34f UK For years now IV had lower spine issues currently waiting for third surgery which will be a fusion. I have constantly always been exhausted and in agony. Recently the past year my knuckles and knees get so so sore.
I know I will get referred to rheumatology but curious how long did it take for everyone and what was the whole process of it like?
I am 29F, Dx last year with non-radiographic axspa but have been in pain for 2 years. SI joints are awfully painful of course, but its also spread throughout my whole body. I am so exhausted of all the doctors, medications, etc. I am in school full time and work part time. I used to be such a good student and employee, but I find myself constantly making mistakes. I just feel like my mind is all over the place, I have no motivation, and cannot focus even though I take Adderall. I have really been trying to stuff it down because no one wants to always hear about it, so I just keep my pain to myself. My husband tries to understand but he does not like that I sleep so much, but I am so exhausted and truthfully I don't like it either. I think other people think I should be able to do things like a fully able-bodied person because I am able to somewhat function on like 5 medications, but I hide it a lot. Its so lonely, because for other people, their lives move on while mine feels stuck in this nightmare. I think I am starting to hit a wall and I just wanted to know if this sounds normal for others given this disease, or am I just unable to handle it while others are.
Please let me know your experience.
Hi everyone,
I’m trying to better understand the difference between axial spondyloarthritis (axSpA) and ankylosing spondylitis (AS). My rheumatologist diagnosed me with spondyloarthritis and ordered an SI joint MRI after my X-rays showed irregularity about the SI joints. The MRI reports sclerosis, erosions, and sacroiliitis.
I’m confused because I keep reading that AS is the “radiographic” form of axial SpA, but if MRI already shows erosions/sclerosis and the X-ray showed SI irregularities, how do doctors determine whether it’s considered:
Is the distinction mainly based on whether the X-ray findings are considered “definite” sacroiliitis under criteria, even if MRI already shows inflammatory damage?
Would especially appreciate hearing from anyone who was HLA-B27 negative or diagnosed early!
After I broke out in psoriasis, we decided to go off anti-TNF drugs and try something else. My rheum leaned toward Cosentyx, but it was rejected by insurance. I got on a bridge program where it would be covered for 2 years until insurance approved it, but it wasn't completely knocking out the psoriasis and I found out about the Taltz/Zepbound program, so I was able to convince them to try Taltz, although they acted like Taltz would be hard to approve. It was literally approved within hours of submitting it but somehow it was still in review even though the approval letter was attached to the claim. It took the specialty pharmacy until today to finally fill the request, so I won't get it until next Wednesday due to the holiday. I'm looking forward to it and now trying to figure out the Zepbound program. My PCP is already on board with it, so I'm hoping it won't be too hard.
Hello, all! Nr-axSpA here, diagnosed for 3 years. I was on hadlima for 1.5 years and now on Enbrel for almost 1.5 years.
Recently I have been experiencing what I can only describe as a crunching sensation by my SI joints when I move in certain ways, like leaning/shifting my weight from one foot to the other. It’s not a popping sensation, and it doesn’t feel “stuck”, but it does feel like something is crunching or grinding while I’m moving. It doesn’t cause pain, but it does surprise me every time because it’s something I didn’t experience previously.
Being that I have non-radiographic AS and my rheum didn’t find any evidence of fusion in my initial x-rays, I’m not entirely sure what fusion feels like. I’m curious if this is a sign I might be developing some?
Has anyone experienced something similar, or can anyone with fusion tell me if your experience was completely different? I see my rheum next month and plan to bring it up, but I’m just curious of other’s experiences. Thank you!
The past month I’ve been having on and off flareups in the middle of the night that are really bad I wake up with sharp stabbing things to the point that they make me yell from pain. Last night I had one of my worst ones and I was not able to move for a walk and usually the sharp stabbing pain will last for about 30 seconds to two minutes on my lower back and hips but then go away but last night it lasted for about two hours and I couldn’t figure out how to lay or stand and it was the worst thing I have ever felt.
I am currently waiting for my insurance to approve Humira but I don’t know what to do for now because even when they approve it I saw it takes about three months or more to start helping out. Is there anything I can do for now to help with this pain? Has anybody gotten any shots in their back or anything like that? I cannot bear this and I am scared to go to sleep.
I just started with my first jab of adalimumab last sunday and was very excited about it. I don’t yet feel better but actually worse like my sacro iliac and thoracic spine is actually flaring up. The symptoms started yesterday. Is it a thing with biologics that it has to get worse before it gets better or is it unrelated and I just have to wait for a couple more weeks before it starts working? I had the impression my last flare was over and now it’s more active again but maybe I was just mistaken.
