Failing TNF Blockers

andrew Community Member December 31, 2011
  • Happy Holidays to all! It's been quite some time since I've posted or even been to RA Central. It's good to be back. It's been a year of ups and downs for me. I had been on Humira for 1.5 years after being on Enbrel and Cimzia. A couple of months ago it became slowly evident that Humira just wasn't helping. I tried to ignore it (put fingers in ears and yell "la-la-la") but the reality set in one day when my orthopedic surgeon asked me..."But how are you feeling?" He had found bone erosion in my heel bone which resulted in a bone spur sticking into the back of the achilles tendon. He began to question the efficacy of Humira. Here was physical evidence of RA and I still wanted to ignore it. His question jolted me to my senses and I realized that joint pain and fatigue had crept back in over the past few months. And it took a non-rheumatologist to do this. Maybe it's like the frog slowly cooking in the heating pot. Surgery on my ankle was scheduled for the later part of November so I had to go off Humira. In the meantime, I saw my rheumatologist and he agreed that we needed to talk about Humira after surgery. But then I mentioned recurring swollen lymph nodes and he sent me off to an oncologist to check them out. Fortunately, a CT scan and blood work were all negative. But the blood work also showed that I had a positive rheumatoid factor test for the first time. I was no longer seronegative. A pathology report from the heel surgery also revealed that the erosion was caused by rheumatological processes. Everything was pointing to the fact that TNF blockers were not working for me. My oncologist admitted that TNF blockers aren't all they're advertised to be and mentioned that a fair amount of people are not helped by them (I'm happy for all of those who are helped by them). The surgery was successful in removing the damaged bone tissue, spur, bursa sac, and cleaning up the achilles tendon a little. I got through Christmas and can walk again without crutches. But now that I have been off any DMARD for almost two months, I'm feeling the full brunt of the RA. My rheumy and I had a discussion about what's next. He suggested that I need to move away from TNF blockers and wants me to try Orencia infusions which will begin next week. I know studies show that after failing two TNF blockers, the chance of a 3rd one helping drops dramatically so I know I'm beyond that. In some ways I'm glad to be moving to trying Orencia as it operates on a different part of the RA biological processes. I'm looking forward to getting back to feeling more "normal." On the other hand, I feel like I'm looking back at TNF blockers and moving up the list of possible RA treatments. There is an end in sight after Orencia...Actemera, Rituxan...that's about it except for some new kinase inhibitors that may hit the market sometime soon. So, here's to a new year and a new treatment, Orencia, and hoping that it works for me. And here's also to a new RA treatments and even a cure someday. Happy New Year, Andrew
10 Comments
  • Tina
    Jan. 05, 2012

    Wow...do I know a bit about Humira. I was on Humira for 4 years with a weekly dose as the recommended q2weeks wasn't effective. I had both knees replaced march and april of 2011 so had to be off the Humira. Little did I know that once you go OFF the meds then you can build up antibodies to Humira. So long story short the Humira didn't work after going back...

    RHMLucky777

    Read More

    Wow...do I know a bit about Humira. I was on Humira for 4 years with a weekly dose as the recommended q2weeks wasn't effective. I had both knees replaced march and april of 2011 so had to be off the Humira. Little did I know that once you go OFF the meds then you can build up antibodies to Humira. So long story short the Humira didn't work after going back on it 2 months after surgury. I now take Kinerit, its every day injection, and so far my flares are not too bad. I just hope it works for a long time!

  • Nanamom
    Jan. 05, 2012

    I have been on humira a few months.  I can't tell any change.  What exactly is it suppose to do.  I am on MTX one shot a week.  The humira I take a shot every other week.  I just don't know if it is working.  I have not seen or felt any changes.

    • V
      V
      Health Guide
      Jan. 07, 2012

      Hi, Nana,

       

      I have been on Humira since Sept 6th. I didn't notice much for the first two or three months.  What it does do for me is relieve the fatigue and the "sick" feeling. Unfortunately, so far, it doesn't last two weeks...only about 8 days, so when I go back to the doc in March, she may change my dosing schedule.  She is happy with it though...

      RHMLucky777

      Read More

      Hi, Nana,

       

      I have been on Humira since Sept 6th. I didn't notice much for the first two or three months.  What it does do for me is relieve the fatigue and the "sick" feeling. Unfortunately, so far, it doesn't last two weeks...only about 8 days, so when I go back to the doc in March, she may change my dosing schedule.  She is happy with it though because my CRP was very high, and she was worried about my heart.  I have had high bp for years and heart issues run on both sides of my family. She is happy because Humira has cut my CRP in half...still too high, but much, much better.

