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Remission and Biologics #281670
10/08/18 01:08 PM
10/08/18 01:08 PM
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MichaelSean Online OP
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I ran across a post from a Rhuematoid Arthritis group on Facebook yesterday about remission. I know that's not AS or PsA like I have, but I think most people with AS have an underlying autoimmune cause. (Maybe I'm wrong about that ... I've not researched it thoroughly.)

But the RA article stated that if you've had no pain for many months, your condition MAY have gone into remission. And you should have a conversation with your rheumatologist about decreasing your dosage or stopping the medication altogether. Fortunately, I am one of those people for whom Humira has worked like gangbusters. Am I in "remission?" I don't know. But I've had no pain for 10 straight months. My rheumatologist IS recommending I move to an every three weeks versus an every two weeks injection schedule. Which is nice. But that's not my question.

I've heard both sides about stopping Humira. One that you CAN stop and restart it at a later date if your symptoms come back (my rhuemy tells me this). The other is that if I stop taking it, my body will build up antibodies to the mediation, and if I start taking it again later it will no longer be effective (my gastro tells me this.) I don't know what to believe.

Does anyone know the latest science regarding whether or not biologics can be halted in people who may have gone into remission and then resumed should the symptoms return?

Last edited by MichaelSean; 10/08/18 01:20 PM.
Re: Remission and Biologics [Re: MichaelSean] #281671
10/08/18 02:01 PM
10/08/18 02:01 PM
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seymour Online
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You’re taking this medication to stop hurting, and now that it works you want to stop it because you’re not hurting anymore? That’s the Humira doing its job buddy.

You should consider yourself lucky that the medication works that well and move on. No need taking the risk the sabotage that by stopping it. AS never goes away. What you have is clinical remission and if you stop your treatment you’ll be back in the land of pain maybe faster than you think.

I don’t want to sound harsh but I suggest you enjoy your treatment working so well and move on with your life. Enjoy the relief while it lasts and don’t do anything foolish.

Re: Remission and Biologics [Re: MichaelSean] #281672
10/08/18 02:05 PM
10/08/18 02:05 PM
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To my knowledge there is no definitive answer to your question about restarting Humira. That's why you are getting different answers from your doctors and from people on the forums. It's also very possible that the definitive answer is "it depends." Everyone is different and reacts to medications differently.

The thing you have to watch for with AS is that you can have periods of relative quiet, followed by periods of high disease activity. It's the nature of the disease that it ebbs and flows. You can seem to be in remission for a while, then a giant flare will come roaring in and knock you off your feet.

Have you watched the two videos by Zach Kornfeld from the Try Guys? In the first one he is very upbeat. He's feeling good, the Humira is kicking AS's tail, life is great. In the second one several months later, he says "it's getting worse". Symptoms have returned and he hurts. You can see it in his eyes even when he tries to be upbeat.

Am I correct that you've been on Humira less than a year? My uneducated guess is that if you stopped Humira completely, your symptoms would come back. I would call your state "medicated remission" meaning that your remission is dependent on continuing the medication. But I'm not a doctor, so you should discuss this question with your doctor.

I think the 3-week schedule is a good move. If pain starts to return, you can move back to the 2-week schedule. If you continue to be pain free, you and your rheumy can discuss what your next step should be.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Remission and Biologics [Re: seymour] #281673
10/08/18 02:44 PM
10/08/18 02:44 PM
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MichaelSean Online OP
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Originally Posted by seymour
You’re taking this medication to stop hurting, and now that it works you want to stop it because you’re not hurting anymore? That’s the Humira doing its job buddy.

You should consider yourself lucky that the medication works that well and move on. No need taking the risk the sabotage that by stopping it. AS never goes away. What you have is clinical remission and if you stop your treatment you’ll be back in the land of pain maybe faster than you think.

I don’t want to sound harsh but I suggest you enjoy your treatment working so well and move on with your life. Enjoy the relief while it lasts and don’t do anything foolish.


I don't mean to come across as ungrateful that the Humrira is working. But it's not come without a cost. I've been sick for what feels like ... well, most of the summer. First with a stomach issue. And lately with a sinus issue. Fortunately, I seem to be past both now, having FINALLY licked the sinus problem this week with daily sinus rinses and Allerga D. But pre Humira I almost never got sick. So this has been unusual for me. And I'll admit to being curious about whether or not I could have my cake and eat it, too. Could I go off the Humira AND have my pain not return? My mother, who has RA, did. She was on Remecaid for a while but stopped taking it because she kept getting UTIs. She had many years before her RA symptoms returned.

For now, however, I plan to stick with the tri weekly injection schedule and see how that goes. So far it's been going well.

Last edited by MichaelSean; 10/08/18 03:25 PM.
Re: Remission and Biologics [Re: MichaelSean] #281674
10/08/18 04:46 PM
10/08/18 04:46 PM
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seymour Online
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I understand that having more illnesses can be annoying.

The thing is, you could stop Humira, be painless for a few months, and then see your pain come back with a vengeance and Humira not working again.

Unless you're getting really sick all the time, I suggest you try the tri-weekly injections and leave it at that. Or maybe switch to Enbrel?

Re: Remission and Biologics [Re: MichaelSean] #281681
10/09/18 09:13 AM
10/09/18 09:13 AM
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Michaelsean, I would agree with Seymour Moss, extending out to 3 weeks certainly seems sensible then observing and responding to your symptoms. Hopefully you'll find that you can go another year without pain and then be discussing 4 weekly injections etc. I assume you have other biologic options beyond humira anyway that you may have not used?

Re: Remission and Biologics [Re: MichaelSean] #281683
10/09/18 12:48 PM
10/09/18 12:48 PM
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seymour Online
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Seymour Moss? 😛

Re: Remission and Biologics [Re: pdiddy] #281684
10/09/18 12:52 PM
10/09/18 12:52 PM
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MichaelSean Online OP
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Originally Posted by pdiddy
Michaelsean, I would agree with Seymour Moss, extending out to 3 weeks certainly seems sensible then observing and responding to your symptoms. Hopefully you'll find that you can go another year without pain and then be discussing 4 weekly injections etc. I assume you have other biologic options beyond humira anyway that you may have not used?


I do, yes. Humira was actually the first one I tried. My rhuematologist prescribed it because according to her it's the optimal biologic for people with AS.

Re: Remission and Biologics [Re: seymour] #281686
10/09/18 02:42 PM
10/09/18 02:42 PM
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SouthernMoss Offline
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Originally Posted by seymour
Seymour Moss? 😛


Uh oh, Seymour, our secret is out. Yes everyone, Seymour is my long lost son! 😛


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Remission and Biologics [Re: MichaelSean] #281690
10/09/18 05:41 PM
10/09/18 05:41 PM
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seymour Online
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I could be though, my mother is your age! smile

And come to think of it, you seem to have similar personalities...

...

... Mom? laugh

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