My Biologic Stopped Working For Me

By Steff Di Pardo

Last Updated:

2 min read

I was on Remicade for a total of 2 years. At first, it helped me tremendously. Now it’s stopped helping me altogether.

The beginning of my treatment process was amazing. I felt energized and my pain was controlled the best that it could be. I was able to do back to back 30-day yoga challenges and go out with friends, too.

With Remicade, you do an infusion at weeks 0, 2, and 4. Then it’s every 8 weeks thereafter. I lasted on every 8 weeks until the spring of 2019, about a year into my treatment.

My first year on Remicade was definitely my best year. I was able to feel like more of a human again and get back to the activities that I loved doing.

I moved to every 6 weeks Like I said, about a year into my treatment I switched from every 8 weeks to every 6 weeks. My pain and fatigue were creeping back in and I wasn’t able to do yoga every single day as I was before.

The infusions every 6 weeks lasted about 6 months, until September of 2019. That’s when things got a little worse.
I started getting infusions every 4 weeks In September my doctor decided to move me to every 4 weeks for an infusion. Partially because of my pain, and partially because I had stomach issues going on.

We agreed to have them once a month in case it was Crohn’s. It wasn’t, but my pain got worse and worse as the months went on.

Six months later and the infusions help for maybe a week and a half, tops 2. My pain is reminiscent of how it was when I first noticed symptoms of AS, and my fatigue is some days debilitating.
Addressing how my biologic stopped working At my last infusion, I talked to my rheumatologist about what we can do. He ordered me an MRI and told me that we will need to see inflammation in my scan in order to switch to another drug. I’m allergic to NSAIDs so they’re out of the question.

I had my MRI 2 weeks ago, and I haven’t gotten a call back about my results which worries me. My rheumatologist stated that he wasn’t sure what to do if no inflammation came back on my scan, so I’m currently both frustrated and worried. If there’s no inflammation, why am I in so much pain? Why am I so fatigued?
What’s next? I’m not entirely sure about what’s going to happen next, to be honest. I know that not every drug will work for everyone, but when my rheumatologist said he wouldn’t be sure of what to do, I got worried.

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I’m still worried, especially since I haven’t heard anything back from my scan. It’s always in the back of my head that I’m just going to be stuck in pain and fatigued like this forever. I think that’s a worry we all have.

I see my rheumatologist again in 3 weeks, so I’m hoping to get some answers then. What biologic drugs have you been on, and did they work for you?

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Wpayne Member

I think sometimes my AS is hard for my doctors because this is also the autoimmune disease not everything is in the x-Ray and sometimes it’s not inflammation but the disease. This is a problem for people with AS. 
1. Doreen H Community Admin
 
 <inline-mention username="Wpayne" user-id="8896986"/>, Many in this community can relate to living with an "invisible" illness. You may find this article helpful: <a href='https://axialspondyloarthritis.net/living/living-with-an-invisible-illness' target='_blank'>https://axialspondyloarthritis.net/living/living-with-an-invisible-illness</a> My best, Doreen (Team Member)
Gems Member

I’ve been on humira for about seven months now. It has cleared my psoriasis up immensely but the pain and fatigue is still present. I felt like my rheumatologist didn’t believe me, but he sent me for another mri to check for disease progression, and also asked me to think about if I would like clear skin or less pain. That’s a no brainer for me - less pain, surely? I’m currently waiting to see the rheumatology nurses in clinic but I’m not sure they can change the biologic. So I’m not too sure what that appointment is for, the results maybe? I also feel like you - what if nothing shows on the scan, where do I go from here 🤷‍♀️😥
1. Doreen H Community Admin
 
 Hi <inline-mention username="Gems" user-id="8640484"/>, We're glad you found this community and appreciate you joining the conversation. We're hoping your upcoming appointment will provide some answers. Please keep us updated. We'll be keeping you in our thoughts. ~Doreen (Team Member)
Geezer Member

