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Cured after 10+ years of use of Enbrel?
#284369 07/23/20 06:23 PM
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Does anyone know any case where the patients no longer needed to use Enbrel after certain number of years, say 15 years? My child is 26 now and regular dosage is once per week but if one stop using the Enbrel for more than a month there was no symptom either. So I am wondering whether there were patients out there showing no symptom if they stop using Enbrel and any other treatments completely for more than 2 months or longer? Thanks. -Lu

Re: Cured after 10+ years of use of Enbrel?
luchen261 #284370 07/23/20 09:53 PM
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such a good question. I bet there are studies on this, but I'm drawing a blank to think of one.

I used to hear people talk about the disease 'burning out' later in life. I don't think that has been substantiated.

Seems like a lot of people that I talk to have spaced out their medication. sometimes to take a vaccine, because they are having some non AS procedure, it could be because of traveling, or even forced on them because of a change in insurance coverage, etc. Some people really notice a difference in pain levels when not taking the medication.

I used to hear people talk about the disease 'burning out' later in life. I don't think that has been substantiated. A lot of people talk about flares. sometimes the disease seems very active/painful while other times it's more tame. sometimes it's hard to find a reason for the change. it could have to do with the inflammation & healing (fusing) nature of the disease, where the inflammation erodes bone/joint that is then fused.

I certainly notice that some days, weeks, years and decades are much better than others. Even without changes in treatments.

I like to discuss with my doctor ways to measure whether my treatment plan is helping or not. for example, i'm one of the people that CRP & ECR was always high from AS. so, i would think that if my treatments are going well, those would be lower. There are range of motion measures, and things like BASDAI and BASFI. of course MRI and one day low dose imaging can be used.

Hope that helps.


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Cured after 10+ years of use of Enbrel?
RAHMBA #284371 07/25/20 06:29 AM
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Thank you Rahmba for your info!

Re: Cured after 10+ years of use of Enbrel?
luchen261 #284373 07/25/20 11:18 PM
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Hello, Enbrel was my first biologic. I started it in 2009 at 19. I stopped it 10 years later. The pain came back with a BANG, exactly 3 weeks after my last shot. I'm having a similar experience with Infliximab. Eight weeks after my last Infliximab infusion, I had a small amount of pain, which gradually got a little worse every week, until week 13, where I'm now in a full blown flare. Very difficult and painful to move. I had warning this time though. Anything is possible I guess. No way to predict.


Female, 30 yrs. Diagnosed with AS in 2008 - symptoms since 2007. Psoriasis & PPP since 2018 ∴ PsA ¯\_(ツ)_/¯
Re: Cured after 10+ years of use of Enbrel?
luchen261 #284374 07/26/20 02:53 PM
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Although I, too, have heard anecdotes about people going into complete remission after biologic therapy for a period of time, Enbrel is not a cure for AS. So I think your son should adjust his expectations accordingly. My rheumatologist told me I could expect to be on some sort of treatment -- Enbrel, presently -- for the rest of my life. I think a more reasonable expectation is that the available medical treatments expand, improve, and become less expensive over time.

Re: Cured after 10+ years of use of Enbrel?
luchen261 #284376 07/27/20 03:50 PM
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Your son might be able to space out the treatments significantly if he is pain free between injections. I would expect that the pain eventually comes back if he completely discontinues. In my case I have a complete remission with biologics, but if I discontinue treatment, the pain and other symptoms like crepitus and GI difficulties come back after a few months. The benefit is that I can use much less medication, which I pay for out of pocket. I am fine with getting a Simponi infusion every 3 months, instead of 2. But 4 months is pushing it - the last 2 weeks are rough.

Re: Cured after 10+ years of use of Enbrel?
Jalf #284379 07/27/20 10:42 PM
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Originally Posted by Jalf
Hello, Enbrel was my first biologic. I started it in 2009 at 19. I stopped it 10 years later. The pain came back with a BANG, exactly 3 weeks after my last shot. I'm having a similar experience with Infliximab. Eight weeks after my last Infliximab infusion, I had a small amount of pain, which gradually got a little worse every week, until week 13, where I'm now in a full blown flare. Very difficult and painful to move. I had warning this time though. Anything is possible I guess. No way to predict.


Sorry to hear your situation. Maybe if you had not stopped Enbrel you would stay at good status at that time. My son had AS since 2004 when he was 10 and at one point he was able to stop using Enbrel for 2 months without any pain. The main reason we stopped it was because he showed fatigue during the day. Since then we were scared to stop taking Enbrel unless I heard solid cases where the AS burnt out. The MRI is expensive therefore the insurance is unlikely to approve it just for measuring the damage level when Enbrel is stopped. Thanks for your feedback though!



Last edited by luchen261; 07/27/20 10:49 PM.
Re: Cured after 10+ years of use of Enbrel?
aks #284380 07/27/20 11:02 PM
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Originally Posted by aks
Your son might be able to space out the treatments significantly if he is pain free between injections. I would expect that the pain eventually comes back if he completely discontinues. In my case I have a complete remission with biologics, but if I discontinue treatment, the pain and other symptoms like crepitus and GI difficulties come back after a few months. The benefit is that I can use much less medication, which I pay for out of pocket. I am fine with getting a Simponi infusion every 3 months, instead of 2. But 4 months is pushing it - the last 2 weeks are rough.


Looks like my son's situation is similar to yours: after stopping Enbrel treatment for 2 months the pain came back. Glad you were able to space out the treatment significantly. I think with all the feedback he should stay with his current treatment since the insurance will cover almost all the cost. Thanks for letting us know your experience which guides us on what he needs to do next on the treatment plan!

Re: Cured after 10+ years of use of Enbrel?
Jalf #284387 08/01/20 08:10 PM
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Originally Posted by Jalf
Hello, Enbrel was my first biologic. I started it in 2009 at 19. I stopped it 10 years later. The pain came back with a BANG, exactly 3 weeks after my last shot. I'm having a similar experience with Infliximab. Eight weeks after my last Infliximab infusion, I had a small amount of pain, which gradually got a little worse every week, until week 13, where I'm now in a full blown flare. Very difficult and painful to move. I had warning this time though. Anything is possible I guess. No way to predict.


Why did you stop Enbrel if i may ask?

Re: Cured after 10+ years of use of Enbrel?
seymour #284394 08/05/20 02:16 PM
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The only side effect is it has caused fatigue and my son had to take a nap daily in the afternoon, which is difficult to do when he works in office when people start to go back to office in next few months. Thank you very much for sharing your experience!


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