Was Recently Told I Don’t Have AS After Being Treated For 3 Years With IV Infusion And Methotrexate
A new Rheumatologist thinks I don’t have AS because these drugs don’t seem to be helping. Has anyone else had this happen to them?
Humira completely halted my eye problems for the last 7 years and counting.
My neck has not progressed any also
I hope you can get it. From my research at National Institute of Health.gov, Medicare, and talking to other doctors, its a quite specialized test, not done as part of standard Rheumatological workup. It needs a special centrifuge and I'm under the impression that machinery isn't widely available. Also, the blood draw must be tested within 24 hours. There are some labs online that offer a comprehensive cytokine test and it is quite expensive, might not be covered by insurance. One of my drs told me that I will likely need to go to a medical and/or research university about 4-5 hours from where I live to get it done. I haven't seen my Rheumi yet to ask for it, that is next month. However, after having been experimented on with 5 biologics all to no avail for my joints and causing more harm than good, I plan to get this test before I play around anymore with biologics. Honestly, so far the best health and symptom help I've gotten is strict adherence to FODMAP diet and supplements that research has shown to do what bios do without compromise to the immune system. I, personally, think treatments with bios are insurance and pharmaceutical company driven and that Rheumis use them because most patients want the HOPE they provide without having to do anything else more challenging, such as lifestyle changes that can be exhausting and dietary limiting. Most people don't want to do that part. Maybe someday there will be an easier way, such as a monthly or quarterly injection. But the fact that most patients aren't getting much relief and many Rheumis are getting frustrated to the point of rudeness proves that bios aren't the way. Good luck!😌🙏
Thanks Mimi, because of my past experiences, I dont worry until I'm lying in a bed with more than one dr looking down at me telling me that it's time to worry. Life is too short and days of mobility even shorter to let a callback get to me. And if it does, I may just need to go to a jewelry store for more pink bling!
💖 uh oh...I feel a worry monster approaching...😉
The article mentioned is in the dialog where I initiated a question about chondroid lesions in femur marrow. It is found in Nature.com and titled "chondrogenesis mediates progression of ankylosing Spondylitis through heterotopic ossification " I had to read it twice to wrap my brain around it.🤯 It gave me insight though. I do tend to produce calcified cysts in soft tissues. Now I'm researching whether my supplemented all clean high nutrition diet is biting me in the...Just today I've been called back for a retake of my boob photos, first time in 11 years. 4 biopsies in my 40s due to calcifications. Ugh. I need to start charging money for my super model portfolio of God's natural implants. If they take all my bumps out there will be nothing left! Like I said, hard to know what to do. Trying not to let it bite me in the...
Do you think that the new supplement could be causing the flare? Sometimes I find it so hard to know what to do to avoid these awful flares. They make me feel like I've been crammed into a trash compactor. And now, after reading Brian's article about the chondrocytes formation it sounds like stopping inflammation does little to nothing to stop the ankylosing bony lesions. UGH! I guess I'll just have to go ahead and raid the Christmas frosted sugar cookies we made last weekend. That'll show Spondylitis who's boss.😋🌲🍪
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