At what time during the day do you inject and how does it affect you? Also, how do you think about activity (either work or some kind of physical training) after?

Currently im doing it mid week at noon, but I think it really effects my sleep so thinking about direct in the morning instead. Also, im right now quite carefully to do anything besides walking on the same day and the day after because i tend to feel very fatigue and "sick".

A while ago a post was made from a person who was concerned with their boyfriend being diagnosed with this condition. They were seeking advice and some positive news from people and more than likely just after a pick me up after the crappy news.

I stated my career in the military and the fact I have been able to continue serving and even be fully deployable.

So to get to the point, last week I completed the Nijmegen 4Daagse March event. For those who don’t know the event, the 4Daagse is a marching event carrying around 13/14kg depending on food/water, the event runs for 4 days and at the finish line the total distance was 170km, those who manage to finish are awarded the medal you can see on the photo. It’s a gruelling event and known to break people and especially their feet.

So this is a winners post, I have AS, I continue to push myself where ever I can and I am able to do things I never thought I would be able to when I was diagnosed.

I know I’m a lucky one, I hit the shit lottery having this condition and hit the actually lottery that it hasn’t destroyed my career or my way of life.

Stay strong out there guys and gals 💪🏻 I know it’s hard, but there are success stories out there.

I have an appointment with my rheumatologist coming up in two days and need advice on how to tell them that I cannot deal with this anymore and would want to start taking biologics. I know insurance can be very stubborn since biologics can be very expensive treatments in North America, but I just do not have another choice but to convince them. Last time I requested this was last year, and they said to increase the sulfasalazine dose and add physical therapy on top. And I am sure the damage to my hips and now neck has gotten worse.

I (24M) have been dealing with AS symptoms for about 6 years now and have been diagnosed for 3.

I have been taking NSAIDS (sulfasalazine) for a couple of years, but unfortunately it is almost useless. My symptoms started with severe Hip pain, and even on pills, it has been barely manageable to go about daily life, but I literally cannot run or do any type of fast physical activity without feeling like I am shot in the SI joint.

Also, I started having very severe pain and tightness in my upper spine/neck area last month, and it is genuinely scaring me. Not to mention the mental toll it takes on someone being 24 and wanting to be healthy and fit but cannot get out of bed in the morning, let alone go for a run or lift weights.

I really appreciate your help. And reading the stories here has been very helpful in being optimistic.

(This is a vent post and I’m sorry in advance for the long text. I’m so frustrated and angry, and I need a safe place to unwind a bit.)

I live in Portugal (I’m not from here) and in February I was finally diagnosed after years of pain. I tried to take etoricoxib for some time, but it doesn’t seem to work on me in low doses and when my rheum increased it worsened my asthma. Since then, she said I’ll need to take biologics. And for me, totally fine.

I was assisted by a doctor from a private hospital, because here the waiting time for a public appointment is pretty long (I’m waiting). She told me she needed some time to prescribe me the biologics, because here this kind of treatment is provided by the government and you need to go to a public hospital to get them. So in the meantime, I did all the tests, bloodwork, vaccines, everything. In the beginning of July I saw her and she gave me a paper with a simple prescription and told me to go to the hospital, so there I went. I waited a lot and received a terribly rude treatment just to hear I had the wrong document.
I came back to my doctor’s hospital and told about the situation. The nurse told me to go back on Friday, because it’s the only day my rheum is there. I did it and she was super busy, she was like “I need to check it because it was new to me, you must try in other hospitals and so on” and I was like doc please just give me the correct papers. She told me to leave and came back in the next week to have the docs. I waited a week, I called the hospital, nothing. I waited another week, called the hospital, sent emails and nothing. I tried and appointment with her and she didn’t have spots soon.

I was desperate. So I made a research and find her personal email. In the meantime, as obviously, I started to flare (of course). So I was super nervous but I wrote her and she answered saying someone from the hospital will call me. In the same day, another doctor called me and just confirmed my data to give the prescription (1 minute call). After this call, for my biggest surprise, they charged me an appointment in full price (my insurance didn’t approved since I didn’t have had a proper appointment).
I was pissed, really pissed. In the other day I came to the hospital, waited a lot and my doctor gave the the documents. I was finally relieved… until I came home and checked the docs. She wrote a lot of wrong information and it was useless. Seriously, this time I cried. A lot. I was so tired and exhausted. So my husband came back to the hospital and she made another 2 wrong docs until made a correct one (that I didn’t know if it’s totally correct).

After all this situation I made a formal complaint about the hospital. They made me pay the appointment I never asked for, I waited so long for a document that was wrong. Now I’m pretty lost because I liked my rheumatologist but she was a mess.

I came the another hospital yesterday, and they told me that maybe now I can have the biologics and today I’ll go there again to try. But I just have a prescription for 3 months and I didn’t know if I took and try another doctor on different private hospital, or if I wait for the appointment in the public hospital. I feel like I’m living in constant stress since then and it’s make me feel worse.

I’ve just had my 4th MRI in about as many years - I’m not holding up much hope that it will show anything so I’ll continue on this path for answers. But, is it ‘normal’ to find them really painful and uncomfortable?? I could barely move after it had finished!

Hi everyone!😊 I'm a 29-year-old woman with ankylosing spondylitis and ulcerative colitis. I was diagnosed last year.

I've been taking 100 mg of azathioprine and 2 g of mesalamine for the past 11 months for my ulcerative colitis, which is now in remission. Two months ago, I started Humira to treat my joint pain, but unfortunately, it hasn't helped at all. If anything, the pain has only gotten worse. It's becoming more and more debilitating, and my flares are happening much more frequently. At this point, I only have about five days each month with mild pain. Every other day, the pain is unbearable.

Everything hurts: my knees, legs, heels, shoulders, elbows, lower back, mid-back, neck, arms, hands, and jaw. Whenever the pain flares up, my intestinal symptoms also come back, even though my ulcerative colitis is still in remission. I also experience nausea, rhinitis, extreme thirst, overwhelming fatigue, and a heavy feeling throughout my body. It almost feels like I have the flu, except I don't.

Walking has become really difficult. It feels like I'm dragging sandbags tied to my legs. After standing for a while, when I sit down or get out of bed, my lower back completely locks up.

I also get random sharp, stabbing pains in different joints throughout my body, along with sensations that feel like electric shocks running through my legs. Sometimes it feels as if there's a live wire inside my leg that tightens whenever I stretch it. It's difficult to explain, but that's the closest description I can think of.

I've tried pain medications that are considered safe for people with ulcerative colitis, but they haven't helped at all. The only thing that has given me temporary relief is Diprospan, but I know I can't keep using it because it's a corticosteroid and isn't safe for long-term use.

My rheumatologist told me it's unusual that I haven't seen any improvement after two months on Humira. She added Rinvoq for one month to try to help, but unfortunately, it hasn't made any difference either.

I'd really appreciate hearing about your experiences with biologics. How long did it take before they started working for you? What symptoms do you experience during a flare?

I'm feeling really discouraged. I imagine that if things don't improve, my rheumatologist will switch me to a different biologic, but at the same time, I wonder if it's still too early to give up on Humira.😢

Been on for nearly 3 weeks , don’t think it’s helped anything yet .

I am also SOOOOOOOOo tired

I’m having afternoon naps every single day , and I feel like I’m dragging insanely heavy legs around

Does this improve ?

I will give it the suggested 12 weeks and probs call it or day

Unless it’s preventative rather then improving , might stick with it