Ankylosing spondylitis - any info?

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brett5
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Ankylosing spondylitis - any info?

Post by brett5 »

I’m a new member of the forum. 51, male, live in the US. 4/4. I have Ankylosing Spondylitis (AS) and I’m curious if anyone else has been diagnosed in this group. I can share more info, but I am most curious about the effect of an anti-inflammatory drug I take - sulfasalazine - 2000mg/day. It’s been a miracle drug for me as it fights inflammation. I’m not a doctor so, obviously, my understanding of it is only as a patient. That said, I wonder if anyone else shares my condition and knows more about AS and 4/4.
NF52
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Re: Ankylosing spondylitis - any info?

Post by NF52 »

brett5 wrote: Thu May 30, 2024 5:32 am I’m a new member of the forum. 51, male, live in the US. 4/4. I have Ankylosing Spondylitis (AS) and I’m curious if anyone else has been diagnosed in this group. I can share more info, but I am most curious about the effect of an anti-inflammatory drug I take - sulfasalazine - 2000mg/day. It’s been a miracle drug for me as it fights inflammation. I’m not a doctor so, obviously, my understanding of it is only as a patient. That said, I wonder if anyone else shares my condition and knows more about AS and 4/4.
Hi brett5,

I put "Ankylosing Spondylitis" into our Search box (under your user name) and came up with this list of posts that mention it, going back to 2015! ankylosing spondylitis
anne from California wrote:
I'm "quoting" anne from california because she has mentioned having AS a few times in her posts, which you can see in the search link. My "quote" will end her an email with a link to this post, so she may be able to share what she's doing currently for her AS. Anne happens to have ApoE 3/3, not ApoE 4/4.

You may also find support from this group, if you're not already a member:
Spondylitis Association of America

Best to you,
Nancy
4/4 and still an optimist!
JulieMorris
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Re: Ankylosing spondylitis - any info?

Post by JulieMorris »

brett5 wrote: Thu May 30, 2024 5:32 am I’m a new member of the forum. 51, male, live in the US. 4/4. I have Ankylosing Spondylitis (AS) and I’m curious if anyone else has been diagnosed in this group. I can share more info, but I am most curious about the effect of an anti-inflammatory drug I take - sulfasalazine - 2000mg/day. It’s been a miracle drug for me as it fights inflammation. I’m not a doctor so, obviously, my understanding of it is only as a patient. That said, I wonder if anyone else shares my condition and knows more about AS and 4/4.
Hi brett5-
Hello! I'm a support team intern, and I'd like to welcome you to this site! You have found a very supportive community here. I see that Nancy already shared some information on Ankylosing Spondylitis with you. While I can't speak to AS, I have taken Sulfasalazine before (for psoriatic arthritis & lupus). I was not on it long, however, since it didn't work for me. Anyway, I understand how hard it can be to find a medication that works well for autoimmune inflammation, so I'm really glad you found something that works for you. I also know that there is constant concern about side effects for the drugs taken for autoimmune disease. I'm sure someone on this forum will be able to give you more specific information on the combination of AS and 4/4.

Since you are new to this site, it would be a great idea to first take a look at our Primer. It is an incredible resource of information about the biochemistry of ApoE4. It offers researched-based prevention strategies and was written by a practicing M.D. with ApoE4. Do not become overwhelmed with all the information. Sometimes it is best to slowly read through it, decide which section resonates with you, and focus on that area first.

The How-To Guide will help you learn how to navigate this site. It includes topics such as navigating the forum, private messaging, and searching.

You can find other members' experiences in Our Stories. Sometimes reading the stories of others helps us realize that we are not alone.

I'm so glad you have joined us on this site, and I appreciate you sharing part of your story. I wish you well with your autoimmune disease and your brain health, and I hope you have a day with little to no pain. Please feel free to reach out anytime with questions or if you just need support. You are not alone. We are here for you.

Take care,
Julie
PhD in Speech-Language Pathology
Functional Medicine Certified Health Coach
Interested in all things brain-related
anne from california
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Re: Ankylosing spondylitis - any info?

Post by anne from california »

NF52 wrote: Thu May 30, 2024 6:57 am
I'm "quoting" anne from california because she has mentioned having AS a few times in her posts, which you can see in the search link. My "quote" will end her an email with a link to this post, so she may be able to share what she's doing currently for her AS. Anne happens to have ApoE 3/3, not ApoE 4/4.
Thanks for tagging me, Nancy!

Brett, as she noted, I have 3/3. Got a bunch of female ancestors who've had dementia, though, so I pop in here now and then to see what's new, and I try and follow a lifestyle that might help prevent dementia, keep my AS dormant, boost my disappearing bone density ... all the things!

My AS is, thankfully, largely dormant, or so they tell me. My first acknowledged flare, the one that got me diagnosed, was over 30 years ago and by far my worst case of sacroiliitis ever. I took diclofenac for a year, then went off it for pregnancy and never went back on because my symptoms never raged like that again. I've been grateful not to have needed biologics or immunosuppressants. My x-rays over the years show "mild sclerosing" in the SI joint. I picked up a diagnosis of psoriatic arthritis along the way, because of some weird psoriasis patches that show up on occasion and the occasional hot finger or ankle joint. I also have Raynaud's, but this, too, is very mild anymore. I seem to have autoimmune activity that starts to flare, then it eases off within a few days. I am HLA-B27+.

I did do an autoimmune protocol diet (AIP) back in 2020 during the pandemic, when being at home all the time made it fairly do-able, and at that point I was trying to calm what felt like autoimmune flares--some unexplainable gut unrest, some psoriasis patches, and SI/tailbone pain. I felt like I was chasing little symptoms and wondered if AIP would identify triggers. It ultimately did not. While I felt great on the elimination phase of the diet and all my nagging symptoms did drop away, reintros were never conclusive. I suspect if I have any food triggers, they're only offensive in combinations and/or after lengthy exposures, and this is impossible to ferret out. Doing AIP did help me identify certain prebiotic fibers as gut irritants, and that alone made the whole experiment worthwhile.

For AS, it sounds like you've found a med that works. Having been in a few forums/groups for AS, I can say that is huge. So many people suffer so much because they can't tolerate a med or a med doesn't work. How any of this factors into your 4/4 status, well, I wish I had info for you. I wish I knew how different meds have factored into my family members' brain health. My mom's dementia worsened right around the time she started taking a statin. She also started taking Evista for osteoporosis. But she also had two knee replacements and one revision surgery, all on the same knee, in a one-year span, drank too much, and had high blood glucose for many years. For all I know, she might have one ApoE4, too. So many mysteries!

A couple AS resources, in case you're interested. There's a Living With Ankylosing Spondylitis Facebook page, and also the KickAS webpage and forum. Not sure if anyone there might have answers to your question, but perhaps! At the very least, people might be pleased to hear from someone whose meds are working.

Anne
60 years old, ApoE 3/3, mother and grandmother have/had late-onset dementia, eager to save brain and optimize health.
Thank you all for sharing your knowledge!
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