Is this a myth? Does anyone here obtain humira through one of their programs without having any sort of insurance?

I’m suspect to have AS or some other kind of arthritis. My pain spots are lining up with AS to a T. My question is have and when did you ever visit the ER for pain? I have been down since Tuesday pain levels fluctuating between a 4 to 7 but always constant. I’m getting no relief. I’m on day 3 of sulfasazine and Celebrex. I already have Crohn’s disease and was doing Remicade infusions. I’m supposed to start humira soon but I’m in so much pain. Some chest pains off and on pain and sharp stabs with bending and twisting, super fatigued but not sleeping well. Some mild stomach pain. My husband wants to take me to ER but idk 😩

So after finally thinking I had an answer because of the BME they found in my left SI joint, I couldn’t see a rheumatologist till October. I tried calling others and they required referrals from PCP. So I reached out to my PCP via my portal and shared my MRI findings and he thinks it’s just mechanical inflammation given that there isn’t erosion or sclerosis or ankylosis and I’m HLA B-27 negative. So I don’t need to see a rheumatologist according to him. He said if I had AS I’d be woken up by pain and stiffness and I’d feel severe pain in the morning. I do feel some stiffness in the morning but he said that’s just getting older. The thing is what else can explain the MRI finding? I haven’t had a fall or an injury. And I have pain around both iliac crests which is weird if it’s just mechanical inflammation. Ugh, here I thought I had an answer to my pain and now I discover I can’t even do anything about it. So is the solution then to wait till it gets bad enough to be treated?

Hello I am 32 and have 2 kids under 4. I’m in the UK/ Diagnosed in 2023 after years of suffering . I have been on adalimumab ( amgevita) since August. Initially I felt incredible and all my pain went away . However roll over to now I am in so much pain, burning pain in my legs, can no longer stand for very long (perifial pain???) . My back pain has decreased but my joint pain is really bad/ I’m taking cocodamol and meloxiam. What is going on ? Has it stopped working already ? My review is in a few weeks over the phone with the rheumatology nurse. I have read about people taking other drugs such as sulfasalzine to help with the pain. But this concerns me a lot. Have had to leave my profession of 10 years as my mobility is poor and I’m losing my mind depressed. Now on ESA support group like just feels so bleak / I feel like I’ve lost everything/ also by day 4 or 5 the effects of the injection have completely disappeared. It never lasts the full 14 days. I’m just looking for advice really been on this injection since August and it’s going downhill for me I can’t do this anymore thanks for reading

When pain levels are low or non existent I get anxiety. I have no idea why, anybody else get the same thing??

for the longest time i will get the bone pain i associate with AS and immediately after need to poop. the pain will stay if i dont and goes away almost instantly when i do. but what comes with it is some of the worst pain i’ve experienced, a genuine 10/10. severe stomach pain, legs go numb, feels like im being torn apart up in there, nausea that convinces me im gonna vomit every single time (but i never do), presyncope, extreme weakness, severe hot flashes i sweat through everything im wearing i mean absolutely drenched. it lasts at least 30 minutes. im asking here because its always precursed by the exact bone pain i only get from AS.

my doctor is considering it could be something wrong with my vagal nerve as well, is there any connection between the two? do you also experience this?

Does anyone know why the stiffness increases with periods of low activity? I’m just curious. 🧐

I’ve read so many opinions on this. But what do you think is the best sleeping position to maintain normal spine curvature?

Since AS cause height loss quicker than the normal people have can biologic stop this thing from happening if you get them early ? I’ve been having pain for 1 year and getting diagnosed soon.

Has anyone had any luck with PRP injections? I have ongoing pain and synovitis in my right hip and the orthopedic surgeon said a PRP injection may or may not help. The other option i am exploring here in Australia is MSC stem cells but they are still not TGA or FDA approved.

I injected Humira in my left thigh. It didn't hurt at all, but 3 weeks later I suddenly have mild soreness in that thigh. Could this be due to the injection? Could it be an infection inside the thigh? It's not swollen or warm, just very mildly sore.

I have AS and ulcerative colitis. My colitis is very mild, in remission for many years using mesalamine. However my AS is very active, I have a lot of pain in my spine.

