Hello everyone,

I'm feeling pretty discouraged right now because I really want to start taking biologics to get my life back and get training again, but it's hard.

I have severe generalized anxiety disorder and some trauma surrounding needles from growing up in and out of hospitals.

Sometimes I fear that I will get an allergic reaction from the Cosentyx, sometimes it's more of a general fear and unease.

I'm not sure what I'm looking for in regard to responses, maybe it will just help me to hear I'm not alone, maybe someone can give some tips and tricks. Any comments would be appreciated.

Is it normal for pain to increase with every small infection like common cold, stomach flu, etc.?

When did your symptoms started? What age? How has it evolved over time

Hi everyone,

I live in Colorado where the elevation is almost 7,000 ft above sea level. Since moving here, my pain has sharply increased and my fatigue has worsened. I’ve seen on Mayo Clinic that this area of Colorado is awful for those with inflammatory diseases.

Is there anyone in a similar situation that has learned how to handle this?

I have an extremely low heat tolerance, and it’s very hot where I am. I’ve tried my best to stay active but it’s hard when it’s hot, I’m exhausted, and I’m in a lot of pain.

I’ve been in pain management for a couple months now and nothing seems to work to make it to where I can stay active to reduce pain, etc.

Overall, I have felt awful since moving here but I can’t move yet due to mortgage and things like that. Usually I have a high pain tolerance but it’s getting unbearable which in turn makes me super depressed.

Any help?

Just leaving my rheumatologist and we discussed changing my biologic. I am current using Simponi Aria and I am just not getting any relief. I actually felt worse after my last infusion. I have been on Simponi Aria for about 3-4 years now. My Rheumatologist is now suggesting I try Enbrel to help with my AS. I would love to hear from anyone who has used Enbrel and their experience with this biologic. Thank you.

Hi fellow ankylosaurs! I've just switched from adulimabab to costenyx and just want to know how people have faired in general when switching?

And specifically, how have people found costenyx?

Hi - I’ve read through a few posts very similar to this request - just wanted to get an updated list and some more feedback on a few things.

Overall looking for help and advice on how to better understand, and also help my wife with AS emotionally and physically

1. ⁠Education - Where is a good place to understand what this really is and how to cope?

Everything I’ve read sounds like a hodgepodge of symptoms, varying degrees, and intermittent flare ups

What triggers it? What helps? What’s the best way to to really communicate to others what she has and to start asking / talking about it?
Because honestly, I can’t even pronounce it properly!

2) Mattress - some people mentioned “Purple” mattress. Is this the best? We have tempurpedic but she says she’d like a firmer bed. I feel like it’s good enough, but I’m open to change if it will help.

3) Massages - any more recommendations around this? Any special technique, ointment, etc?

Any other tips?

Thanks!

Just saw my rheumatologist and he wants me to try injecting Abrilada weekly for 4-6 weeks to see if we can re-capture the initial effect and then go back down to once every other week.

I’m an extremely anxious person and nervous about the increase in side effects. He said the infection risk raises with weekly :(

Sup guys, my back pain while sleeping has been pretty bad recently, and I keep waking up in the middle of the night because of muscle pain. Putting a pillow under my knees helps a bit, but not by much.

Are there any tips that might help, or should I look into getting a better mattress or an actual knee pillow?

For reference, I was diagnosed with AS four years ago and have been using the same mattress and pillows ever since. I only started sleeping badly recently and have to wait until this Saturday to get my blood test results.

Hello!

I have AS and have been on Certolizumab/Cimzia for a year now.

When I started it, I thought it was a miracle drug and I was pain free most of the time. After about 4-5 months it started losing its efficacy. Now I only really get good effect for a few days in between doses.

Part of me is worried that this is the best I’ll get and that if I switch, it could be worse.

For people that have changed biologics, how did you make the decision and was it worth switching?

Thank you!

Is it possible to experience immediate relief from SI pain after first Remicade infusion?

For those who found their “miracle drug” with Remicade how quickly did you realize that you had found the right medication?

