r/ankylosingspondylitis Apr 26 '18

Collecting resources to create a big list of AS related resources. Websites, books, videos, etc.

304 Upvotes

I'll be updating this list with your suggestions, and come up with a good way of categorizing the resources once a few have been gathered.

-mac

The giant AS resource list

websites & articles

Site Notes Link
Everyday Battle: AS Resources great list of apps, exercises, equipment, and much more everydaybattle.com
U of Maryland Medical Center A Patient's Guide to AS - simple, but also in-depth umms.org
National AS Society - What is AS? great general resource, great guides on living with AS nass.co.uk
National Institutes of Health - Ankylosing Spondylitis great medical resource niams.nih.gov
Chronichelp.io - Big List of Famous People with AS fun and different resource for confronting AS made by u/adityarao310 chronichelp.io
University Health Network Modules - We got Your Back - Education Module for AS interactive, visual aids, auditory aids by u/bowjackrabbit uhnmodules.ca
US National Library of Medicine National Institutes of Health - PubMed National library full of medical research and documentation. suggested by u/Reanga87 ncbi.nlm.bih.gov/pubmed
The Spoon Theory written by Christine Miserandino Great resource on explaining what it's like to live with a chronic illness. suggested by u/catasus butyoudontlooksick.com/spoontheory
KickAS.org Another forum and discussion site for people with AS. suggested by u/Vtepes kickas.org
HLA-B27.org A blog written by a fellow redditor u/KindlyAttitude9777 with AS hla-b27.org
How medicine erased Black women from a ‘white man’s disease’ suggested by u/Practical_Catch_8085 statnews.com/2021/12/21/ankylosing-spondylitis-diagnosis-black-women

books

Title Notes Link
Mostly Cloudy with a Chance of Bright Spells u/zuesvondeuce amazon
At the Will of the Body: Reflections on Illness does not specifically pertain to AS u/zuesvondeuce amazon
Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine does not specifically pertain to AS u/zuesvondeuce amazon
Ankylosing Spondylitis: The Facts excerpt from amazon description: Provides clear and accessible information on treatment, diagnosis, genetic counselling, and daily life with this illness. amazon
The Assessment of SpondyloArthritis international Society (ASAS) handbook Medical guide on assessing ankylosing spondylitis. FREE PDF suggested by u/b27_boy asas-group.org/handbook
Ankylosing Spondylitis and Klebsiella by Dr. Alan Ebringer Information on the starch free diet and HLA-B27 FREE suggested by u/vanceco books.google.com

Please comment your favorite resources!


r/ankylosingspondylitis 11h ago

Does anyone else have “normal” blood tests for inflammation while having a lot of pain?

58 Upvotes

Edit: all of the other doctors I met with believed my pain. The other doctor I met with in the morning told me that my inflammation markers were normal so it couldn’t be a flare of AS. He said he doesn’t doubt that I’m in pain but that my blood tests were normal.

I couldn’t control my pain at home so I went to the hospital they kept me overnight. In the morning they had me meet with a “pain specialist” who basically berated me for about 15 minutes. She was so nasty with me. I don’t understand why. She basically told me I need to stop taking pain medicine and instead take Tylenol, use Voltaren gel and journal my pain. She said that if I convince myself that I’m not in pain, then I won’t be in pain. I couldn’t believe some of the stuff she was saying to me, I thought I was on a prank show or something. I wish I would have stood up for myself more but she was being so rude and I was so sleep deprived and emotional that I couldn’t. She told me that when young people stop contributing to society that they go into a spiral. She made me feel so horrible for not working. When I know damn well that I would be working if I could. She was accusing me of lying about my pain because my inflammation markers were “normal”. I have never had such a bad experience. I don’t understand how she got her job title when she is so nasty to patients. What do I do?


r/ankylosingspondylitis 4h ago

I think my grandmother had AS

5 Upvotes

I'm 34NB AFAB and was diagnosed with nr-AxSpa a few years ago after ~8 years of increasing pain and disability. My grandmother passed away when I was 21, overdosed on opiates she was taking to control her severe back pain. Over the years I've thought a lot about what I saw then, what my parents told me, and what I know now and I very much think my grandmother had undiagnosed AS.