I tried Humira but after a year it hasn't helped my pain enough. I would like to try Enbrel or Cosentyx. However, the doctor does not want to switch me to those biologics because they carry a risk making my colitis worse.

Curious if anyone here with AS and ulcerative colitis has tried Enbrel or Cosentyx? And if so, did it make your colitis worse? In other words, is my doctor right not to let me take these biologics, are overreacting?

EDIT: I know that there are a few other medications besides Humira that can work for both AS and UC, such as Remicade and Cimzia. But the problem is my doctor is saying "Look, because you also have UC, there are very few biologics that could work for you. Humira, Cimzia and Remicade. Maybe Stelara. So you really have to try hard to make each one work for you before you run out of options to try." So, even though Humira hasn't been working that well for me and has quite a few side effects, we've stuck with it for almost a year and she might push me to keep going. After all I'm only 44, and after Humira there are only 2 other biologics I can try, and sometimes a biologic doesn't work for someone at all.

I'm trying to figure out if the doc is overreacting and actually Enbrel and Cosentyx could still be options, so then maybe she wouldn't push to keep going on Humira so much.

Have to hold my nabumetone for a week before an upcoming surgery and hooooo boy. I have had three hot baths today and I'm still miserable. I suppose it is a nice confirmation that my medication regimen works lol

I’ve been searching for information about how Trump’s pharmaceutical and insurance policy changes will affect the cost of biologics meds. Manufacturers of Simponi, Humira and others were sued for price fixing, and began offering subsidy programs to make the cost more affordable. For many of us, insurance only covers part of the cost, resulting in $1000-2000+ per dose after insurance. The subsidy programs are the only way the I can afford the meds, and now that I’m finally setting to see improvements (after living in a non stop flare for years) I’m concerned that Trump’s “burn it all down” policy changes will allow insurance and pharmaceutical companies to send the prices back out of our reach.

So far I’ve not been able to find anything concrete. Does anybody have any leads on this?

Hey y’all. I have been on Humira a couple months now. First 2 injections definitely brought my pain down. Now it’s almost doing the opposite. The night of my injection, I can barely sleep, my hips are in excruciating pain, when I typically don’t have hip issues. Does anyone else have this issue or know why it’s happening? My doctor said I have to be on it 3 months before talking about changing biologics. Any advice or even knowing I’m not alone would be nice.

I tested weak positive back in September, that prompted a rheumatologist appointment. For some reason the order was still in my file and when I went for bloodwork before my primary appointment on Wednesday they tested again. This time it just came up as positive. Does that mean anything? My primary is going to let my rheumatologist know and see if he wants to change anything. Just wondering if it means it's getting worse.

Thanks 😊

I’m recently diagnosed and got put on Enbrel 10 weeks ago. It started helping a ton at the 6 week mark. But last week I fell and had a crazy stressful week at work — one or both of those things has seemingly sent me into what my rheumatologist says sounds like a flare: a mild to moderate uptick in pain across all my painful sites (low back, neck, shoulders, right elbow, buttocks, knees, and heels) as well as fatigue and reduced appetite which I’ve never had before. All of this started gradually a few hours after my fall, which was minor but I guess enough to kick things off.

I’m freaked out but taking solace in that this does sound like a mild-ish flare and not a sudden, permanent change in my disease, or something else that’s scary, and it should pass with time, especially with Enbrel on board. I’m on Celebrex for another week and if I don’t return to baseline , I can do a steroid taper.

What are your experiences with flares while on biologics? How long do they last? Are they less intense than when off biologics? And is the flare journey a linear one where it gradually gets worse before getting better or is it all over the place?

my lovely US health insurer and pharmaceutical company has been wonderful in now making sure I pretty much am going to pay entirely out of pocket (other than $3000) for my yearly prescription of amjevita. (Which they changed coverage rules last year that they would only cover amjevita as a bio similar because it was “cheaper”). I’ve been on the phone for 2 days straight trying to navigate this joke of a system to try to get my medication covered. I just had to order my next prescription which was over $1200 for one month (so I basically have about 2 months covered through this copay card, previously the prescription was $700/month).

