it, go for it, I have not looked back. As for it causing Multiple sclerosis well that's is not possible. You do need to be screened for tuberculosis, that may be where to confusion came from. Yes I have a few aches and pains, but I firmly believe that if the new treatments had not come along life would have been downhill not uphill as it is now.

    hope this helps

    Bill

    • slm222
      slm222 bill12447

      Posted

      Thank you so very much for your response, Bill. I really want something to work. Does it also work on the fatigue? I'm glad I have something to look forward to. Today is a bad day and I just want some hope. You've given that to me. Thanks again!
  • bill12447
    bill12447 slm222

    Posted

    Yes it does help me with the fatigue, although I still get it a bit. I should have also said that I have not been made aware of any cases of patients contracting serious disease due to the medication. I am monitored on a regular basis by my rheumatology department, who I have to say have been excellent, in the early days we had a rheumatology specialist nurse called Kate who was instrumental in the adoption of the new treatments, she was and still is the best thing to have happened to rheumatology in Derby. I hope Enbrel does well for you.

    regards

    Bill

     

  • tammierick
    tammierick slm222

    Posted

    I was on enbrel but it didn't do much for me. Humira was awesome it gave me my life back. I am now starting orencia and doing weekly injections and am hoping it helps like humira did. As far as biologics causing MS and other cancers...yes it is a risk. Here is my thinking. Of course i am not crazy about some of the stated risks. Being a nurse i am in tune but keep things in check when i read all the "horrible" possibilities. But do i want to be in horrible pain every day of my life???? NO If i were to be in pain like that every day you wonder how much a person would be able to take...and would i end my own life because i could no longer stand the pain....now no i am not thinking of ending my life but u have to wonder how much pain a person could mentally take and that is my reason for taking biologics or anything that will ease or stop the pain. I choose to take control back that this disease tries to take from us all and i am living life!!! Best of luck to you
    • slm222
      slm222 tammierick

      Posted

      Thank you Tammierick. Yes, I've heard that some people haven't had any luck with Enbrel and I'm a little worried about that, because I've already been on 2 meds that haven't worked for me. Initially I was put on Leflunomide that didn't do anything except help my feet. But at least it caused weight loss. cheesygrin  I'm now on MTX and I'm finding that a lot of the old pains that I didn't even reailze that the Leflunomide had taken away are back. AND I'm gaining weight. Ugh! Needless to say I'm feeling a little hopeless until I start the Enbrel. My Rheumy says that the DMARDS are not going to be my answer but the biologics will. I just hope she's right. Thanks for responding!
    • tammierick
      tammierick slm222

      Posted

      Dont give up hope!!! I am on my 6th medication. Tried some DMARDS and the biologics. I do respond better to the biologics. I am on orencia and am hopeful. We keep hanging in there and hoping. I wish you the best and that it gives your relief!!!.
  • Buckeyes
    Buckeyes slm222

    Posted

    Was diagnosed in November. Had severe pain in right forearm and after 2 trips to er and ortho docs  diagnosed with tendonitis.  Blood tests subsequently confirmed RA.  First put on prednisone and pain disappeared.  Next sulfasalazine and methotrexate.  Stopped sulphate snd put on enbrel.  Still have enormous swelling but no pain, although have achs in wrists.  Before I knew what I had I commented how tired I was.  Since then I still have bouts of no energy but not nearly as much as I had before.  Since the second injection of enbrel my pinkieand ring fingers on both hands are numb. Last visit to Rheumy suggested it wasn't working.  I am jealous that many of you are doing fine on your treatment.  

    I also felt the heaviness in my chest too, but it only happened a couple of times.  Like you I also felt like I was totally drained!

    From what I've read treatment is like a crap shoot.  I hope enbrel works for you.

    my husband is a chaffeure and drove a doctor last night who is an expert in ra and does speaking engagements to the medical field and told him that I'm not being treated aggressively enough.

    I wish there was more info on the Internet that was more detailed.  I'm glad I ran across this forum.  Maybe we all can learn more about this unexpected disease!

    i feel like this post is more about me than the questions you asked but hopefully it might shine a light on others.

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