This is an important question and issue. Thanks for bringing this to our attention, and I so agree with your point of view. Please do keep us updated. I wish you luck in finding answers (and affordable ones at that!)

@A MySpondylitisTeam Member, Thanks for your reply Brian! Yes, I found those prices too when I first started looking into this earlier this year. I'm seeing my Rheumi in a couple weeks and plan to ask about it. If they won't order it there I plan to find a lab and invest in myself out of pocket. I learned through research that it's a technical test requiring a special centrifuge and must be done within 24 hours of the blood drawn. Discussing it with my gynecologist recently, she said that I may need to go to a medical university or Mayo, all a few hours drive away😒. to get it done. Thats something I'm not so sure that I'm desperate enough for yet. I know everyone here relates all too well to the rigors of a road trip longer than 30 minutes on the body. However, if biologics are the answer to slowing, if not stopping, disease progression, it just doesn't make sense to me to keep blindly trying different bios, further stressing the immune system and vital organs like the liver. Afterall, if TNF isnt the bad actor, bios like Humira are a waste of time and money as well as unnecessary risk. So too with the Interleukin disruptors like Skyrizi. I've already experienced worsening and new types of psoriasis as well as acute upper respiratory infection as a result of biologics. I think it's better to determine what a body needs before experimenting with them. I think it's wreckless for the companies developing these new age meds not to accompany the development with plausible testing that can be readily performed by the Rheumatologist offices. We, the patients, pay the ultimate price in their quest for profits. You're probably already aware that each Skyrizi injection costs over $12K.😲 I'll keep everyone informed of when I find out more on this. Stay tuned...

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@A MySpondylitisTeam Member, I know from my personal experience watching my mom all my life exercise every daym that we were at home, and eating healthy all the time that your kids are noticing and learning good habits from you even if they don't acknowledge it now. My mother in law doesn't exercise ever, eats poorly, gets surgery after surgery to "make her more mobile " and she becomes less and less mobile. My mom in law can barely get around on a walker. My mom still does her own housework, takes care of my dad, walks on her own just fine. Mom in law has Osteoarthritis her only diagnosis. My mom has RA, AS, and heart disease. Trust me Mimi, what you do is helping your children know what to do if they are hit with any kind of illness. Keep up the good fight my fellow frontline warrior!💪💪💪

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@A MySpondylitisTeam Member, That is pretty much what my Hematologust said. My Ostopath regular physician sent me for a Hematology consult because for the first time in my life my regular bloodwork was all over the place, liver enzymes way up, neutrophils way down. Hematologist thinks its because of all the biologics, 5 in 3 years, being experimented on me along with occasional short course prednisone, about twice a year for no more than 2 weeks in low dose, 20mg/day at most. The new supplements i mention on my home page, Andrographolide and fucoxanthin most notably, are reported on NIH pages to support and heal liver function. I'll report on my home page what the next bloodwork reveals. It may not be a cure, but every little bit that helps one person is worth looking into for ourselves. I'm all about researching for more ways to be proactive. Doing nothing is apparently not helpful. Your insight from info you learn helps a lot of people. Thank you so much for your time. 😌🙏

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@A MySpondylitisTeam Member. Maybe. Testing for cytokines definitely needs to be made available and covered by insurance. However, making more and better informed drs won't help at all if patients dont read the inserts with their meds about side affects, short and long term. And none of what drs prescribe or do will help if we dont provide the healthiest platform we can manage in order for the surgeries to be successful or medications to have a chance to help.

For example, IF TNF-a is what causes me pain, and IF TNF-a goes into production in my body when I eat sugar, prescribing me a TNF-a blocker is more likely to work if I don't eat sugary treats. For that matter, if that's the only source of TNF-a production for me, it makes sense to quit eating sugary treats than to take a TNF-a blocker that also happens to make me more susceptible to viruses like covid, flu, or RSV all of which could kill me more easily than Spondylitis.

The most lacking area of knowledge is not so much in the medical profession, but more so in the patient population. The next step should be in motivating patients to avoid the triggers of the cytokines causing their problems, to educate them in a way they can comprehend and be motivated to act. For example, I come across people almost daily who aren't aware of the side affects possible with their biologics. So many people go online and ask if something they're experiencing is a side affect to something they're taking and it's listed as a side affect on the inserts that come with their meds. So many people have orthopedic surgery then don't understand why they need to do physical therapy. Education of patients enough to motivate them to act can significantly reduce the level of overall suffering in a population.😌🙏

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