I’m self employed so I have a marketplace plan, which I have a high deductible for my rx, which is about $9000 and of course I find out all this stuff after open enrollment ended so I can’t change my plan now until next year. I can mostly afford the medication but it absolutely will affect my already humble lifestyle.

My question is this: I have heard of insurance companies sending people to other countries to get medication cheaper. I’m wondering if anyone from the US has had luck doing this for amjevita or humira. I’m not even worried about them even paying to send me somewhere, and honestly if it was cheap enough I would even just pay out of pocket to go somewhere else to get like a years supply of one of those medications, even if I risk them expiring. I have my next 1 months supply coming so I’m fine currently but I was hoping to find out from other people what they’ve been able to do to get around the racket that is the US healthcare profit system. I’m currently waiting for my dr to call me back to see what other options I have.

TLDR: US health insurer pretty much not covering my medication, looking for options outside of the US to get humira or amjevita.

Thank you!

Has anyone continued on a biologic other than Cimzia in pregnancy? I’ve been in a mental battle with myself for the past year but I think my husband and I are ready to actually try to conceive again later this year.

My rheumatologist deferred me to OB regarding continuing on a biologic other than Cimzia and OB says she’s had patients on many different biologics and she’s yet to encounter any issues so she doesn’t care what I’m on as long as I’m monitored by rheumatology (which I will be).

I’m currently very well controlled on Cosentyx after trying/failing Cimzia, Humira, and Enbrel. But there’s other medications I’m on that work in adjunct which I’d have to definitely stop. Of course I could go into remission is pregnancy which would be the most ideal situation haha. But considering the onset/trigger for my AS seems to have been the hormonal changes in pregnancy, I’m really very stressed about the potential of being in debilitating pain again for 9 months.

Just looking for some support and/or reassurance from people who might have been in a similar situation as me!

I’ll start off by saying that I don’t think I have a hugely severe case of AS, as far as these things go, but like everyone I’ve had my share of pain, fatigue, and disability.

I’m traveling this week, with all the walking to attractions and standing in museums/train stations/etc that entails. I’ve been in more pain than usual as a result, but have been able to push through a lot of the time.

It’s got me thinking about how I’ve come to prioritize ability to function (to work, cook, walk the dog, etc) over simply being in less pain. When I’ve been most afraid of/distressed by pain I have also been most sedentary, which made my world smaller and increased my depression… which increased my pain.

Also, on a purely practical level of managing to navigate the health care system, doctors seem more responsive to “neck stiffness makes it hard for me to turn my head while driving” vs “my neck hurts a lot” in terms of their willingness to problem solve.

How do you think of this? Do you prioritize one or the other? Do you feel more distressed by pain when you’re less active?

Just needing to rant; apologize for the negativity.

I (39F) have Crohn's and then was diagnosed with spondyloarthritis about 18 months ago, which was shocking to me because it was so insidious, i really just somehow thought it was normal to have pain and stiffness in almost all of my joints? Anyway, I started on methotrexate at the end of 2023 and had some success, especially with pain and swelling in my hands and feet. Mid-2024, I started having so much pain in my knees, we added methylprednisone and it helped my knee pain tremendously so we started on the path of starting a biologic. This was in September. My insurance still has not approved it. There was some confusion with the doctor's office and my insurance company that delayed things a few months, then they wanted another round of labs, then said to try again after the first of the year, declined coverage again so MORE labs and my doctor submitted another appeal and now i'm just...waiting? I'm so puffy and swollen from the steroids, but can't walk without pain without them. I can feel the heat and inflammation in my hands and they've started to cramp up again when I'm cooking or doing any kind of repetitive gripping motion. I have no idea how long this is going to go on and i'm just feeling SO beat down.

How do people with chronic conditions do this? How do we continue to find the energy to show up every day and have to keep fighting for ANYTHING to just be able to do normal things? I work full time and my kids are 3 and 5 and one is on the spectrum and I am just so tired. My job was supposed to go back to 80% in office at the beginning of the year, but mercifully my boss has given me more flexibility to stay mostly remote, which is probably the only thing keeping me afloat.

