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Real members of MySpondylitisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Anyone In A Similar Situation? What Biologic Worked?

A MySpondylitisTeam Member asked a question πŸ’­
Redmond, WA

Hello everyone. I just turned 18 (October 25) and the day before was diagnosed with non axial spondyloarthritis though my rheumatologist said I likely have early stage AS. I started have excruciating pelvic / penile pain over two years ago. I went to the ER several times because I was worried I had a stuck kidney stone (I have had kidney stones before) but the cat can didnt show anything. I had a cystoscopy which didn't show anything and was diagnosed with "pelvic floor dysfunction" and sent to… read more

October 27
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A MySpondylitisTeam Member

Kidneys - I meant to suggest drinking 3 24oz bottles of water with just a bit of lemon in them every day to keep your kidneys and bladder clean and healthy. Try to eat a diet low in oxylates and a little low in Calcium. 95% of stones are made of calcium/oxylate crystals that kidneys dont break doown in some people. Lemon water dissolves them. Avoid alcohol, it's an inflammatory irritant to the kidneys. Chronic Kidney disease could be the source of your backpain. See a Nephrologist for that, not a Urologist. All the best πŸ˜ŒπŸ™

October 27
A MySpondylitisTeam Member

@A MySpondylitisTeam Member. Your symptoms and tests for suspected kidney stone and non definitive tests are not to be ignored. Ive been plagued with kidney stones off and on since i was your age, 40 years. Frequently, ive been told, by the time patients seek medical care for suspected kidney stone, the stone has already passed. Therefore, nothing on CT. The pain they cause is during their transit as they scratch the urethra or kidney to bladder walls. While in kidney sitting there building up theyre little more than a dull nagging ache. The vomiting that comes is the result of the stone moving to the tube between kidney and bladder and then getting stuck there, causing a backup of toxins that would ordinarily pass in urine but cant due to the stone blocking the tube. This is when they are most debilitating, a 10 out of 10 on most patients pain scales. I typically need two or three doses if morphine for them.
I attached an article about your diagnosis that may be helpful to you. Im not so sure Hunira will be helpful. The reason it is prescribed first is because that is required by insurance companies as standard protocol for all patients to reduce costs. Many, not all, patients feel better due to placebo affect. Before starting a biologic that can throw everything off in your immune system even worse than it already is, demand a cytokine panel be run. Youll need a teaching/research hospital/University to get that specialized test done, but it sounds like youre no stranger to complicated tests since youve had a cystoscopy. Ugh. Ouch. Ive had that too. πŸ˜–.A cytokine panel will tell you which protein molecule (cytokine) is attacking you and, thereby, which biologic actually targets that bad boy. Biologics specialize in specific cytokines. Know if you have TNF-a before taking Humira or Enbrel. Also, you might want to look into the development/manufacturing process of your biologics. Take Humira if you think injections of Chinese Hamster Ovaries are safe. Recombinant DNA from a lab using human and "mammalian" DNA. πŸ€”
You will probably be better served by a specialized nutritionist/dietician familiar with autoimmune diseases and a doctor of physical therapy specialist for diseases of the skeleton. Youre young and still not finished growing. An amazing miracle can happen within and for you if you address this problem outside the unaffective traditional box most drs try to put you in. There are better options for you, but you need to do the work. Reach out anytime, πŸ˜ŒπŸ™

October 27
A MySpondylitisTeam Member

It sounds like you're going through a tough time with your recent diagnosis and ongoing pain. Here are some points from my knowledge base that might help:

- Diagnosis and Symptoms: Nonradiographic axial spondyloarthritis (nr-axSpA) and early-stage ankylosing spondylitis (AS) can cause significant pain and discomfort Show Full Answer

It sounds like you're going through a tough time with your recent diagnosis and ongoing pain. Here are some points from my knowledge base that might help:

- Diagnosis and Symptoms: Nonradiographic axial spondyloarthritis (nr-axSpA) and early-stage ankylosing spondylitis (AS) can cause significant pain and discomfort, including pelvic, foot, and spinal pain. It's common for these conditions to be associated with chronic pain and inflammation.

- Treatment: Starting a biologic like Humira (adalimumab) is a common approach. While some people report quick relief, it can take several weeks to see significant improvement. Patience is key, but if you don't see any improvement after a reasonable period, discussing alternative treatments with your rheumatologist is important.

- Communication with Healthcare Providers: Open and honest communication with your healthcare provider is crucial. If your current rheumatologist is not addressing your concerns adequately, it might be worth seeking a second opinion or finding a specialist who is more responsive to your needs.

- Alternative Therapies: Besides biologics, other treatments like NSAIDs, physical therapy, and complementary therapies (e.g., acupuncture, medical marijuana, biofeedback) can be considered. Discuss these options with your healthcare provider.

- Support and Advocacy: Connecting with others who have similar experiences can be beneficial. Platforms like MySpondylitisTeam offer a community where you can share your story and get advice from others who understand what you're going through.

- Mental Health: Chronic pain can take a toll on mental health. Seeking support from a mental health professional can help manage stress, anxiety, or depression related to your condition.

Remember, it's important to advocate for yourself and find a healthcare provider who truly understands and cares about your condition.

October 27

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