I googled it and apparently there are paradox reactions where the disease gets worse from it but I am very sure it’s too soon to tell at this moment.
I was just wondering if someone had new flares associated with the injections and it still worked?
I am a 46 year old man recently diagnosed with an AS spectrum disorder. However I have had symptoms since I was 21/22. It was bizarre, I woke up one morning and my spinal column felt like it was completely full of inflammation - it was hard to bend it at all. When I turned my neck, in a certain way, I could feel fluid shooting out between the vertebrae very painfully. Over a few weeks the symptoms subsided somewhat but never went away. The fluid shooting sensation started to feel like it was able to move more freely between my vertebrae and gradually went away. But I have not been able to run for more than a few minutes since - the repeated compression on my spinal column, my back is in a great deal of pain for a few days afterwards.
However, prior to all this, I had some knee injuries starting when I was 18. I partially tore my ACL when I was 18 and had a surgery to try to repair the remaining ligament. That failed a couple years later, and I had a full reconstruction within a year of the onset of my AS symptoms.
I was thinking that the injuries and surgeries exposed a lot of different tissues to my immune system, and a great deal of healing and blood flow to those areas. I have family history in both sides for rheumatoid arthritis and AS, and I was thinking perhaps all of this blood flow, healing etc set off the onset with my family history.
Is this plausible?
Hey 20F, looking for some advice with what accommodations I should request for college.
I already have accommodations because I have t1d (as well as celiac but don't need accommodations for it) and got those accommodations when I started college 2yrs ago. I had accommodations through school because of t1d so I knew what to request for those.
I was diagnosed with axspa last November and didn't feel like I needed accommodations then. Now I start the real deal stuff this fall for my major and am currently on Remicade infusions. They'll be every 6 weeks but the infusion is 2hrs and they take a while to set everything up. It ends up being about a 3hr process and I can't drive after because they give me Benadryl (the steroids also destroy my blood sugar but I can manage that for the most part).
It'll be harder to be excused for all of the appointments so I guess that's going to be a main accommodation. Not sure what else would be helpful though.
I try to be as low maintenance as possible, this life sucks and I try to keep it to myself as best I can. This is just going to be one of these things I have no choice but to get some extra accommodations for.
Any tips are amazing, I'm not too worried about being denied accommodations. My rheum will also likely give a letter with zero questions asked. So any tips for what he needs to add would help too.
TIA
We'll see if I'm allowed to post this?
I just started my biologic a month ago and use those nifty automagic injectors. Have you used them? I use them. Well, try to. Well-designed to be foolproof! Ahem...
The very first self-injection went off with_out_a_hitch. Cake. Swabbed the site, popped the top, press and hold per the instructions, phsst, injected, done! w0ot!
Swabswabswab, poptop, press and hold. Nothing. My wife is a CRNA and is watching me from across our kitchen island. Yeah, that glance. Nothing said.
*This is not a recommendation!!*
So, I...
Press and hold slightly more quickly. Nothing. More slowly. Nada. Tap it gently. Bounce it, with enough time pressed that if it is going to play nice it will be easy to notice. Niet. Not gonna happen. Now, I am a tech consultant who also happens to have respectable lab technique, so I can reasonably iterate. I think?
SO.
After more than a dozen attempts and two slight needle pricks from pressing hard enough to, I decide to see what the release mechanism is or isn't doing. Wife still standing across from me, watching, still not saying anything.
I pointed the injector away from me to gently use my index fingernails to try to pull back the sleeve that is supposed to start the process.
And awaayy we go!! We both jumped slightly at the sound as things had been relatively quiet. The injector quickly relieved itself with a laser-like stream of liquid across about 7 feet of space, clearing the island and all over our fridge. It was over in a little more than a second, I think? I thought...dayamn... Thankfully wife was a couple of feet to the side or she'd have gotten it in the face.
She was shocked but me being me got the giggles and could not control them for quite some time.
I *SO* wish I had a video.
Hi all!
Diagnosis of AS, have self diagnosed costo - had a nasty cough, did something to my rib cage, been in stabbing like pain for 5 weeks now with so sign of getting better.
Hurts to breathe, sneeze (omg!), cough and move one of my arms.
Anyone who has had a similar thing happen - how long did it take to heal and did you do anything that helped?
I feel like healing with us spondys is a little different to that of your average bear, so thought I’d ask!
Hi everyone. I've had chronic shoulder joint and lower back pain for many years now. My doctor just confirmed from a blood test that I have the HLA-B27 gene and is referring me to a rheumatologist. It's not confirmed but the more I read about AS the more familiar it all sounds to me. What do you wish you knew early in your diagnosis?
