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TNF Blockers - failing them all....

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Rheumatoid Arthritis
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Posted 5/26/2012 8:24 PM (GMT 0)
Hi all,
I am new here. Just joined. I have RA and was finally given that news in December of 2003. I meet with my first Rhuemy in April of 2004 and was started on Remicade and Methotrexate. I was only on this a short time as my Liver enzymes were in the 500's and had to stop immediately. I have been on the almost whole Boilogics that are out there and the list of ones to use are starting to get short. I do not do well on TNF blockers. I respond well at first and then my body starts to fail the drug, I will go into a flare where I can not move, I become swollen, stiff, and unable to function, I have to go and get steroid shots in order to get the flare to stop. I am already at 3 this year, so yet another RA drug failed this one was Simponi. I have tried Humeria, Actemra (which I did so so on but can not take due to insurance issues!!!!) Orencia(worked 4 years and then stopped), Enbrel, and these are the ones I can remember off the top of my head at the moment. I am sure I have missed a few......this is not fun at all.

I am awaiting approval to start Cimzia, it has to be approved by the insurance company of course!!! I still take Methotrexate .4cc every week on a Wed.

Are there others that suffer from this too???? I am running out of options and fear of becoming crippled as my mothers form of RA is a rather aggressive one and it is just not in some of my joints but ALL of them. I have been dealing with this for the last nine years, I am not one to give up but I just feel so drained and want my life back. I am still very young to be going through this and just want answers
to get me thru this rough patch right now.

To make matters more interesting I have just been told I have Microscopic Colitis. I have had diarrhea since April 3rd, 2012.
So, I am asking if there is another person out there like me please get in touch with me, would love to learn and share to get help!!!!
Thanks, Daffodils.....
Posted 5/31/2012 11:10 PM (GMT 0)
Hello, Daffodils,

RA is such a complicated disease, and it affects each of us differently. Sounds like your body may be making antibodies to the RA meds...??? I wonder if you fail every other drug, if your doc could convince your insurance to pay for the Actemra that was working for you. What other RA meds do you take? Sorry you are in this situation. Please don't feel as though you are alone. There are a lot of us out here with RA and other health issues. I told my husband the other day that having RA and trying to manage it is a full time job.

Blessings,
V
Posted 6/2/2012 4:27 PM (GMT 0)
 

Hi!  Sorryto hear that you are going through a rough time  I haven't found any biologics that work for me really.  20 or 30 percent at best.  I thank God that I started on the old drugs first(since bios didn't exist).  The few that actually worked for me, delayed most of the visible deformites. 

I've been on the TNF(bios) for about 6 years after the Imuran stopped working.  It has only been about the last 3 years that the visible deformities started showing.  I did try some of the old drugs that worked before but they didn't work the second time around.  I'm still considering trying the gold shots again since it worked well for me.  But it probably won't won't work the second time either.  I truly feel for you Daffodils and wish the best to you.

Posted 6/4/2012 2:23 PM (GMT 0)
Sorry to hear you have been on so many different meds! There are many different bio's and I've only taken the Enbrel so I have no experience with any of the others. Have you tried Plaquenil? It isn't a bio, but it is good and works well with the MTX and sometimes if you toss in a bio with it, it can be a really great cocktail of meds, if that is possible.

I know it is all about trial and error and that alone can be exhausting and frustrating, because you just want *something* to work!! Some weeks my husband gives me my shot and I feel the same as before, it's as if I am on no meds. Ridiculous! Please know you are not alone.

Posted 1/20/2015 4:42 PM (GMT 0)
Hey Daffodils, what is happening with you now (a number of years later)? Hope you are out there to reply.
I have taken about 6 or 7 biologics. Some work for a while, some never work, and some work but have too
many side effects. I've had RA for 25 years. I was recently diagnosed with microscopic colitis. Nothing works for that either! Sure would like to know if anything has worked for your RA and/or microscopic colitis.
Posted 1/27/2015 2:36 AM (GMT 0)
Hey Daffodils! I completely understand what you are experiencing. I am now on Rituxan or what my rheumatologist calls my "last" drug. I have literally been on everything else at one time or another in the last 15 years. I am now also on a daily dose of prednisone which has sent my blood sugar through the roof. and I spent the past year (October 201-September 2014) in and out of the hospital 6 times due to getting c. difficile colitis in my colon and having to have 90% of my colon removed. I spent 5 months with an ileostomy letting my colon heal then had another surgery to put the 10% left of my colon back together so I understand the diarrhea. That is my life now. Not much colon and colitis plus RA makes life so hard. Please let me hear from you. I don't get on the forum every day but I will look for your posts. Hang in there! We need to encourage and support each other. The rest of the outside world doesn't really "get" it. Please take care of yourself!
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