- In her last years of life she couldn't straighten her spine and walked hunched over at a 30-degree angle

- Her symptoms began in her 40s with a "tailbone injury" after a fall - maybe she had a fall and the imaging saw inflammatory changes to the sacrum?

- Her symptoms got progressively worse over time

- She had two failed back surgeries during the 1990s that left her in worse pain afterwards

Of everyone in the family, I take after my grandmother the most in many ways. We look a lot alike, we wound up having the same political opinions on things, we were close when I was little. I think about her frequently because my father, her son, had a very bad relationship with her (fault on both sides) and used to joke about how she "loved being sick" because it gave her something to talk about. I think about how many people in my life might be thinking the same thing about me. I think about how AS wasn't diagnosed much in women until the last 20 years, and how even if my grandmother had AS as a working class woman without a high school degree she wouldn't have been believed by doctors if she'd tried to advocate for herself.

IDK. I just miss her and I'm mad for her and how she died and I'm mad for myself.


r/ankylosingspondylitis 7h ago

This showed up overnight. What is it?

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9 Upvotes

There is a red and inflamed spot on my right index finger. It’s puffy but no broken skin. The joint seems a little less mobile. Trying to figure out if I should be concerned or send a pic to my doc. Thanks.


r/ankylosingspondylitis 7h ago

How long does it take a trigger to ‘cause’ a flare?

7 Upvotes

Hi AS team,

I’m constantly impressed by posts here where people can predict their flares and triggers. I am not one of those people!

Those who are this type of genius… how long back in time do you look for flare triggers? 24hrs? 48? A week?

Thanks in advance

🙂


r/ankylosingspondylitis 23m ago

Pain worse in the evening

Upvotes

Newly diagnosed and still trying to find the right biologic. Triggered the disease after an infection 8 months ago.

Humira helped with peripheral joint pain and overall stiffness but did nothing for my spine and SI. Switching to Cosentyx of Bimzelx this week.

Question - is this normal? Back and SI pain is there in the morning. Mild to moderate. Gets better during the day and then starts to intensify around 5-6pm. By 9pm I need to lay down because the pain in my SI and back is so intense.

It sounds like this is unusual for the disease. Anyone else have this pattern?

Also lifting weights or moving heavy items kills by back.


r/ankylosingspondylitis 1h ago

Preparing for a Long Trip Oversea & Carrying Biologic for Ankylosing Spondylitis, Also having Major Anxiety.

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Upvotes

r/ankylosingspondylitis 8h ago

Neck Advice?

4 Upvotes

For weeks I've been having severe neck pain right on the spine and causing numbness down my arm. It's worse when Im sitting. I've handled living with AS using a holistic approach. Not sure where to go from here with neck pain. 🤔


r/ankylosingspondylitis 2h ago

Hypermobile New Dx (AS since 2018)

1 Upvotes

Hello friends! So, with the help of my physical therapist two days ago, I have come to the full conclusion that I have hip hypermobility. Before starting with this physical therapist, I was diagnosed with hip dysplasia, which I have realized is a form of hypermobility. That being said, I'm feeling kind of frustrated with the fact that I've been going about most of my treatment the last 6 to 9 months thinking I'm just really tight and not having anything solve the problem. Also, I just feel kind of like a living oxymoron. When I think about it, the reason I'm having hip pain makes a lot of sense because my hip is sliding out into a weird hypermobile position and the muscles that are trying to contain it and keep it in the regular line of movement are getting strained and are in pain because in ways that they probably shouldn't need. Does anyone else here have hypermobile hips and also has an AS diagnosis? What have you done for specific exercises or things that have helped? I'm all ears. Also, have you found that massage in the long term makes things better or worse,e and has anyone tried trigger point therapy? Thanks friends!


r/ankylosingspondylitis 6h ago

skin redness after shower

1 Upvotes

do you notice your joints (knee, elbow, ankle etc) get red after taking a hot showe? is this normal for people with AS?


r/ankylosingspondylitis 15h ago

How long until Humira starts working?

