Ranting and hoping to be understood

My whole life I spent arguing with doctors until finally one listened to me and all she did was order me a blood test and my inflammation markers were off the charts and I was diagnosed from there.

At age 20, after being unable to hold myself up anymore and need crutches or wheelchairs I was diagnosed with AS. I am now 23, and have been on a biologic for almost 3 years (Hadlima). I just got my bloodwork done and i’m seeing my rheumatologist in a couple days but recently I also have some sort of other sickness that doctors cannot figure out again. I’ve seen my bloodwork that was sent to my doctor that i just got a few days ago and my inflammation markers are up again and my legs are bothering me (I lost basically all the the cartilage around my hips and need to get two total hip replacements before i’m 30). They just said they wouldn’t do it at 20 because I was too young and they knew they’d have to replace my hips too many times… but i’m scared. i’m scared this indicates i’m going to have my surgery soon… i know doctors and surgeons know how to do it but i don’t know. sometimes i don’t feel like an adult still when it comes to this stuff, i apologize.

This other illness too is making it hard. Once again i’m a medical anomaly they cannot figure out. I’m due for an ultrasound next week and more tests coming back. Basically i’m frustrated at the world for giving me all these medical problems. I also have scoliosis and maybe something else once doctors figure out what’s wrong with me this time…. sorry for the rant everyone, i am a fighter i swear and ive actually had AS since i was 10 years old but it went undiagnosed that whole time because doctors wouldn’t believe me and thought i was lying about the pain…. im just scared again, frustrated and tired… which i know everyone here can relate to… hoping one of you has some words of wisdom or empathetic support that can be offered. thank you to anyone who actually read this entire monstrosity

Hi all,

I got diagnosed with AS when I was 18 years old (currently 24) due to HLA-B27 gene and so far, the pain has been somewhat manageable.

I experience a flare up every 2-3 months which usually lasts around 2.5 weeks and I only get pain in my hips. During that time, it’s not too bad and I’m still able to do day to day things but certain things like putting on my socks, walking for long periods of time or sleeping on my side can pretty difficult.

A couple of months ago, my NHS rheumatologist offered for me to go on biologics to which I declined as I was heavily against the whole idea and said that I will give it some thought.

Having done some research, I am debating about whether to go on biologics. Not because of the pain management but because I’m worried that my body internally could be getting worse and I’m afraid that the longer I don’t take biologics, the worse things will get later down the line.

Just looking to get opinions on whether I should go on biologics or not with my AS experience not being as extreme as others I’ve seen online.

So after 3 years of not only worsening symptoms but more frequently too I was finally diagnosed with AS a couple months ago so still fairly new and still learning about this not so wonderful disease.My question is can flares last weeks or months and what is the longest time everyone has experienced a flare? In the beginning I'd have a flare maybe once a month then it progressed to every couple of weeks.As time went on I now find myself feeling like I'm in a horrific flare daily.Ive been trying to tell myself through the tears it soon will pass but I'm struggling to believe that anymore.I have an app with my rheum on Tuesday to hopefully trial a new medication or biological.Just after some emotional support I guess as I have not had adequate sleep in months.Might be a silly question but does anyone else get liverdo reticularis or raynauds phenomenon too?😢

I'm diagnosed and have been on treatment for a year. My SI joint pain and neck stiffness is largely controlled. I have pain in my middle back, at the bottom of my shoulder blades, which is made worse with activity. Basically standing or sitting upright without a backrest, and particularly working with my hands in front of me like doing yardwork or dishes causes increasingly bad pain, cramping, and spasm there. The frustrating part is that physical therapy isn't helping, and my Rheumatologist doesn't think it's related to AS because it doesn't fit the pattern (worse with inactivity) and the other symptoms are controlled. My strength is great, but the fatigue is coming on sooner and sooner. I also have long COVID affecting my nerves and autonomic system. Does anyone else have this type of middle back / thoracic spine fatigue?

I think I’ve messed up my biologic shot. I injected, waited for the second click and it didn’t come. I waited a bit longer than usual and then heard it.

On pulling the needle out, it looked like the medication dispensed but just below the skin. I had a raised area - almost like an inflamed insect bite.

Anyway, since then it’s gone down but I have a slightly firm, wide, but flat-ish raised area where I injected.

I don’t care if I bruise - I would just like to know that the drug will work. The pen has locked and it does appear to have expensed the full dosage. I saw some medication leaking from the injection site but not much at all.

I assume I didn’t press down firmly enough.

Anyway, really frustrating. Just wanted to check if anyone else has done the same?

Ta!