Has anyone had bilateral groin pain that is greater than any back pain they may have?
I was recently diagnosed with AS based on my MRI - hlab27 neg, and before starting biologics I was hoping to find people who may have had similar experiences to me as I don’t fit in the ‘classic’ AS symptom box.
For example: Resting in bed all day is less painful than the pain in your groins from walking, sitting, bending, or standing?
Despite this disease being awful, I feel like my early years (got diagnosed when I was 19) were a lot worse. I remember having a crisis that went on for about a week, during which I couldn't move without having excruciating pain. Walking by myself was nearly impossible and getting out of bed was a whole process that could take like 10 minutes while I was screaming in pain. I remember being very scared just by the thought of that becoming my life.
However, thank God, I never had an episode like that again. If I dare to say, it seems my pain became less suffocating over the years, even though my spine is partially fused already. I wonder if I just got used to the pain and it became something that my brain learnt to ignore?
Do any of you in this sub feel the same way? Did you get better or worse over the years? Tell me your stories!
Hello everyone, after lurking for a while I've finally gathered the courage to post here, sorry in advance for any mistake (english is not my first language).
I'm currently in the process of diagnosis after years and years of debilitating pain (I'm currently 33F, first symptoms started at 15).
My new family doctor finally prescribed me some tests and an urgent rheum visit suspecting an autoimmune disease (But he's not an expert on the matter, so he just prescribed me some general blood work to bring to the rheum).
The rehum is fortunately very young and passionate about her work and she said that based on my symptoms she suspects AS, with probably an overlap with another autoimmune disease since my ENA came back positive to Anti-ro60.
She prescribed a lot more of blood work, complete HLA assay and a MRI of the whole lower back with the study of the hip joints, pelvis and sacroiliac joints.
In the meanwhile she prescribed me etericoxib 90mg, saying me that if it worked it would have been a strong indicator of a diagnosis.
Now I'm waiting for the MRI (Which will be covered by Italian National Health System fortunately, but it will be done in July) and the next blood results, but I have some questions for the already diagnosed members of the community.
First of all, did someone take etericoxib before starting biologics? Did any of you have any benefit from it and after how many days?
Did you have to stop the meds before the MRI? For how long?
And what symptoms did you have before being diagnosed?
Sorry to bother you all, but I'm at the start and in that mental state of being afraid of the diagnosis but at the same time hopeful to give it a name and maybe claim back some quality of life that I actually completely lost.
For the record I have an appointment with my rheumatologist next month and I will discuss this then but I wanted to get a feel for what I’m looking at here. I’ve been on biologics for about 6 months. I started a new job that is very physically demanding on top of the grocery store job I’m currently doing. I only do a total of 40 hours a week but I am moving a lot more than before. The biologics were doing great and giving me some relief from symptoms. My blood tests still say that there’s active inflammation btw. But ever since I started this job my symptoms have been returning. It feels as though I never started the Humira in the first place. I had also noticed myself tripping over my own foot only on the right side pretty consistently to the point that I am concerned. I’ve never had issues with this in the past and now within the last few weeks it’s happening daily. I guess what I am asking is, has anyone else noticed extra pain when they’re more active and has anyone ever had issues with the tripping thing?
​
I keep getting my pain management appointment rescheduled. I have been on taltz for about 4 months newly diagnosed and also have a lot of degenerative changes and compression in my neck and lower lumbar and sacriolitis that the taltz i imagine won't be able to fix. Do I need to just get used to this reality or will pain management offer me anything substantial to really make a difference?
Also, does anyone use mobility aids to avoid/decrease pain? Has it been helpful?
I'm not talking Sacroilitis or back pain/stiffness that we are all so familiar with. I remember what that pain felt like pre biologics, I know my biologics have that mostly under control.
Im talking waking up feeling yuck, best way to describe it is malaise/nausea accompanied by pounding headache usually turns to migraine, stuffy cranium usually behind eye socket and ears, my gut is unsettled and eventually bowel movements will help ease the nausea.
I dont ever get a deep sleep usually wake up a couple times throughout the night.
Waking up like this is draining, I always try to stay positive but mornings like this usually suck any motivation or life out of the day.
My HLA-B27 has just come back negative and is it bad that I’m actually disappointed? I’m waiting for a call from my doctor on the 29th who said depending on the result decides on how we move forward. I’m hoping it’ll still warrant a referral as I’ve been dealing with these symptoms for a while now and it’s affecting my daily life but all my markers aside from CRP and alkaline phosphate levels are normal. Even then my CRP and phosphate levels could be related to another inflammation diagnosis I have of the liver.
I don’t know what to do or what to think, it feels like I won’t be taken seriously 😭