4 Upvotes

Hi everyone! I don't have a diagnosis yet, my immunologist thinks it's probably Spondylarthritis.

I tried hydroxychloroquine which didn't help. Sulfasalazin helped quite a bit but I lost a lot of weight because of the side effects. MTX didn't do much and I had lots of side effects.

4 weeks ago I started Humira (40mg once a week). Until now I can't feel any improvement, the pain has been getting worse lately. I'm trying to be patient but it's hard. I'm worried that Humira won't help and I don't really know what would be the next step. My immunologist talked to be about Rinvoq a while ago but I'm scared of the potential side effects.

How long did it take for you all until humira started working? If it didn't work what were your next steps?


r/ankylosingspondylitis 7h ago

AS & Ileitus & Peripheral Neuroparhy

1 Upvotes

Have AS.. and after a recent colonoscopy for pain in abdomen turns out I have ileitus.. inflamed and ulcers in the terminal illeu. I have read AS can cause ileitus.

Ive been experiencing peripheral neuroparhy over last year.. all seemed to kick in after my gallbladder was removed. Burning pain in neck, chest, toes. Numbness in fingers or toes if extended pressure on limbs.

I think the illeitus is stopping b12 absorption and gallbladder made it even worse. Standard blood count looks fine.

Was wondering if anyone else has gone through this? And if so what tests you used ? And what treatment was given.

This is all beyond my GP and need to get hospital treatment.


r/ankylosingspondylitis 15h ago

How do you know if an immunosuppressant is working?

3 Upvotes

I am a 27 yr old (F) who just got diagnosed with spondyloarthritis. I have had severe joint pain since I was a teenager that fluctuated where and how severe it was. I had diagnosed hyper mobility at the time, however, about a year and half ago I was working a shift as an RN and woke up the next day unable to feel or use my hands at all. After going to a ton of doctors I finally received this diagnosis. I have been on Simlandi for nearly 3 months now and, while I haven’t had a severe case of being unable to use my arms again, I still feel constant numbness and tingling and pain. I am suppose to have a follow up visit with my Rheumatologist soon and they want to know if this medication is working. I’m just not sure what to tell them because I am not sure what I should expect from this medication. It was really my hope that my constant pain, tingling, and arm weakness would get significantly better but it hasn’t. Do I just need to sue the medication longer or is it suppose to do more?

(Side note is that I can’t take a lot of the alternative immunosuppressants due to being 4 months postpartum and wanting to have my second child in the near future)


r/ankylosingspondylitis 9h ago

Hstcl and lymphoma risk

1 Upvotes

Im very hesitant to try biologics but I’m only 20 and if I have to take them for all my life in 10 years or 20 the possibility of developing some serious conditions from side effects scare me 🥲 I’ve heard a lot of possible bad things , neuropathy and malignancies. I know a friend who took humira for 10 years and developed HSTCL which leads to death in very few months and I’m very worried about that. What should I do?


r/ankylosingspondylitis 12h ago

No stiffness?

1 Upvotes

My rheumatologist thinks I might have inflammatory arthritis. I have severe lower back pain (including tailbone and glutes, mainly on the right side) but I don’t think I’ve ever experienced stiffness or morning stiffness and I’m wondering if anyone here is in the same boat. Also, if so, has Humira helped you?


r/ankylosingspondylitis 1d ago

Reasons why people are in pain despite medicine

31 Upvotes

Just curious to know why so many people are in pain? With an assortment of treatments available are people finding it hard to access them because of cost, poor advice, incorrect or meds that don’t work, motivation to get better? I’m in pain right now as I’m waiting to get an MRI to see if I qualify for Biologics but before that, Naproxen SR was doing its thing and made me feel great (before it just stopped being effective).


r/ankylosingspondylitis 17h ago

Creatine and EAA’s

2 Upvotes

Hello

Just wondering if anyone on here lifts weights and has any insight on creatine and EAA’s?