I have no background in medicine. I started on Humira, after a year it was time for a new med (Enbrel). My immune system works overtime creating antibodies to these biologics. I am currently on #7. It's not the same for everyone. Rheumatologists will be somewhat reluctant to start you on new meds as there are only so many approved for Ankylosing Spondylitis. This isn't much help. Best wishes. Geezer 
1. Doreen H Community Admin
 
 <inline-mention username="Geezer" user-id="8422521"/> We appreciate you sharing your experience. I hope number seven makes a difference for you. Please keep us updated. We'll be interested to hear how things are going. ~Doreen (Team Member)
CommunityMemberb81473 Member

I have to say that the reason the Dr has to do an MRI is for the insurance company. Your insurance dictates how well you're taken care of PERIOD. Also remember if you're on Medicare your Supplemental Insurance is very important. #1 supplemental BC/BS. You pay a high premium so you get premium care. Sad situation but true. No one will admit this but I retired from Nursing & yes it's very true.
CommunityMemberb81473 Member

This is exactly what I wanted to talk about. My Rheumatologist wants to put me on Humira. I read the precautions & I'm wondering if it's worth it. It reduces your ability to fight infections & I'm diabetic. I get every germ that comes near me & I'm in bed. I really don't know what to do. I'm constantly in pain from Psoriatic arthritis. I can hardly walk. My mom had AS & she ended up in a wheelchair. I live alone & have a helper come in 10 hours a week. I'd love to hear from ANYONE who understands where I'm coming from. Thanks for listening.
1. Nicky Flikas Member
 
 <inline-mention username="CommunityMemberb81473" user-id="6772131"/> We are always here to listen and for support. I am sorry to hear you are struggling with this disease and in pain. I can understand the fears you are having with starting a biologic. I would talk to your rheumy about everything you are feeling. I think how you are feeling you are not alone on this. I felt like this starting a biologic. But I wouldn't change it as it's helped me so much. I hope the same for you as well. I am sending you hugs and sending you all the positive vibes your way, Nicky (Team Member)
Jlplea76 Member

Im so sorry to hear this and I can feel your frustration. Ive been on Rinvoq (worked the best but concerns over long term side effects); Humira (didnt work); Xeljanz (didnt work) and now on Taltz last 10 weeks. This obviously isnt working either - having huge stomach issues (cant take NSAIDs anymore either), foot pain and extreme fatigue. I also have been questioning if I will be ever be able to go for a nice pain free walk or have energy ever again - or is this a state I will have to come to terms with in terms of my future. Im stuck in sneakers but even in the most supportive shoes I limp home with some sort of pain. I have lost complete trust in body - where I once lived for walking and being active. Im not sure why another MRI is needed either - but keep us updated and hopefully your rheumatologist gets in touch soon (I get my GP ccéd into my imaging / tests and she gives me the results when I dont hear from my Rheum). But understand what next really relies on your Rheumatologist. 
1. Rebecca C Member
 
 Terribly sorry to hear, <inline-mention username="Jlplea76" user-id="6122296"/> that you are still not finding relief with the few biologics you've tried. Some individuals may achieve better symptom control through various treatments, lifestyle changes, and coping strategies. And, it's completely understandable to have these questions and concerns about your future while living with spondyloarthritis. Chronic conditions like this can significantly impact your daily life and make you question your ability to enjoy certain activities or regain your energy. It's okay to have moments of uncertainty or worry, but also give yourself room for hope and resilience. Sending mending thoughts of relief and healing. Rebecca (community moderator)
CommunityMemberf6aa77 Member

I have been on xeljanz for about 4 years I think. I was first given Embrel(allergic) then Humira. My RA dr. wanted to start a biologic early but I didn't have most of the common symptoms that I read about. I have horrible pain in my feet and it may or may not be part of the AS. I started having more symptoms this spring and it was decided to stop the Xeljanz in June to see if it was even helping. Within a few days I had the lower back pain I have never had. Restarted the Xeljanz because I was so uncomfortable per Drs orders and am now taking PT. I'm not any better really and am more convinced than ever that I need to change treatments. I feel for you and know that feeling after your early treatments. I was getting cortisone shots in my feet every 4 months with great comfort but that began to happen more frequently and now I only get a month or less of relief. Prayers for you and hope to hear your doctor has a plan for you at the next visit. If not, it may be time to start fresh with a new dr. I'm in the same pattern right now. Good Luck
1. Rebecca C Member
 
