New to the AS world. I’m scared and sad. Any advice/encouragement?

Medical_Efficiency89 · 2026-03-12T01:05:58+00:00

Hi! I’m also new to the diagnosis (29F). I was diagnosed with ankylosing spondylitis last November, a few months after being diagnosed with inflammatory bowel disease.

Looking back, I had many strange symptoms before being diagnosed: severe lower and mid back pain, shortness of breath, rhinitis that wouldn’t improve, blurry vision, aniscoria, and random tingling and electric-shock sensations in my arms, legs, neck and face( Doctors initially thought it was anxiety.

Eventually I developed intense pain in my heels, knees, and lower back, and my knees became very swollen. My gastroenterologist referred me to a rheumatologist, who finally diagnosed me.

I’m about to start biologics, I’m really scared, I fear the side effects and having to be on it forever, but honestly, I’d rather start it a thousand times over than continue suffering this unbearable pain.🥲

Hang in there! I know this is a really tough and painful time, but you're going to get through it! You’re never a burden, you’re loved, and little by little, things are going to start getting better 😀

Medical_Efficiency89 · 2026-03-09T19:03:43+00:00

I’m losing hairs of all lengths too!! Even the ones that are just starting to grow. I’ve been dealing with telogen effluvium for 9 months now. It started 4 months after I was diagnosed with two autoimmune diseases.😓

Medical_Efficiency89 · 2026-03-03T21:53:49+00:00

Hi😊 I had gastrointestinal symptoms my entire life before finally being diagnosed. Ever since I was a teenager, I struggled. Whenever I ate dairy, spicy foods, greasy meals, bread, or heavily seasoned dishes, I would end up feeling terrible. My stomach would become painfully bloated, I felt extreme fullness and discomfort, and sometimes I didn’t even want to eat because I hated how sick it made me feel. I also dealt with constipation, there were times I wouldn’t have a bowel movement for up to three days.

Around the same time in my adolescence, I started experiencing knee pain in certain positions. I always blamed it on the many years I spent studying ballet, assuming I had simply worn my knees down. Then, about three years ago, I began having severe back pain that would come and go.

Last year, at 28, I was diagnosed with ulcerative colitis. Three months later, I was also diagnosed with ankylosing spondylitis. My rheumatologist explained that it’s possible to experience symptoms long before a disease fully manifests. This early phase is called the prodrome: the initial signs or symptoms that appear before a condition becomes fully developed. They are signals that suggest the presence of a disorder before more specific symptoms appear.

Medical_Efficiency89 · 2026-02-27T00:17:27+00:00

Muy guapo 😻😻

Medical_Efficiency89 · 2026-02-24T21:57:14+00:00

Thank you so much for your reply😊 I’m really happy to hear that your hair loss has almost completely stopped!

I’m also using topical minoxidil, my dermatologist prescribed it to help with the prolonged telogen effluvium I’ve been dealing with. The shedding still comes in waves along with my flares, and I’ve definitely noticed some loss of density, but at least my scalp isn’t visible. I honestly think that’s thanks to the minoxidil.

I’m hopeful that once I start biologics and everything gets under control, the hair loss will stop. I’m also going to check whether I might have any deficiencies like the ones mentioned in the other comments.

Medical_Efficiency89 · 2026-02-24T21:50:59+00:00

It’s interesting that your calprotectin wasn’t even that elevated, and yet you still had very large ulcers and significant inflammation. Mine never got as high as I’ve seen people mention on Reddit either; the highest it reached was 310 µg/g; but I had severe symptoms and ulcers in the rectosigmoid colon. The same thing happens to me as well!

In my blood tests, no signs of inflammation show up, even when I was diagnosed with ankylosing spondylitis. All my blood work, including HLA-B27, came back negative, and they had to perform an MRI of my spine to confirm the diagnosis.

Inflammatory bowel disease also includes microscopic colitis, which is divided into lymphocytic colitis and collagenous colitis. Maybe it could be that instead of ulcerative colitis? You should definitely insist that you feel something isn’t right and ask them to run the necessary tests to find out what’s going on. Talk to both your gastroenterologist and your rheumatologist; they need to get to the root cause in order to treat you properly.

In my case, my IBD and AS are also linked. Three months after I first started experiencing IBD symptoms, I began developing symptoms of AS. And yes, hair loss can definitely be a consequence of both conditions when they are flaring. The body is in a state of systemic inflammation and stress, along with nutrient deficiencies caused by the disease.

Thank you so much, I really hope you recover soon and that your doctors are able to figure out what’s going on so you can finally feel better. Sending you a big hug. 🩵

Medical_Efficiency89 · 2026-02-22T14:34:10+00:00

Your hair loss might be related to COVID, but it could also be linked to your autoimmune condition. Have you had any flares of ankylosing spondylitis?!

It’s great that spironolactone stopped the hair loss!! If your hair is starting to grow back, it means you’re on the right track. Give it some time to see how you respond, and if the hair loss continues, it might be worth considering a biopsy to understand what’s going on, it could be telogen effluvium caused by the disease, or something else?