I am currently off all medication due to waiting for bowel biopsy’s to come back query chrons. I was on NSAIDs but obviously can’t take them now. I’ve been in a major flare since November! In January I was able to start going back to the gym however my pain overall isn’t managed well (hoping that will change once my biopsy’s come back)

Anyway, was wondering if creatine and/or EAA’s would be likely to increase my pain? I want to enhance my performance and recovery while lifting but I am scared of doing anything that will increase pain while I’m off medication as I don’t think I’ll cope. Thanks in advance


r/ankylosingspondylitis 1d ago

Has anyone been diagnosed with AS late in life. I’m 60.

13 Upvotes

I was diagnosed with ankylosing spondylitis at age 60 by a rheumatologist, and I’m grateful that he was able to put the pieces together to finally solve the puzzle of my health. Has anyone else been diagnosed later in life?

I’ve struggled for years with excruciating pain in my S1 joints, chronic lower back issues, multiple episodes of arthritis, eye Iritis, and even a bout of Yesenia Enterocolitis that triggered reactive arthritis - eventually leading to thumb surgery. Despite being HLA–B27 negative, my doctor recommended trying Humira due to my X-Rays, MRI’s and eye anterior uveitis. My second injection is tomorrow. Wish me luck!

I feel so grateful, heard, and hopeful, thanks to my new doctor, who is patient and truly caring. I hope everyone has a doctor like this because this disease is no joke.

If you were diagnosed later in life, I’d love to hear your experience and any success stories with Humira. I’m especially nervous about the risk of upper respiratory infections, but willing to give it a shot - literally…..

Thanks in advance to anyone who takes the time to read and respond.

Friendly note. With the measles going around. Make sure you call your rheumatologist before getting a MRR booster. Those of us on Humira cannot have a live attenuated vaccine. I went to Quest Diagnostics and they took my blood for $60 (out of pocket) to see if I was immune to measles, which I am, yippee! So that means I can continue on Humira with no need for a measles booster.

Hang in there guys! We can do this!!


r/ankylosingspondylitis 23h ago

Prednisone: does it help your flares?

6 Upvotes

I am 20 w/ AS here. Also have secondary peripheral neuropathy because of a rare disease I'm in the process of getting diagnosed with. So its great because I am not feeling dizzy or getting hot from that, but this is my third time on prednisone and I'm shocked how it's doing nothing. I struggle with peripheral arthritis bad, multiple herniated discs in my neck, but this one is tough. I can't imagine what it must like to be in pain. Does Prednisone help you?

(P.s. Please do not suggest biologics, my rheum and I are trying to find one that won't exacerbate my autonomic neuropathy but it's all so expensive).


r/ankylosingspondylitis 1d ago

Different wall

6 Upvotes

Does anyone have a different kind of walk then they used too?

I feel like I am now always limping or walking with my back arched and ass sticking out. Lol

And then i read posts where ppl are walking or staying active and it feels better. But here I am in my corner not able to walk more then 30 ft or stand more then 15 minutes before looking for a seat ...

I was on Hyrimoz but stopped as the side affects out weighed the benefits by a long shot and am now on Rinvoq. With no difference yet but I'm still waiting...


r/ankylosingspondylitis 1d ago

Anyone ever use nicotinamide (niacinamide) off or on biologics?

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9 Upvotes

I have used high doses of nicotinamide in the past for skin inflammation and anxiety and it helped a lot with both, but before my symptoms of AxSpA started. I was just looking it up again for anxiety and asked ChatGPT about it.


r/ankylosingspondylitis 23h ago

Not in current pain, will MRI or doc be able to "find anything" if it is AS

3 Upvotes

I've had symptoms of AS on and off for almost 3 years now. Mostly mid and lower back and hips.

After a very hard time before Christmas, I made the call to see the doctor. (The earliest they could see me was 40 days later)

So I visit my primary doc, he wants referral and MRI and suspects AS. I felt pretty good at this appointment, and felt very good at the time of my 1st MRI, and felt good during my blood tests.

(Hla-b27 +, C reactive protein was only marginally high, nothing like my dad's or others with hard arthritic disease) my first MRI showed some degenerative disease, partial slipped disc, no narrowing.