Does anyone have any ideas for things to add or try to help alleviate some of the pain, swelling, or stiffness or mitigate the steroid puffiness until I can get something else? I take turmeric every day, exercise 5x/week if I can (but anything weight bearing with my hands is getting really hard), and try to do stretches for mobility daily and infrared sauna a few times a week.

Hi, I am a 48-year-old male, I was the carer of my Mum who had Ankylosing Spondylitis since I was a child, around the time she passed in 2007, I realised that my psoriasis was flaring badly and within a year my fingers and toes were sore and swollen, I had been having back, hip and knee pain throughout my 20s, but I have an existing hip problem so put it down to that.

Fifteen years ago+ I went to the GP surgery and told them my suspicions, I was greated with "I will tell you if you are ill", after this I had years of back and forth with different swellings and pain and being sent back home with naproxen, any time I saw a different GP or locum they had to speak to the senior partner the GP I mentioned up there, and it would be more naproxen and on my way.

After years of this I lost some grip in my right hand, and after a fall my hand and fingers began to swell and twist, my toes are in the same state, I was finally given a referral to a rheumatologist who I told how much pain I was in and that mum had AS, he just shirked at me, and I was given a diagnosis of Psoriatic Arthritis.

The GP steadfastly refused to send me to a dermatologist, I had to ask the Rheumatologist to help me, I'll be fair dermatology have seen me throughout from referral, but after a few visits the Rheumatologist began dropping me until I had to ask the GP surgery for help

I have plague psoriasis in small patches on my skin with a large bit on the left shin, my toes and fingernails change appearance during flair ups, I often have a feeling like my left eye is being squashed in the socket, every limb has had a flair up, very sore for three to six months then sore but manageable, the joints feel stiff and have some pain like the tendons and nerves are pinched, but where I have so many like that it's affected my mobility, I cannot go outside in the cold without spasms, I haven't been able to stand still without hip and back pain which can last weeks, for over a decade.

Before covid, I felt like I was always fobbed off with "have an X-ray" and a few pain pills by the GP, then lockdowns came, and I have had flair ups and serious skin infections and have seen only a locum GP once since 2019, always being sent to see the paramedic after hours waiting on the phone to get through.

The rheumatologist just kept dropping me for over a year at a time, he said I would be back in within three months in December 2023 and here I am no contact from them or appointments.

Now my son has been diagnosed by his GP and I have booked an appointment for next Tuesday, how do I break down this barrier and get listened to?

When you guys have a flare up is it normal to feel absolutely horrible like you have the flu. I am newly diagnosed in December. Yesterday day I did some household chores laundry swept changed out my bedding and dusted, also cleaned my dining room. This morning I cooked breakfast and did dishes now my body feels like it’s on fire and it feels like flu aches and a headache and just general fatigue could this be that I push myself beyond my limits? TIA for any helpful advice and support

Hi All,

I turned 40 this week, and thought I'd mark the occasion by sharing my symptoms and diagnosis journey.

I'm a medical doctor, specialising in Emergency Medicine. It took me 17 years from first symptoms to diagnosis, but rather embarrassingly for a doctor who specialises in diagnostic area: 16 years for me to figure out the problem!

Aged 0-22: No real symptoms apart from occasional wry neck. Throughout my childhood my father always suffered with neck and upper back pain. He was told it was osteoarthritis in his late 30s, and had some workup for bowel issues in his 40s though no diagnosis. His aunt used to have fortnightly traction physio for unspecified neck pain.

Aged 22: Started getting a shoulder stiffness / ache first thing in the mornings. Would ease off after an hour plus a hot shower. I was a medical student at the time and did think "this sounds like inflammatory pain", but didn't really take it seriously

Aged 22-24: Gradual onset neck pain in addition to morning shoulder stiffness. Worse some days than others. No other symptoms. Was treating it with diclofenac gel with limited efficacy. Graduated and started working as a doctor.

Aged 25: Neck pain and a touch of upper back became a daily feature, though lingering in the background. Saw my GP, started on Naproxen 250mg BD (plus omeprazole). Bloods unremarkable.

Aged 26: Developed attacks of painless episcleritis. Would last for a few days around when my neck was more painful.

Aged 27-30: Naproxen dose steadily increased to stay on top of the pain, until 500mg BD. Was waking 1-3 times a night most nights with neck pain.

