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Anybody been on their biologic for 10+ years?
#284388 08/01/20 08:24 PM
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seymour Offline OP
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My rheumy mentioned she had patients that have been on Enbrel since it came out in 2002 and still have good results. It seems pretty rare for biologics to work for more than a decade and as I'm approaching ten years on Enbrel in two years I was wondering if any of you guys and girls have ever been on a biologic for a long time?

Thanks!

Re: Anybody been on their biologic for 10+ years?
seymour #284389 08/02/20 03:26 AM
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No I am still in the very early stages, just completed 1 year of Humira. Although I am still feeling gradual improvements in my symptoms (pain, range of motion).

I am curious though to hear from patients that have been on biologics for a long time!
Do you feel continuous improvements or did it stop after some time?


Background: 32 yr old male
Symptoms: Ps (scalp, elbows, knees) since 2000; PsSpa (neck, sacroiliac joint) since 2015
Dx: Osteoarthritis Aug, 2017; PsSpa Nov, 2018
Treatment: Meloxicam, Nov 2018-Jan 2019; Naproxen, Jan 2019-Jun 2019; Humira, Jun 2019-Present
Re: Anybody been on their biologic for 10+ years?
seymour #284390 08/02/20 06:40 PM
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So I need to look at my signature line to remember how long I've been on the meds. Enbrel only worked for me for a couple years but I'm sure I've been on Humira more than 10. Still working, sed rate still good. I worry about it now and then but try not to focus on it.

I mentioned how I see some people are on methotrexate because they build antibodies to the biologics and he said that the research isn't solid; some people don't build antibodies and it still stops working and some people with antibodies continue to have success with the biologics. I know there is ongoing research but for now, I just try not to worry about it too much

Edit, saw my signature line and almost 12 years on Humira

Last edited by Mary Beth; 08/02/20 06:40 PM.

46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Anybody been on their biologic for 10+ years?
seymour #284391 08/03/20 04:25 PM
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I began Remicade in 2002. I have not had any problems and the medication still works well reducing my "stiffness" and pain by about 80%. Some treatments are more effective than others.


Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Anybody been on their biologic for 10+ years?
seymour #284433 09/18/20 07:31 AM
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I began Remicade in 2001 about the same time as WhiteCell It worked so well I got off total disability and went back to work for 12 more years before I got taken out by increasing neurological problems with my spine. Remicade stopped my fusion, so part of my neck didn't fuse, and over time the joints grew large and compressed my spinal cord, resulting in spinal cord damage that led by my second and permanent disability. But no reactions or problems in over 100 infusions. to date.

Last edited by Jeffn; 09/18/20 07:31 AM.

Dx w/ AS in 1985. HLA-B27+. Left total hip replacement in 1998, lost 2" of height due to osteoporosis. Relevant meds include Remicade, Oxycontin, Percocet, Lyrica, Soma.7 hour spine fusion surgery for cervical spondylotic myelopathy and radiculopathy but have residual myelopathy. I have generalized osteoarthritis and have worn out hips, knees, big toes, and some fingers are fused or growing bones. Disabled since 2015. Chronic pain patient on a high dose of opioids. Live in zero gravity chair.
Re: Anybody been on their biologic for 10+ years?
seymour #284435 09/19/20 03:19 PM
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After 5 years of Simponi it seems to be losing it's magic.

I spoke to the Humira people and they pretty much told me to pound sand when I asked what would happen if I lost my coverage.

Re: Anybody been on their biologic for 10+ years?
seymour #284453 09/25/20 09:08 AM
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I switch every few years to a different one. Longest I stayed on one was Humara for 5 years. Now on Cosentyx and love it. Hope it lases.

Re: Anybody been on their biologic for 10+ years?
seymour #284460 09/26/20 07:06 PM
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I was just at the rhematologist and my SED rate before I started Remicade in 2001 was 80-100 and now is still 15 which is normal, so it continues to work just like the first year I took it, now 19 years later! I guess all biologics are different and all our bodies are different.


Dx w/ AS in 1985. HLA-B27+. Left total hip replacement in 1998, lost 2" of height due to osteoporosis. Relevant meds include Remicade, Oxycontin, Percocet, Lyrica, Soma.7 hour spine fusion surgery for cervical spondylotic myelopathy and radiculopathy but have residual myelopathy. I have generalized osteoarthritis and have worn out hips, knees, big toes, and some fingers are fused or growing bones. Disabled since 2015. Chronic pain patient on a high dose of opioids. Live in zero gravity chair.

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