Looking for new cure

By ebarbar

1 min read

I have had AxSpA for about 24 years. I am 73 and yes I have tried everything from stem cell therapy, opioids, exercise and physical therapy, stretches, spinal stimulator, massages, and dozens of topical ointments. I know I have to live with this the rest of my life, but in spite of doing all the things the health books tell me to do, it is so depressing.

I also have scoliosis, degenerative disc disease, partial paralysis, peripheral neuropathy, fibromyalgia, and tremendous fatigue. I am looking for a real game changer but all I read is a lot of maybe try this. I want solid answers on what else I can do other than change my diet and reduce sugar and carbs. I have done all this, but sometimes I fall off the wagon. When I do, then I pay the price of a lot more pain. I am all out of new ideas....please help
-Ernie

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ebarbar Member
Matthew, yes I'm on a biologic, Simponi for about six months, but no noticeable improvement. I meant to mention that before but forgot. What I don't understand is after all the MRI's and other xray's etc, they don't show inflamation. I just had a MRI of the right hip and it showed no inflamation. My right SI joint is screaming with pain today and I guess it's inflamation. I have cut way back on sugar and carbs, but have a small amount now and then. The books I read talk about klebs attacking the gut bacteria. Well, that happens when you start consuming sugar and carbs. I drink no soda and only sugarless ice tea. Only decaf coffee now and then, not every day. I eat primarily fish and chicken, very little beef. For snacks I try to stay on walnuts and almonds and once and awhile a wafer snack with peanut butter. I think spondylitis is like taking the Genie out of the bottle. Once it's out, you can never put her back in the bottle. I know it takes a lot of money for research, but I'm sure it won't happen in my life time. 
1. Julie Vallortigara Moderator & Contributor
 <inline-mention username="ebarbar" user-id="2107462"/> Hi Ernie, thank you for sharing all this. I would have suggested that same thing as Matt said, to try one of the biologic medications. It has worked like a miracle for me for the past 6 years! So you say that you have been on Simponi now for around 6 months. How often do you inject? Are you due to see your doctor soon for a review of this medication? Maybe it needs a bit more time to be efficient. I am on a different one so I can't comment. However there are different types of biologics so if you happen to have no benefits with Simponi, then you have others to try. Now in terms of your MRI being negative for inflammation, well if you are taking a biologic medication, it's expected that you would not show any inflammation in your joints as a result of this treatment, which prevents the inflammation response in your body. Now it doesn't mean that you are not in pain! I know because I have been there before... you can have other type of pains like mechanical pain. I used to have pain in my hip, and we did an MRI which was clear. The explanation for me was mechanical pain which can be eased with mobilizing the joint. Your diet sounds fab with good habits to limit the inflammation. Just keep faith in the biologics and all the other things you are doing to self care, eat well and get better. You will find the approaches that work for you! Take care, Julie (team member).
2. jleighshank Member
 <inline-mention username="Julie Vallortigara" user-id="2107984"/> Julie, I am new to your organization so I am reaching out to get a bit more info from you. I agree with what you & Matt have said. What we all have to do is to keep looking, keep fighting, keep reaching out. However, after battling arthritis since childhood, the one thing I can say about my journey is that I use every resource at my disposal to control the disease. I would like to believe that I just haven't tried the right agent to control the disease, but I believe that this is a very multifaceted illness in which I won't find a single answer. As I said, it might be just how it has occurred throughout my body, but I have not come across 'the answer' & continue to believe that ,yes, there are other modalities or medicines to be explored, but I will always deal with an arsenal of methods. Thank you for your moderating & as I said, your response was appreciated, judy
matthew-ferry Community Admin
Hi Ernie, thank you for sharing your story with us. I'm sorry you're still experiencing such difficult pain and fatigue from AxSpA, it sounds like you have really tried many strategies to feel better. Are you currently seeing a rheumatologist or another specialist?Some patients do have success and feel better using a <a href="/treatment/biologics-biosimilars">biologic medication</a>, such as Humira, Cimzia, and Cosentyx. Have you ever tried a biologic medicine? It is important to share that finding the right biologic may take some time. Our advocate Rebecca shares in this article her <a href="https://axialspondyloarthritis.net/living/gradual-biologic-journey">side effects from one biologic</a> and need to switch to another formation.I'm interested in seeing what our patient advocates may suggest too. Please know we're here with you for support.-Matt (Team Member)