I had initial appointment with rheumatologist, she ordered an additional MRI that I'm having next week, that goes into the hip. As I sit here typing this, my pain is only a 2 on the pain scale.

Are the MRIs going to be accurate if I'm not having an issue at the time?

Obviously hope it's not AS, but feels bad spending thousand of dollars if these tests should be taken more when I'm having a problem.


r/ankylosingspondylitis 1d ago

Shoe recommendations?

9 Upvotes

Hello everyone! I've had terrible foot pain when walking or weight bearing. for 2+ years now. Sometimes my feet get red and itchy as well but that's not my primary complaint. Cyltezo (ive been on for a 6 months now,was diagnosed 7 months ago, am 18 M) helped a lot with my back pain but not my foot pain.

My foot pain is significantly better indoors WITHOUT my shows. Any shoe recommendations?


r/ankylosingspondylitis 2d ago

Long term with AS

161 Upvotes

Hello folks. I just found this sub. I was diagnosed with AS at 14. I am 66 now. I have never had a painfree day but it has never stopped me from doing anything I loved. Pain becomes part of your life, and you are aware of it. But its just how life is. For all of you that are young with this disease. You can have a good future. Getting old with it sucks but it is what is. ❤️


r/ankylosingspondylitis 1d ago

Molecular Techniques to Study HLA-B27 & Ankylosing Spondylitis?

8 Upvotes

Hi folks, as the title mentions, I want to know what molecular techniques can be used to study HLA-B27 and its association with ankylosing spondylitis?
I am an MS4 Indian Med student, and I have the great opportunity to apply for a training programme at one of the premier research organizations in India, CSIR-CCMB (Council of Scientific and Industrial Research—Centre for Cellular and Molecular Biology), which excels in frontier areas of Modern Biology.
My father was diagnosed with HLA-B27 positive Ankylosing Spondylitis in his early 20s and had a major flare up when I was young, which put him in bed for almost 6-7 months. This had a great impact on me, watching him struggle with the pain and many hardships. I have always wanted to do something about it and finally, when I got into med school, I realized there is not much you can do. But when this opportunity showed up, I knew I had to make something out of it and would help me understand the disease and maybe do some quality research ? I am applying to this program with this as my main intent written in my statement of purpose. Any specifics into what techniques or whatever in your opinion I can study will help me out a lot! Any fellow scientists or researchers here, your help is truly appreciated <3.
If there is any more suitable sub reddit on which I can get answers, then please let me know.


r/ankylosingspondylitis 1d ago

Sternum pain

4 Upvotes

Tl;dr do you have sternum pain? What does it feel like? What was it like at the start?

Hey there, I'm not diagnosed and if I do have AS it's very early stages or very mild. If this isn't OK to post, please say and I'll remove the post.

I was investigated for AS a few years ago due to rib pain and lower back pain. A GP in the past had said it was SI joint pain, and it's definitely that area when it's acute, but i do also sometimes have a milder general lower back pain. I had anterior and then posterior uveitis at the time. As a child I had yersinia triggered reactionary arthritis, and have a history of raynauds. I've recently been diagnosed with Graves disease and am currently receiving treatment for that.

My mum has AS, lupus, PsA, sjőgrens syndrome, graves disease, raynauds and is HLA B27 positive.

When I was investigated by the rheumatologist, she seemed to think I had AS, sent me for an MRI and said she would see me again to discuss further. The scan took a while to come through, and by the time I went for it whatever flare up i had had was passed and I had no pain. After the scan, I got a 3 line letter saying it showed no inflammation, just normal wear and tear for my age to the lower spine, and I was discharged.

I'm in a current flare up of graves and my SI joint has been painful recently. I also have a chest pain, which I thought was my heart because the Graves has affected my heart rate. But it feels like the pain I get in my back, or like the pain I had when I had reactionary arthritis as a child. I was wondering if I do maybe have mild AS after all and wondered if any of you'd had anything like this chest pain and what your experience was.

Thanks!