Is Anyone Having Success With Biologics?

By falani

1 min read

I have had back pain since I was 16 years old. When in my early twenties I went to Orthopedic MD who took an xray on my upper back and determined that I probably injured my back at some point because he detected a calcium deposit and fracture in the lower cervical area of my spine. They also noted an abnormal curvature of the spine (dextroscololis).

He recommended sleeping on a piece of plywood under my mattress for firmness. Fast forward 50 years and I continued to have greater back pain in both upper and lower back some so severe that I couldn't even get out of bed without rolling out on the floor and pushing myself up with my arms and support from holding on the mattress.

More than AS

Sitting and walking became more difficult over the years, then standing and kneeling. I was diagnosed with diverticulosis in 2010. I had diverticulitis flares on several occasions and two required I be hospitalized for 4 days for recovery.

I had prostate cancer surgery in 2019 and now just diagnosed with bladder cancer with surgery in 2 weeks.

Pain on a 24 hour basis

Most every joint and muscle are in pain from my head to my toe on a 24/7 basis. Diagnosed with AS and fibromyalgia in 2019 and prescribed Cimzia. I've seen no improvement since placed on Cimzia. In fact, now I'm experiencing more stomach pain than before starting Cimzia. Also, I have experienced eye pain and jaw pain. Can only take Tylenol and Tramadol for pain as NSAIDS causes diverticulitis flares.

Does anyone out there have any success stories with other meds or biologics for AS pain? Your recommendations would be greatly appreciated.

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FloridaArnie Member
I am basically pain free. REMICADE every 4 weeks <inline-mention username="ashrut" user-id="2379424"/> 5 mg/ kilo of weight, plus one daily Imuran, plus weekly self- injections of methotrexate. In addition I go to my rheumatologist every 10 weeks and he gives me two shots (left and right) near SI joints. I started the journey 9.5 years ago and we slowly added all the pieces of this program. I have been pain free for quite a few years...5 years or more. And CRP and SED rate normal for more than a year. 
1. Rebecca C Moderator & Contributor
 <inline-mention username="FloridaArnie" user-id="2106860"/> - we do appreciate you sharing your experience with us. Your combination of REMICADE, Ashrut, Imuran, and methotrexate, along with the additional injections near the SI joints, appears to be providing fantastic results. It's also reassuring that your CRP and SED rates have been normal for an extended period. It's quite a testament to the importance of personalized care and a gradual, tailored approach to finding what works best for you. Wishing you continued health and wellness throughout the upcoming year. Thoughtfully, Rebecca (community moderator)
johnhall Member
Hello, first I am very sorry for all of your pain, trials and tribulations. I am a fulltime firefighter and have found some relief when my rheumatologist prescribed me Cosentyx. I have tried Humira (with no luck except a very painful injection). I take the Cosentyx auto-injector pen every 2 weeks and it does provide me with some relief, even if it is only for a few days. I can't seem to shake the pain in the small of my back and neck, even with Cosentyx. I hope you are able to find some relief and I wish you the very best !!!
ashrut Member
Hi... I read your story.. i would like to ask you have u ever tried Sulfasalazine as medication. I am using this from past few years and i am satisfied with it. Also you can try hot water bag for pain control and muscles relaxation. Also try alternative medical therapy too like homeopathy and Ayurvedic... U will see difference.. Thanks ..
1. falani Member
 Ashrut, Thanks for your response. I will try the Sulfasalazine and Ayurvedica. Can no longer take biologists because of cancer diagnosis. I use a CBD 1000mg. Salve on my back, hips, legs and knees. It helps me sleep most the night without too much pain.
rhonda-johnston Member
Hi there, I just started Biologics in May of this year. The biggest thing I’ve noticed so far is that it greatly, and I cannot stress enough greatly, reduced the fatigue I have been experiencing. I was in bed for the most part the last two years. As for pain reduction, I don’t see so much of that. Also, I’ve noticed that this fatigue is starting to creep back in. My doctor is aware of this, and is asking me to wait until December to reevaluate giving it more time to work. I really hope that you find some help and relief soon.
Diana Castaldini Contributor
<inline-mention user-id="2397777" username="falani"/> First, I want to thank you for sharing your story with us and let you know that you are not alone by any means. So many of our community members relate to having back pain early in life and waiting years, even decades, for a proper diagnosis. Here is one story you might relate to: <a href='https://ankylosingspondylitis.net/living/decades-diagnosis-part-1/?via=recommend-reading&r=' target='_blank' rel='noopener noreferrer ugc'>https://ankylosingspondylitis.net/living/decades-diagnosis-part-1/?via=recommend-reading&r=</a>. Furthermore, most of us can relate to being in pain all day, every day, and while none of us should have to live this way, there are many strategies, resources, and ideas for relief and coping available on this site. So we are so glad you are here. Secondly, yes, many people do have success with biologics and other meds! It is often a lot of trial and error, and if one biologic doesn't work for you, another in the same class can actually work well. The medical community doesn't fully understand why, but responding unfavorably to one TNF blocker doesn't mean you won't respond well to another. I can tell you my experience with biologics and then share some others from our community. I was diagnosed with AS in 2014 and within 3 months, I started Humira. Humira began working for me immediately, almost overnight, and within 4 weeks, I went from barely able to walk to running. It was kind of miraculous for me. After about 9 months, the medication stopped working as well and I started having flares again, then developed some recurring infections, so it was enough for my doctor and I to decide to try other meds. Since then, I've tried Enbrel, Cosentyx, and Cimzia, the first two not providing much or any benefit, and Cimzia providing enough that I can move better, but nowhere near as much benefit as I had from Humira. However, I am pretty happy with it because my pain is reduced by about half. One of our writers, Cassia, shares her experience about Humira here and how it is working pretty well for her: <a href='https://ankylosingspondylitis.net/living/humira-experience/' target='_blank' rel='noopener noreferrer ugc'>https://ankylosingspondylitis.net/living/humira-experience/</a> Another of our writers, Steff, writes about how her biologic stopped working so she worked up the courage to advocate for herself and request to try another biologic: <a href='https://ankylosingspondylitis.net/living/advocate/' target='_blank' rel='noopener noreferrer ugc'>https://ankylosingspondylitis.net/living/advocate/</a> If you haven't already, it would be a good idea to discuss with your doctor whether trying a different biologic is pertinent. Usually rheumatologists want to give a biologic trial about 3-6 months, and if you're not having a favorable response in that time frame, they will oftentimes prescribe another. There are about 6 or so biologics approved to treat AS, so rest assured that you still have several to choose from. Here is some more info about the available meds for AS: <a href='https://ankylosingspondylitis.net/medications-overview/' target='_blank' rel='noopener noreferrer ugc'>https://ankylosingspondylitis.net/medications-overview/</a> We wish you so much luck and we want to know how things progress. Will you come back and update us? -Diana (Team Member)

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