Aged 30: Asked GP for Rheumatology referral due to the pain now not being that well controlled with full dose naproxen. Also asked to try low dose amitriptyline. Amitriptyline allowed me to sleep through the nights again and was particularly useful for sleeping in the day during night shifts.

I saw a "Musculoskeletal service" branch of Rheumatology, and was assessed by a Consultant in Sports Medicine (I think from a Rheumatology background). He felt the story of morning stiffness could be inflammatory. We did an MRI. We then made the mistake of finding a bulging C4/C5 disc and blaming the symptoms on that. I was discharged with physio.

Aged 31-35: Neck and upper back pain was a daily feature. Worse in the mornings and there were rarely any days without pain despite the naproxen and amitriptyline. It steadily progressed in severity over the years. On and off hip pain lasting a few days at at time. No real pattern of "flares". I was working a lot of night shifts and sometimes after nights took much longer to recover than others. I also had bouts of fatigue lasting a few days during normal body clock weeks which I just attributed to the night shifts.

Aged 36: Started getting lower back pain during worse pain days. Episcleritis had become constant. Feeling fatigued a fair bit, but blamed this on post-nights.

Aged 38: Quit Emergency Medicine partly to focus on a side gig medical software company and because my social life had dwindled to nothing because all my time off was spent resting. Neck and upper back pain was quite severe. I'd say to people it was a 4/10, but really it was a 7/10 when it was at its worst.

Aged 39: Once I got used to a normal body clock after a few months, I realised I was experiencing attacks of fatigue still which would be followed by a worsening of the episcleritis, neck and upper back pain, followed by lower back pain. I posted my thoughts on Facebook: "neck pain since aged 22, now lower back pain, periods of fatigue, episcleritis... is this Ankylosing Spondylitis?"

I saw my GP who agreed it was suspicious. She referred me to Rheumatology but this was rejected by a non-clinical manager. So I asked for us to do as much of the workup as possible in Primary Care and asked for an HLA-B27, Rheumatology panel, CRP, ESR and sacroiliac x-ray (GPs cannot book MRIs).

I asked to try celecoxib because naproxen wasn't controlling the pain. Celecoxib 200mg BD definitely improved the daily pain by 1-2 points, and had less reflux side effects.

Bloods were normal including a negative HLA-B27, but the X-ray showed bilateral grade 2 sacriolitis. I met 6 of the national guideliens (NICE) criteria, meaning that X-ray was diagnostic. My GP referred me to Rheumatology again.

Two months later I was seen in Rheumatology clinic, but by a Physiotherapist who explained that this was a "gateway" clinic. Despite a fully qualified doctor, my GP, referring a fully qualified doctor, me, to a clinic for a condition where all the diagnostic criteria were met, and with a hard positive X-ray; I was still given an appointment to a clinic which was designed to deflect cases.

The Physiotherapist did a good assessment, agreed it sounded like AS, but stated he could not send me onto a Rheumatologist without a positive MRI first. I objected on the grounds that it was a waste of resources, and that if it were negative or inconclusive it should still not talk us out of the diagnosis given I met NICE criteria. He said the pathway was quite rigid and it was necessary.

So I was on the waiting list for an MRI, that I didn't want, to tell us not very much. I specifically asked if I should pause the celecoxib, to which he said they'd only be looking for chronic change so I could stay on it. (this turned out to be incorrect advice)

I took a holiday to Spain, and while out there I had a flare with quite significant worsening of redness in my left eye with eye pain waking me up from sleep. I was concerned this could be uveitis, so with no clinic nearby and the nearest one with appointments an hour's taxi ride away, I just bought some prednisolone drops and prednisolone tablets from a local Pharmacy. The response to systemic predisnolone 15mg was dramatic. After 2 days my pain almost completely melted away. It made me realise just how much daily back and neck pain I was living with. The fatigue settled by 3 days of oral prednisolone. I tapered it off over 5 days.