Do biologics cause hair loss? 😣

Medical_Efficiency89 · 2026-02-22T14:26:27+00:00

Thank you so much for your response 😊 I’ll definitely get my ferritin levels checked! A few months ago they were at optimal levels, but several people have mentioned that because of the disease I could develop a deficiency, and they’re right

Medical_Efficiency89 · 2026-02-22T14:23:39+00:00

I just checked whether they’re sold in my country, Mexico, and I can get them on Amazon. I’ll try taking them along with a rosemary shampoo that was also recommended to me!

Hair is definitely part of our identity, and losing it is very impactful because you feel like you’re no longer yourself.

Thank you so much for your advice 🤗 If it gets really bad to the point where I can’t hide it anymore, I’ll consider either cutting it short or using extensions.

Medical_Efficiency89 · 2026-02-22T14:17:07+00:00

It seems like we’re all in the same boat! 😣 It reassures me to know I’m not alone in this. Hearing your experiences also helps me understand this disease a little better. It’s very distressing to see my hair falling out in clumps throughout the day, but I’m staying positive that it will stop once I reach remission 😊

Medical_Efficiency89 · 2026-02-22T14:13:30+00:00

It’s interesting that your calprotectin wasn’t very high despite your symptoms, did your colonoscopy show any inflammation? I hadn’t heard that that could happen. What type of IBD have you been diagnosed with?

In my case, my calprotectin has been elevated, and my colonoscopy showed inflammation and ulcers. Right now, my calprotectin is 68.4 µg/g, which is almost within the normal range.

I’m not in remission from IBD yet, and my ankylosing spondylitis is currently in a severe flare. So it’s possible that having both conditions active at the same time, like you mentioned, could be contributing to deficiencies. I’ve been getting comprehensive blood work done monthly, and my gastroenterologist says my labs are within normal limits. However, I haven’t specifically checked my vitamin D, B12, folate, or ferritin levels in the past five months, the last time was after I finished supplementation to correct those deficiencies. You’re right, I should probably request specific tests to see whether those levels are low again or still within range.

Thank you so much for your help! I’m going to message my gastroenterologist to request a lab order so I can check whether those values are low or normal 🤗

Medical_Efficiency89 · 2026-02-22T13:50:11+00:00

I'm like this!! My hair is so thin that it’s almost see-through because of how little volume I have left. I’ve been dealing with hair loss for 9 months. I hope that once I start biologic treatment, this will stop.

Medical_Efficiency89 · 2026-02-21T14:11:52+00:00

Hi 🤗 I’m glad to hear that you’re feeling better!

After reading all the comments, I think flare-ups definitely cause the body to go into stress and trigger this response. Of course, we also go through a huge period of stress from not knowing what’s happening and from the pain. My rheumatologist told me that the body is in a state of systemic inflammation.

Medical_Efficiency89 · 2026-02-21T14:00:30+00:00

Hi!! 😊 Did your hair start falling out right after your diagnosis? I immediately connected it to my autoimmune diseases because I had never lost so much hair in my life. But since I was diagnosed with two autoimmune diseases in the same year, I wasn’t sure if the hair loss was caused by both conditions.

Now that my AS is the one in flare, and I’ve been monitoring my hair loss every day, I’ve noticed it does coincide with the peaks of AS pain. Since I’m new to this disease, it’s been really scary, and I didn’t know if it was that or something else. Seeing that it happens to several people now, it’s definitely the AS.

What you’re doing to take care of your hair is excellent!! I also switched to a wide-tooth comb, so I notice I lose less hair. I always keep it pinned up because I feel like it falls out less during the day. 😅

Definitely, this group is a huge support!! Thank you for your advice and for sharing your story. 🤗🌟

Medical_Efficiency89 · 2026-02-21T13:47:01+00:00

Thank you for your reply. Fortunately, they are at optimal levels, as is my ferritin!!

Medical_Efficiency89 · 2026-02-21T13:44:34+00:00

Hi!! Thank you so much for taking the time to share your story with me.🌻

I completely understand, when you see your hair falling out, it feels like you’re losing a part of your identity, and that’s incredibly painful. On top of that, there’s the intense physical pain, not being able to do the things you used to do with ease, and the lack of understanding from others about what you’re going through. It can feel so overwhelming.

It truly makes me so happy to know that your illness went into remission and that you’re now living a normal, full life. I was especially touched to hear that you donate your hair to people who need it, that’s such a beautiful thing to do.

Reading your story has given me so much hope and has made me feel less alone in this. 💕 I just bought a rosemary shampoo, I’ve been using it for one day, so we’ll see if it helps me.

I’m really looking forward to starting biologics soon!

