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Joined: Jun 2007
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Hi,

My question for you:
For anyone who was on Humira and had it stop working, what medications did you try that were effective?
I realize that everyone is different and what worked for one person my not work for me, but I am still interested in input.

My 'brief' background:
It has been a couple years since I was here last. I had been diagnosed with AS my sophomore year of college and went on Humira. After getting sick a few times and going off and on Humira, it stopped worked. (When it worked, I was in the least pain I've been in for the past 6 1/2 years since it started.) I saw another specialist who said Humira COULDN'T stop working and diagnosed me with fibromyalgia instead.
I then went to a pain clinic and they gave me RF nerve blocks in my L3-S1 which worked great. I was able to go back to grad school. I just had the procedure repeated a couple weeks ago, and it has not helped at all yet, which could be a variety of reasons.
Last year I had x-rays that showed arthritis in my SI joint, but they were waiting to see if it progressed before they say that I have AS. I just had a CT last month that showed more arthritis.
I am going to my follow up appt. tomorrow to find out exactly what it means. If they say the progression of arthritis is signs of AS, I want to go back on a medication to slow the progression.

Thanks for your time,
Anne

Joined: Apr 2002
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Hi Anne,

I have no personal experience on Humira, but have been taking the similar biologic, Remicade, for 6+ yrs.

Quote:
I saw another specialist who said Humira COULDN'T stop working and diagnosed me with fibromyalgia instead.


Wow! Really surprised that a specialist would say that - from what I've read, I don't believe that info is accurate. For them to change their mind about your diagnosis, based on the fact that it was working and later stopped working - that seems ridiculous to me! Do they really admit to exposing you to a medication inappropriately? Very odd. I really doubt that you have Fibro.

Some people do apparently develop antibodies against the biologics, which results in the medication losing it beneficial effects. You might be interested in reading the following (and perhaps taking a copy to your specialist!)

Link is to the JAMA website (Journal of American Medical Association):
JAMA. 2011;305(14):1460-1468. doi: 10.1001/jama.2011.406
Geertje M. Bartelds, MD; Charlotte L. M. Krieckaert, MD; Michael T. Nurmohamed, MD, PhD; Pauline A. van Schouwenburg, MSc; Willem F. Lems, MD, PhD; Jos W. R. Twisk, PhD; Ben A. C. Dijkmans, MD, PhD; Lucien Aarden, PhD; Gerrit Jan Wolbink, MD, PhD

Development of Antidrug Antibodies Again...-term Follow-up

"To examine the course of antidrug antibody formation against fully human monoclonal antibody adalimumab and its clinical relevance during long-term (3-year) follow-up of patients with rheumatoid arthritis (RA)."


Although this article was a study on RA patients, the same is true in AS patients although the actual percentages differ. I think it is a very small percentage for those on Humira but I believe it can happen.

The good news is that since you did respond well initially to one biologic, then you are apt to respond well to another.

Best of luck at your follow-up appt!!
mig

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Hi Anne,

I've been on remicade for 4 years now and until recently, it was working great for me. I am in a flare right now, so obviously something has changed. Just had an infusion today, and if it isn't helpful then I'll be trying humira.

Had a conversation with my rheumy today about how these medications can lose efficacy. You're the customer. If you don't like your rheumy you are entitled to consult another.

Best of luck to you.


Molly

~Fear and love cannot occupy the same space

HLA-B27 and loving it
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I have been taking Humira for a little over a year. At first it was wonderful and for the first Time in years, I was almost pain free. a few months ago it started to become less effective until now, I am almost as bad as I was before I started Humira. I have talked to my Rheumy and he says I need to switch to another TNF blocker, either Remicade or Enbrel. If your Rheumy is not willing to put you on another med, you need to find another Rheumy. Perhaps he owns stock in Abbott.


Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,
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The body can very well get adjusted to medicine and start ignoring it. this happens with TNF's like any drug.

In terms of antibody reaction. From the studies i've read up to 30 percent of patients develop them. Being on methotrexate can help reduce that. Also stopping and starting the drug can casue it.

When i had my antibody reaction it made me feel like I had the flu and my pain was way worse. The immune system goes into overdrive to get rid of the medicine.

switching to another TNF inhibitor usually works well for most people.

Last edited by finnari; 08/23/11 12:44 AM.
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Thanks for all the input.

My rheumy just had me take the full panel of blood work to check ALL my levels. He said after he checks the results, he is okay with me going back on a TNF blocker. This time I am looking at Simponi.

My pain management specialist is having me try trigger point injections this next week since the pulsed RF procedure didn't work this time. I'm hoping this at least gives me a little relief until we are able to work out Simponi with my health insurance.

Thanks again!

-Anne

Joined: Feb 2006
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my son is an engineer on simponi. Loves the once a month dosing with his busy schedule and it does not usually mess up travel the way an enbrel might


No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes
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Came off Humira about 6-7 weeks back, it seemed to be loosing effectiveness and too many side effects.
Started Enbrel but it is not really working, quiet uncomfortable and really feel the pain towards the end of the week (of the injection).
Hope it starts working out for you soon.

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Sometimes they take a little time. I will be switching TNF's soon also. Humira was wonderful while it worked, but it's time to move on. I hope the Enbrel kicks in soon


Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,
Joined: Oct 2010
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I took humira, enbrel and simponi in an effort to get my flairs under control. Simponi worked the best but seemed to start losing its effectviness around weeks 2-3. Humira would only work maybe a week on my and enbrel was only a few days at a time. I am now being moved onto remicade in hopes it will do better.


HLAB27+ A.S for 2 year. Humira, Enbrel, Simponi all tried now moving on to Remicade. Meth, sulfa, tramadol, etc...
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