       

      V

    • Nanamom
      Jan. 07, 2012
      Thanks V, I have been on it for maybe 5 months. I only take it every other week. I can't tell if it is making any difference. This is for anyone that wants to answer. Who does your blood work, rhuemmy or famiy doc? Right now no one is doing mine. Also do you all have chest x rays every year, if so, who orders that? Thanks, Nana
    • V
      V
      Health Guide
      Jan. 08, 2012

      Hi, Nana,

       

      My RD orders a Liver Function, CBC, SED rate, CRP and something else I can't remember right now every two to three months.  I see her every two to three months, so she wants the test before my appt.  I always have the lab send a copy of the results to my PCP.  My PCP runs a complete metabolic panel, CBC, Thyroid, and lots of...

      RHMLucky777

      Read More

      Hi, Nana,

       

      My RD orders a Liver Function, CBC, SED rate, CRP and something else I can't remember right now every two to three months.  I see her every two to three months, so she wants the test before my appt.  I always have the lab send a copy of the results to my PCP.  My PCP runs a complete metabolic panel, CBC, Thyroid, and lots of other stuff twice a year because I take statins and I have some other helath issues.  I have the lab send a copy of that bloodwork to my RD.  That way, both are on the same page.  I had a TB test before starting a biologic...I did not have a chest xray.  I don't think they like to order chest xrays unless they suspect a problem...???

       

      V

    • Nanamom
      Feb. 29, 2012

      Hi V, the chest xrays are for the MTX!!  Tina, Ihope this other medicine works for you.

       

      Have the bst day you can, Nana

    • Nanamom
      Jan. 07, 2012

      Thanks V, I have been on it for maybe 5 months. I only take it every other week. I can't tell if it is making any difference. This is for anyone that wants to answer. Who does your blood work, rhuemmy or famiy doc? Right now no one is doing mine. Also do you all have chest x rays every year, if so, who orders that? Thanks, Nana

  • Laurie
    Jan. 05, 2012

    Thanks so! Andrew

     

    I've been on Humira for about 6 months and the side effects are getting out of hand.  Joint pain has become second nature; I thought it was a given that I'll always live with it coming & going - but the side effects sometimes are worse than the illness.  I hope to stay on it a few more months, but like you, all meds only...

    RHMLucky777

    Read More

    Thanks so! Andrew

     

    I've been on Humira for about 6 months and the side effects are getting out of hand.  Joint pain has become second nature; I thought it was a given that I'll always live with it coming & going - but the side effects sometimes are worse than the illness.  I hope to stay on it a few more months, but like you, all meds only take some time and then slowly stop working for me.  When I asked my rheumie about the 'aggressive' part of my label 'aggressive RA' - this is what she said, that the meds stop working for me after just some months whereas most folks with RA stay on the same meds for years, usually metx.  and no further.

     

    I'm glad to talk to someone like me.  It's frustrating, but more so, it's withering.  Thanks so for sharing your life with us.

    Laurie

  • Rosie
    Jan. 05, 2012

    I am so sorry for you.  After decades of little relief, I am so grateful to be on Enbrel.  It has been a miracle drug for me.  Something that has really helped me physically is the decision to give up gluten.  You will find many studies about gluten and rheumatoid arthritis.  It will not cure you, but it is worth a shot as you go on...

    RHMLucky777

    Read More

    I am so sorry for you.  After decades of little relief, I am so grateful to be on Enbrel.  It has been a miracle drug for me.  Something that has really helped me physically is the decision to give up gluten.  You will find many studies about gluten and rheumatoid arthritis.  It will not cure you, but it is worth a shot as you go on to the next level of medication.  NEVER GIVE UP!

  • Anonymous
    Pam
    Jan. 05, 2012

    Andrew, I have been going through the same thing with Humira, in the spring of last year I learned that Humira was no longer working for me also (after 2 1/2 years). The pain and lack of movement made it evident. My Rhumie has changed me over to Actemera, but for two months I was unable to use anything and I can truthfully say it was the worst two months I...

    RHMLucky777

    Read More

    Andrew, I have been going through the same thing with Humira, in the spring of last year I learned that Humira was no longer working for me also (after 2 1/2 years). The pain and lack of movement made it evident. My Rhumie has changed me over to Actemera, but for two months I was unable to use anything and I can truthfully say it was the worst two months I have had. Actemera is kind of working, it has been lasting about 2 1/2 to 3 weeks, so last month they increased the dosage.  This month I am in week three and it is much better but still not right, hopefully after a few months it will last the month that they promise.  I hope that the Orencia works for you and that you will be doing better soon.

Live Bold, Live Now Living With Rheumatoid Arthritis