 <inline-mention username="CommunityMemberf6aa77" user-id="8514507"/> - feeling that your spondyloarthritis treatment is no longer as effective as it once was can be a frustrating and concerning experience. If your current treatment has become less effective, your doctor may consider other medications, therapies, or a combination of treatments to better manage your symptoms. There may be newer medications or treatment options that could be beneficial for you. Hoping you find the relief you need - warmly Rebecca (community moderator)
GeekGal52 Member

So I have been on at least 4 biologics and they stop working after a year or two. I’m not sure why your Dr wants mri proof, you know what you feel. There is nothing that says you need evidence and with nonradiographic axial spondylitis there is not much to show. I get mild swelling in my finger joints and pain in my SI and I feel retched…I’m sorry your going through this but my rheumatologist says it’s the nature of the beast, they just seem to stop working. I’ve read there is an issue with the body making neutralizing antibodies to the biologic, I’ve asked about testing and there seems not to any that I’m offered. 
1. GeekGal52 Member
 
 Yes I have been on 4 injectable biologics, the process of choosing a target biologic is so random, no testing, just here try this. We need better treatment protocols so patients know what to expect.
2. Nicky Flikas Member
 
 <inline-mention username="GeekGal52" user-id="4313773"/> I know. I would agree on this hopefully in the near future they will have more research and studies to help us know what better treatment will be for each one to help our condition. It's unfortunately all about error and trial that so many of us hate going through. Have you been able to find a treatment that is helping ? Hugs, Nicky (Team Member)
breeana Member

Humira, cosentyx, remicade: all failed. I am now on xaljanz, it is a jax inhibitor works differently. You telling your doctor that your medication has failed, and you no longer have a quality of life like before, should be enough to switch. I am on xeljanz, methotrexate, mobic, and muscle relaxers to help with the spasms. It keeps me upright and I still flare for whatever reason. I go into such a flare that I can’t walk. My allopathic dr said to also see a naturopathic doctor for best results. The level of disability that I have, I can’t afford to see a doctor out of pocket. Best of luck to you!
grammav63 Member

I am on Humira and it has been working wonders for years. I am grateful for the quality of life it has given me for the last decade.
Lawrence Rick Phillips Member

Steff: the good news is that there are plenty of choices. Since I was first Dx'd with RA, i have had many opportunists to change biologic medications. Some worked out, and most did not. Like you I started with Remiciade. It was amazing and when I got to the 4 week cycle it help for some time. I used to sing after infusions, i am free, i am free. But then like you it stopped working. Like one day it worked and the next day it did not. Then I ripped through several in the next 8 years. I tired most of them. Orencia, Actemra, Simponi, Cimzia, and today a medication not used for AS Rituxan. Each are great and and not all that long lasting. There are plenty of options. I suspect you will find a good second choice. However I did find one thing. My second and on, never gave me that lets go singing feeling. I really like Rituxan which I have been using for 7 years now. but singing? Not so much !! rick - moderator
Lisa Marie Basile Member

Steff, I'm so sorry that you had all that goodness taken from you when Remicade stopped working. And I also really understand about the inflammation. I think it's wild when levels come back low and pain is so high. It leads me to think AXSPA/AS is a really misunderstood/weird/complex disease. I was on Humira for a few months. Sadly, I got shingles and a lung infection and went off of it. I'm managing now with a good diet/lots and lots and lots of movement (even when I don't want to), NSAIDS like diclofenac and stress management. CBD is a god-send as well for pain and my anxiety. Don't know what the future brings. I hope that you find relief/mobility/joy again. So glad to see you're sharing your experience.