Back in the UK, and 3 days after stopping the steroids, I had my MRI. I immediately asked for a copy of the images so I could read them with my own eyes. It was reported as mild disc degeneration and no bone oedema and no ankylosis. However when I looked at it, there was definitely evidence of erosive change in the anterior corner of a couple of vertebrae, which had not been commented on. Based on the MRI report showing "no bone oedema", I got a letter from the Physiotherapist discharging me from clinic, but with the ability to make a Patient Initiated Follow Up appointment if I still had problems. So despite being told the MRI was to look for chronic changes, the absence of acute changes was used to rule out the diagnosis, and the fact I was on antiinflammatories was not taken into account. A wholly incorrect use of a test.

I saw my GP again who was rather disappointed with the Rheumatology appointment and the fact I'd still not seen a Rheumatology doctor despite all the workup we had done. Anticipating a long wait for Rheumatology, I asked to try Meloxicam 15mg to see if it was better than celecoxib. This shaved another 1 point off my daily pain but didn't really stop flares.

By this point, I was getting a flare every 3 weeks or so, each lasting 5 days. The fatigue was the most troublesome feature. I fell asleep at my desk in the afternoon several times during flares. I was not on any opioids, and had stopped the amitriptyline because of the daytime fatigue so this was entirely down to the inflammation.

I rang for a Patient Initiated Follow Up appointment, and also rang the nurse advice line for advice about optimal medications for flare prevention, where I left a message. I was rang back by a non-clinician to advise me that since I had a PIFU appointment request, I should just ask the clinician there. When I explained it was a Physiotherapist who was a non-prescriber, the non-clinician on the phone still stated that I couldn't speak to a nurse and should address questions at the appointment.

Two months later I had my PIFU appointment with the Physiotherapist. He assessed me again, and with the story of dramatic improvement on steroid, agreed this needed to go to a Rheumatology doctor. He booked the only appointment he was allowed to book which was "follow up" for "patient not improving". I was told it would be up to 12 months wait.

I was still getting flares every 2-3 weeks, so I asked for regular prednisolone from my GP explaining that I knew the risks and planned to taper off them slowly by 1mg per day each week. I ended finding 7.5mg prednisolone per day could keep flares mostly at bay.

After 3 months and with no NHS Rheumatology appointment date in sight, and with significant problems keeping on top of work due to fatigue, I lost my patience and paid for a private Rheumatology appointment. I deliberately picked the Rheumatologist who had recently taken over as head of the local NHS Rheumatology department.

At the private Rheumatology appointment, I got halfway through the history when the Rheumatologist stopped me and said: "I've heard enough. You definitely have Ankylosing Spondylitis, there's no doubt". He let me continue and he was not surprised to hear about the steroid responsiveness.

He then shared some interesting recent clinical review papers about how severe HLA-B27 positive cases were now doing better than HLA-B27 negative cases because of the immense delays in making a diagnosis in the latter group. He also explained how enteropathic types (related to Crohn's and Ulcerative Colitis), tend to start with symptoms on the upper back and progress downwards over the years.

He then ranted at some length about how this was a "barn door" case and how his department had missed an opportunity to make the diagnosis 10 years ago (at the Musculoskeletal service), and how it was absurd that I could possibly be in the NHS system as a "follow up" case despite not having seen a Rheumatology doctor yet.

He was particularly critical about the MRI scan, how it was interpreted, and stated that he had many cases where serial MRIs were unremarkable and then all of a sudden they light up with bone oedema purely because they had been done during a flare. He stated that MRIs are only useful as a rule-out if the patient has been off all antiinflammatory medication for two weeks before the MRI. In any case, he said that the diagnosis should have been made the moment the sacroiliac x-ray report came back and thus the MRI should have never been done. He's now redesigning the back pain pathway to cut out all this nonsense.

He has applied for authorisation for me to start adalimumab under the NHS, and I've just had the screening bloods and chest x-ray done to exclude TB / Hepatitis. Due to start in a few weeks.

My take homes from all of this are:

1) The NHS has degraded into predominantly a "fob off" service in a lot of areas:

Hurdles are thrown in the way of patients to try to keep the case load down. Ironically this causes them more work and cost for genuine cases (two extra appointments plus an unnecessary MRI). For so many conditions now, the NHS promises to provide healthcare, but when healthcare is actually required, it is not forthcoming. It would be far better if NHS Trusts were just honest with us so those of us who have the ability to afford to, can get our healthcare elsewhere without delay.

