Monday, June 04, 2012 Buttercup, Community Member, asks

Q: What's the percentage of people who never respond properly to any treatment for their RA?

I was diagnosed in November and we don't seem to be getting anywhere. I'm on Methotrexate. Enbrel didn't help, Humira doesn't appear to be getting it either. My very nice Rheumy wants me to try Actemra, but I'm reluctant for several reasons. What are the odds, though, that I'm not going to respond to anything at all? I wonder if I should have a different diagnosis. Maybe he's completely wrong.
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Answers (4)
Carrie Beth Brown, Health Guide
6/ 7/12 3:58pm

If there is one thing I've learned from RA, it's that you need to have a great deal of patience in your life to be able to manage your disease. Everything takes time... time to see doctors, time to get test results, time for insurance to approve meds, time to test out meds to see if they work, rinse and repeat over and over. I know when I was first diagnosed, like you I wanted instant relief and it's really hard still to have to wait day after day, week after week, even month after month for something to make a difference in your pain levels, your ability to do things - particularly when you are trying to live your life, keep your family together, your job going, etc. Unfortunately, that's not the way this disease works. 


It took me about 10 months to get fairly stabilized when I was first diagnosed. Humira was my "magic potion" and it kept me going and working for about 4.5 years. Then it started to fail until one day, I was just too sick to move or do much of anything. That was a little over a year ago and I've gone through biologic after biologic trying to find something that will work for me. So far, no success. We're moving to Orencia next since all the TNFs have failed.


I also have an autoimmune liver disease, so I can't take many DMARDS that might increase the effectiveness, so that doesn't weight well in my favor. But with each new medication there is hope on the horizon, you just have to wait it through and give it enough time (usually 2-4 months) to see if its going to work for you. The waiting time is painful, frustrating and depressing but it is part of this disease that plagues us.


I hope you find some relief soon...and as hard as it is to wait for results, be patient with your body and yourself. You will find you're way with this disease. It's a different path for all of us, but you will find yours.  

BerserkeRA, Community Member
6/ 4/12 4:03pm

The biologics are all around 67%.  There is some research that indicates failing multiple biologics tends to lower your personal chances (but I believe that's just funny statistics).


You might ask about Orencia next, instead, but honestly, it's all about finding the one drug that will work.  Personally, I've tried: remicade, enbrel, humira, orencia with no luck.  MTX and Arava work like gang busters, but kill my liver...

Buttercup, Community Member
6/ 5/12 4:46pm

Thanks!  I think I'll ask him about Orencia.  I can take that without having to do infusions, right?  I've got a silly hangup about not wanting to be so sick that I require IV drugs.  (Yes I know I'm just kidding myself, but I have to at least try to maintain the delusion that I'll be FINE.)  


I'm fearful that I'll be amongst the 33% who don't respond to anything.  



Julie, Community Member
6/ 7/12 11:42am

I think that we are sisters of a different mother.....


I too have not responded well to Biologics plus all other RA drugs. 


I am currently on Orencia ( the infusion is usually only about 1 hr and not bad.  Use it as a time to rest) and reluctantly started Methotrexate a few months ago.  I wish that I had not been so reluctant on Mtx as it has helped.  I also have been on prednisone for years and am trying to taper off at this point.


I've asked my Rhumy why I'm not responding ?  "Am I just one of the LUCKY ONES?"  Just said yes.  So, what is next?  I am still having joint damage.  I had to have my other wrist fused l few months ago.


My worry, as probably you, is not to become disabled.


I wondering if you have other immune illnesses?  I have multiple; celiac, hypothyroid,along with RA and have developed Osteopenia (pre osteoperosis).  I think that their is a genetic trigger. 


I do have hope that and hear that research is advancing.


I do wish you good health. 



Buttercup, Community Member
6/ 7/12 3:20pm

When I saw the rheumy yesterday, he said that my inflammation markers are showing progress, and that I should actually start to feel better soon.  So we're sticking with the Humira for now, even though I haven't noticed a difference.  He swears I will.  I've promised to a nice pair of socks if he can get my hands comfortable enough to knit again! 


RA is my only autoimmune illness at this point.  I hope it stays that way, although it won't surprise me if there's something else going on.  I'm having some peripheral neuropathy that he believes is being caused by nerve compression and should decrease as the inflammation goes down.  I'll believe that when I see it! 

Julie, Community Member
6/ 7/12 4:28pm

Stick with it , it may take awhile for the Humira to work.


I had Neuopathy do to B-12 deficency; I believe do to medications such as Prilosec. It went away after I started taking B-12 shots.  See if you can get a blood test .


Be well.



Phillip, Community Member
6/ 7/12 2:34pm

Have you tried watching your diet. Somethings hurt and somethings. I have had RA since 1991. And like you nothing the Dr gave me nothing worked untill I changed my diet . I am now on a diet and Celabrex and am doing much better

Sugustion: Keep a journal about what you eat and how you feel next day soon you can see a pattern 

Buttercup, Community Member
6/ 7/12 3:24pm

My doc told me to avoid saturated fats, particularly animal fats and maintain a healthy diet, but he hasn't said I need to stay away from any sort of food in particular.  


I've read a lot of posts and seen a lot of things on the internet, and I'm baffled by it.  Some people swear by eating certain foods or not eating others, and some people say it makes no difference.  I guess I just need to experiment with it and keep a journal, as you suggest.  It certainly can't hurt me to eat a more healthy diet anyway!  What has worked for you?  

Phillip, Community Member
6/ 7/12 4:39pm

I have found litlle things like Orange juice Hurt Lemon Juice doen't

Red meat hurts, Do miss my bacon but it hurts also. Can do fish and fowl without problems. A friend is just reverse on the Juice thing . Kept a Journal for almost a year. Red meat was high on the list. Orange Chicken was low on the list Thought I could cheat HA/HA Good luck

Jessica, Community Member
6/16/12 4:50pm
I was dx'd at age 5, and I've been on Aspirin, Gold, Prednisone, all the NSAIDS, all the biological, and last week I began Actemera. Vioxx helped, but then it was taken off the market. Humira helped briefly and stopped working. Prednisone is the only drug that has consistantly helped, but I've suffered through terrible weight gain and numerous side-effects. Remission has begun to seem unreachable like a happily ever after Fairy Tale ending. I don't know statistics, but my own luck has been rather poor. I've tried everything modern Medicie has to offer and some alternative treatments too. At least I've tried. Reply
Libby22, Community Member
8/29/13 1:41am

Both the drugs you've tried are TNF alpha inhibitors. You may just need to try a different class of drugs. There are T cell inhibitors, B cell inhibitors, Interleukin -6 and Interleukin - 1 inhibitors.


Don't be scared to try infusion. It doesn't mean you're more sick - it just means the drug needs to be delivered in a different way. In fact, many infusion drugs eventually develop injection pens for home use.

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By Buttercup, Community Member— Last Modified: 08/29/13, First Published: 06/04/12