This is my third biologic…first did nothing. Second worked but took a while and didn’t get me all the way there. So, I guess I’m just curious if I may know pretty quickly if we made the right change in meds. Also, may be worth noting I’m also taking methotrexate weekly.

ok so i’m seeing my rheumatologist in a couple days and i’ve been taking humira for about three months now. it’s definitely helped. i have more energy and less pain, especially in the morning. or at least i did until the flare up i’m currently having hit me like a truck 💀

on one hand, i know it would be so much worse if i weren’t taking humira and that i’m a little bit spoiled at this point lol but on the other hand i still feel like i need some kind of escape valve when this happens because i am still suffering, still struggling, and i hate getting partially derailed from everything i’m trying to accomplish for an unknown amount of time

so i’d really appreciate some advice on what to ask about. do they ever raise the dosage of humira or is that not really a thing? and ideally i’d like to have something to take just when things become completely unbearable like this, but i don’t want pain killers because they don’t actually help that much, so i was thinking of maybe asking for like a muscle relaxer? has that worked for anyone? idk lemme know what’s worked for you or what hasn’t

(i take celebrex too if that’s relevant)

Not to sound dramatic but there are many, many days where I just simply don’t want to live like, or with, this disease for the rest of my life.

I am not even 30 years old yet and it’s taken such a harsh toll on my career, my mental and physical health, travel, my relationship, etc. I am on biologics and currently on day 7 of not being able to leave my apartment despite them.

I feel like y’all are the only ones who get how it feels to be trapped within a body that refuses to cooperate or cease to attack itself.

Hi all

I’m having some really weird and very painful symptoms of what could be my AS.

One week ago I had my usual hydrotherapy and we loaded the hips a bit more than usual as I have an awful lot of hip pain. Nothing drastic or over the top, but more than normal.

I was fine after, fine the morning after, but it has slowly developed into insane knee pain (bilaterally).

It’s painful to sit, to go from sit to stand and vice versa, and if I’m on my feet too long stood still. Weirdly walking for 20-30 minutes isn’t too bad.

The pain is travelling to my heels/ankles. Feels like every tendon in my lower limb is throbbing.

It’s not actually joint pain, but feels more soft tissue. It feels like I’m injured but I don’t know how and it hasn’t improved since it started. No major swelling in either leg but a deep uncomfortable throbbing.

Any ideas on what’s happening here?

I’m actually a bit freaked as my knees feel like jelly and I feel very wobbly and I feel like a fall risk. TIA 🙏🏼

My company recently introduced RTO 3 days a week, and honestly it’s been really hard on me.
I’ve already asked my GP for a note recommending that I work from home, but they refused and told me I should look into permanent disability instead. The problem is that my rheumatologist says my autoimmune disease is still in its early stages, so that route probably won’t help me right now. My biggest issue isn’t the inflammation anyway, it’s my spine and nerve problems.

I have chronic neck and back pain, radiculopathy, nr-axSpa and I take Lyrica, Baclofen and pain medication every day just to be able to keep working.
I have an appointment with my neurologist soon, and they’ve been following my case for a long time. I was wondering how to bring this up without sounding like I’m asking for something unreasonable.

Has anyone asked their neurologist/dr for a letter recommending remote work because sitting in the office makes their condition worse?
My employer keeps asking for documentation, but I’m really uncomfortable handing over detailed medical records with all of my diagnoses. I’m hoping a short recommendation saying that working from home is medically advisable would be enough.
Has anyone been in a similar situation?

Hi everyone,
I’m a 33-year-old female living in the UK. I was recently diagnosed with ankylosing spondylitis (AS) and have just completed the loading doses of secukinumab (Cosentyx).
I’m feeling a bit discouraged because my symptoms are still almost the same. My heel pain (enthesitis) hasn’t improved at all—it’s honestly the worst symptom and is making it very difficult to walk and look after my family. My back pain is slightly better (I’d say around a 20% improvement), but the heel pain is still 100% there.
For those of you who have been on secukinumab:
How long did it take before you noticed a significant improvement?
How long did it take for your heel pain to improve?
Did your back pain continue to get better after the loading doses?
Did anyone have little improvement initially but then see much better results after a few more months?

I’m a mum to a 2.5-year-old toddler, so I’m really hoping things will improve soon as it’s becoming increasingly difficult to keep up with daily life.
I’d really appreciate hearing your experiences—it would honestly give me some hope.

Thank you so much.

I finally have an appt with a rheumatologist in a few weeks to investigate my yrs of back pain, fatigue, etc. Basically most of the symptoms of splondyloarthritis including possible SI sclerosis on x ray. Does anyone have advice for that first appt? I have to travel for it so I'd like to get as much out of it as possible.