I knew the diagnosis, I knew the system, and still I struggled to get in front of a doctor to receive a formal diagnosis. In case you're wondering why I didn't ask doctor colleagues: I used to work at a different hospital than the one that provides Rheumatology services to where I live.

2) Axial Spondyloarthritis is a clinical diagnosis, not a radiographic one, thus one test cannot and should not be used to rule it out:

This means that you arrive at the diagnosis by weighing up a range of information, predominantly the history of symptoms, plus some tests. You cannot exclude the diagnosis based on a single test. Arguably you can't confirm the diagnosis with a single test without symptoms. This is why you need to be in front of a competent clinician well versed in diagnostics when this disease is suspected, and I would argue that this means nothing less qualified than a Rheumatology Specialist Registrar / Resident doctor.

Any patient pathway for axial spondyloarthritidies which use a single test result as the sole basis to exclude patients, in my opinion as a doctor, is being medically negligent.

The UK NICE guidelines make it very clear that a diagnosis is arrived at clinically, and literally says "Do not rule out a diagnosis of axial spondyloarthritis on the basis of the presence or absence of an individual symptom or sign." and "Do not rule out a diagnosis of axial spondyloarthritis on the basis of the presence or absence of an individual test result."

3) Always question neck / shoulder / upper back pain / lower back pain starting under the age of 35 and lasting for longer than three months:

I've endured years of suffering because I just chalked it up to an assumed family history of young onset osteoarthritis. That's a poor explanation. Until you've got a X-ray / CT scan / MRI showing facet joint osteoarthritis, and a symptom pattern that fits, do not assume it's just OA.

4) If a test does not fit the clinical picture, ask the clinician to explore why and explain their thinking to you:

My MRI ten years ago showed no evidence of facet joint arthritis. A bulging disc can explain focal pain and if irritating nerve roots can explain arm/leg pain. But it does not explain pain elsewhere, nor a morning stiffness pattern, nor a chronic onset starting eight years before. It was a lousy conclusion.

As I used to say to the junior doctors under me in the Emergency Department: "what's the most commonly missed fracture on an X-ray?"... they'd puzzle and throw out suggestions like "scaphoid", "base of fifth metatarsal".

The answer: "the second one".

As in, there is a huge tendency to stop looking once you've found one abnormality causing you to miss other things.

So as things stand, I've got a formal diagnosis, I'm on prednisolone 7.5mg OD + meloxicam 15mg ON, with reasonable symptom control, due to start adalimumab shortly.

After 10 years on Remicaid my body has stopped responding to it. My rheum is putting me on Xeljanz to try something different. Is anyone here taking it (or did take it)? What was your experience like?

Hey all, was wondering if anyone could help me understand what to do when I have 2 doctors telling me different things??

My private rheum saw me in july after having really bad hip pain since Dec 2023 which eventually has progressed to lower back pain and stiffness . My hip xray was clear but he did a lumbar spine mri which showed sacrolitis, and diagnosed me with AS. I have a history of EDS as well. He referred me to an NHS physio in case I needed biologics in the future.

The NHS physio was sent a copy of my mri imaging. The report I got back from my rheum in July noted the following:

'Minor grade 1 retrolisthesis, schmorls nodes, disc bulges, traces of oedema on both sides of SI joints suggestive of a mild degree of active inflammation. Cortical irregularity/ minor erosion and prominent fatty marrow infiltration within the iliac wing bilaterally suggestive of previous significant inflammation." also I'm HLB negative.

He advised regular exercise and I have been in physio since then. However this morning my NHS rheum reviews the imaging and has noted my spine is totally fine, I show no evidence of AS and she believes the inflammation is because of my hypermobility. She says no evidence of arthritis and has advised me to rest as much as possible? She's also declined to do any imaging but my private rheum is sending me for another MRI next week.

The question is, what do I do when I've got such conflicting information? If it is AS and I rest aren't I going to get worse? How can 2 doctors interpret my results so differently? Has anyone been in a similar situation and can advise? I feel like I'm at such a loss right now. Sorry for the long post but any advice is welcome <3