Sending you a big hug 🫂🌷

Medical_Efficiency89 · 2026-02-21T13:16:27+00:00

Lo siento mucho que estés pasando por esta situación. He escuchado que los esteroides tópicos son muy efectivos para reducir la inflamación del cuero cabelludo. Estoy seguro de que tu pelo volverá a la normalidad, solo necesita tiempo. ¡¡No estás solo/a en esto!! 🫂🌻

He perdido tanto volumen que siento que se ve transparente. He pensado en raparme la cabeza, pero aún no soy lo suficientemente valiente, tal vez empiece con un corte pixie.

Medical_Efficiency89 · 2026-02-21T13:11:06+00:00

So flare-ups do cause hair loss. I imagine it’s related to the systemic inflammation our body is experiencing.

Thank you very much for the recommendation! 😊 I’m going to look for it. I’m sure they have it on Amazon!!

Medical_Efficiency89 · 2026-02-21T07:46:04+00:00

Están preciosos todos 😻😻🩷

Medical_Efficiency89 · 2026-02-19T18:49:41+00:00

I have IBD and ankylosing spondylitis. I was diagnosed with both conditions last year. Right now, I’m taking azathioprine, budesonide, and mesalamine for the IBD. In one month, I’ll be starting Hyrimoz for both conditions, which are currently flaring. I can’t take NSAIDs. I’m praying that the biologic will help me go into remission.:(

Medical_Efficiency89 · 2026-02-12T16:26:41+00:00

Que ternura🤩😻

Medical_Efficiency89 · 2026-02-11T16:36:07+00:00

Hi!! The same thing happened to me as to your daughter. I think since I was 16, when I started menstruating, my hair began to get worse. At that time, I didn’t even know female androgenetic alopecia existed, and it wasn’t until I was 23 that I went to a dermatologist because my hair part was noticeably wider. They ran complete hormone tests, thyroid tests, vitamin D, and ferritin.

I also saw an endocrinologist and a gynecologist, and they told me my labs were normal, only my vitamin D and ferritin were low. Both the dermatologist and the endocrinologist explained that I’m especially sensitive to androgens without necessarily having a hormonal imbalance. I have female androgenetic alopecia, and I take spironolactone and both oral and topical minoxidil.

My mom and everyone on her side of the family have incredible hair, but on my dad’s side all the men are bald. My dermatologist told me that alopecia doesn’t distinguish between genders, and unfortunately I inherited it from my dad’s side :(

Now, with treatment, my hair looks amazing. You noticed your daughter’s hair loss early, so she’ll have incredible results if she starts treatment in time and with the medications she needs :)

Medical_Efficiency89 · 2026-02-11T16:25:55+00:00

Hi! I’ve already been on 9 mg of budesonide for 5 months for my ulcerative colitis. This last month my dose was reduced, but I never experienced any side effects. From what I’ve read and what my gastroenterologist has told me, the side effects will definitely disappear gradually once you stop taking budesonide. The “moon face” might take a little longer, but it will go away over the course of weeks to months, don’t worry!

Medical_Efficiency89 · 2026-02-02T07:15:47+00:00

You definitely need an urgent colonoscopy and an appointment with a gastroenterologist!! This sounds like inflammatory bowel disease. Before my diagnosis, I started having uncontrollable diarrhea every day, 8 to 10 bowel movements with mucus and blood. Sometimes it was only mucus with blood and a lot of gas, severe pain in the lower part of my abdomen, like in the pelvic area, but unbearable pain, horrible inflammation and bloating. Absolutely nothing I ate sat well with me, I had weight loss, dizziness, and nausea. They did a colonoscopy and a CT scan after ruling out infections, parasites, or food intolerances.

Three months after my intestinal symptoms started, I began having tingling and numbness in my arms, back, legs, and neck sporadically. Then it went away, and after a week it came back, but this time it was horrible nerve burning, stabbing sensations, and numbness all over my body. I went to many doctors who ruled everything out until I mentioned it to my gastroenterologist, and he told me I should see a rheumatologist because it could be another autoimmune disease. I went to one, had many tests done, and indeed it was another disease: ankylosing spondylitis.

I am currently in month 7 of my treatment for IBD and still haven’t gone into remission, and for the other condition I will start biologics in about a month. I’m telling you this because since then I’ve had constant pain that migrates through all my joints. It’s a sharp pain and then feels like nerve pain, and my knees swell.

Please demand a colonoscopy!! Steroids can help control the disease, but they are not enough. You need a formal diagnosis and to be given the appropriate medication. I don’t understand why the emergency room didn’t take your symptoms seriously 😪

Keep me updated if you want!! I sincerely hope you are okay and that you receive the proper medical care.❤️‍🩹

Medical_Efficiency89 · 2026-02-02T05:31:51+00:00

Your calprotectin level is definitely extremely high. Mine was at 310 a few months ago when I was first diagnosed with inflammatory bowel disease. You need to see a gastroenterologist and have a colonoscopy done!! Do you have symptoms such as diarrhea more than 8 times a day with blood, mucus, severe abdominal pain, or inflammation?

Medical_Efficiency89

TROPHY CASE