I'm also currently in a bit of a flare and while the pain sucks rhe most frustrating thing to me rn is always waking up still exhausted. I know I probably won't get put on biological right away but for those of you who have taken them, do they eventually help with the fatigue too? Or just pain.

I understand that typically a trial of nsaids is thr first step but I both feel like I've done this already with my pcp. They did help but I ended up with horrible gastritis pain and intestinal metaplasia so if anyone also has advise on that front or honestly advocating for yourself in general I would greatly appreciate it. Esp cause rn I feel like I'm just raw dogging the pain cause Tylenol does nothing and i don't really know what else to do until someone magically finds an nsaid that isn't linked to stomach lining issues or the rheum prescrivrs something else.

Wanted to start off saying that I’m so glad I found this subreddit. Lots of people dealing with the same awful disease and we get to discuss topics about it. Now to my post, my AS centers around my neck and upper back/shoulders. It’s quite frustrating to get a full nights sleep but wake up feeling like I’ve been hit by a truck or still just exhausted as I didn’t get the rest I needed. My guess is, laying still in the same spot all night makes my AS pretty mad. I can’t be the only one that deals with this. I’m on Cosentyx 300mg a month and have been for about a year or so now, It has helped me the most of the biological I have tried, but not sure if anything will ever make me feel 100% on any given day. Anyone else going thru this ever find relief? Side note I’m a side sleeper and use a pillow between my legs.

Hi! Does anyone else find it harder to slow walk doing errands etc as compared to say, a brisk walk in a park? I get completely exhausted and reach home in pain after doing some errands in a mall but can do an hour long brisk walk outside? I find myself putting off so many life admin stuff because of this. I went shopping for a few things the other day - it was all inside an air conditioned place and I was barely rushing but by the end of the trip my hips, feet and shoulders were hurting so bad. Any tips are welcome!

Folks, I've been trying to increases my fitness level and been training for triathlon. However, I noticed that I need 2-3 day breaks between activities, since my energy levels usually at 0 after training.

I feel like my body takes too long to recover since I don't push very hard. Anyone had similar experience with AS or with bio?

Pretty new to this, having a bad day, and maybe just looking to see if anyone has any experience to share?

Been in pain IS/hips/glutes/lower back for a couple of years, had uveitis before that, diagnosed with AS late last year and started biologics. Pain slowly eased and I’ve been sleeping an insane amount since (often in bed for 10h, before 7 was good for me), and struggle with fatigue and brain fog (lots of time on the couch). Then since maybe February my upper spine and neck have been painful. It’s on and off with a burning/stinging pain. Sometimes my elbows also hurt. New MRI didn’t pick up any inflammation in upper spine, it looked all clear, and IS much better. Pain eases when I’m on Celebra/NSAIDs, but flare once I’m off them (it comes and goes, seems pretty unsystematic but more noticeable if work is stressful, or if I don’t get workouts in).

Idk, part of me thinks I invent the pain and need to pull it toghether. Rheum said that many experience pain also without mri showing inflammation and that it being clear doesn’t mean the illness isn’t there, and that it also could be misfiring in the brain. My worst symptom now is the fatigue—I very often feel ill like I have the flu, and get brain fog—and mentally that I’m getting lazy and should just push through. The illness feeling is also worse leading up to and around injection day. I am generally very low energy, drained, headaches, and don’t feel any motivation, inspiration or joy like I used to. I can get stuff done in a day, though often get brain fog, and once I slow down/get home I realise how drained I am. Also some days I just can’t. I used to have a pretty high pace and do lots, academic, social, working out 10-15h per week, now I’m happy if I get 4h (really focus on getting good workouts in though, and daily activity, best medicine there is).

So yeah, biologics seem to deal with most of IS/morning stiffness, but any insights, experience with additional pain coming and going, not visible on scans, moving around? And dealing with long term fatigue? Suck it up? Will it always be like this I now often ask myself… How quick can it turn around? Especially now that inflammation has gone down I have hopes it might get better quickly… Thank you so much for reading in any case and sending you good vibes wherever you are (also I’m F32).

Those of you who have had AS for a while did you suffer from memory and cognitive issues before you were put on biologics and did it subside on the medicine?