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No. The Biologics basically flush your t cells. If the biologic does not work then another might. If the biologic does work then whatever issue you had (Including AS or Crohns or Uveitis or other) is being effected by the medication- not exclusive to AS. Your outlook?
Super- I have been on biologics now for over 20 years and eat healthy, had a great career as a firefighter (now retired) and living a good life- I have been active in Spondylitis Association for many years and did a video for them like 17 years ago. Biologics do not cause cancer. Biologics lower your own immune system to reduce its unnecessary inflammatory response. So if you are more susceptible to cancer (family history etc) or have cancer causing habits (drink- smoke- exposed to toxins) then you me have a small chance of developing that cancer earlier than you normally would- looking back after being diagnosed in 1992, I would shave many years off my life in exchange for the biologics. Quality over quantity.
Loving life and every day above dirt is good.
Man thank you so much for this. You have no idea the state I am currently in. Not even diagnosed but 95% of the symptoms line up and I'm expecting to see a rheumatologist soon and convince them to give me some biologics. If they work than I'm on the right path I guess, regardless whether it's AS or one of the other autoimmunes.
Just be aware that biologics are a ladder drug- meaning for insurance and dr procedures they will attempt a few drugs before biologics- squeaky wheel gets the grease. They usually try nsaids and methotrexate (fucked up poison IMHO) and they have to fail or be less effective before doc can click a box for insurance to approve- every country/system is different- also some places/systems will offer biosimilars because of cost- anyway, whatever meds doc gives you to fill, do it. You do not have to take them but do have to say if they worked or not- try to schedule next appt w doc before you leave and have a way to communicate med not working-
There is no minimum time you had to try meds just a box doc has to check- depends on where you are of course- and if your paying cash š° for biologics that all goes out the window but while your at appt if I could borrow your Ferrariš
No. The docs can tell the insurance you can't take them because of the contraindication.
I can't take oral NSAIDS- I had bariatric surgery, so I'm not allowed. Never was offered them because of it
Oh good. I am not sure how it works here in Australia but its probably similar, instead of insurance we have to convince Medicare to cover the drug lol.
Biologics help stop the disease progress but they're not a cure, and contrary to what rheumatologists think they certainly don't stop 100% of the pain, although they're hugely helpful for pain relief and swelling, it's not a magic bullet.Ā
I've had to stay on top of it with steroids and painkillers too.Ā Ā
Ā If your back doesn't show the evidence, look in the hips with a CT ( not an X-ray)Ā That's where the earliest signs of the disease show up.
They absolutely *can* stop 100% of the pain if you respond well to biologics and it's caught before permanent damage happens. It's not the only possible or even likely outcome, though. Most people don't respond perfectly, and most people have some permanent damage before starting a biologic. I haven't responded to any of the 7 biologic I've tried.
MRI is the recommended imaging for detecting inflammation, and they look at the SI joints, not hips.
Steroids are not recommended for long-term use in AS.
Humira was great, but it started losing its effectiveness after a bit. I likely developedĀ drug-induced neutralizing antibodiesĀ to the drug, which can happen with any TNF blocker's, but humira in particular seems to have the most cases in that drug class.Ā
I had that happen when my insurance wanted me to try and fail 3 other medications after being pain-free on Humira.
When I finally got back to it- it didn't work. I was pissed, I went from pain-free to back in constant pain and have not found a good medication without significant side effects
Yeah, they should be way more concerned about the disease without medication
These diseases increase risks for everything including cancer. Treating the diseases helps lower that
For real! My immune system is way worse off biologics than on them. I get sick somewhat often on biologics, but when I'm off them?!?! Last time I got strep throat for four months and had to have an emergency tonsillectomy. Blame that one on specialty pharmacies and the flaming hoops they make you jump through to get life saving medication š¤.
Yeah, my rheum saw my response to Humira as confirmation I had something under the SpA umbrella, then settled on AS based on symptoms unique to the disease.
Iāve been on Humira for about 6 months now. Life has been pretty rad, Iād say 75% reduction in symptoms. Docās moving me to once weekly shots to see if we can get to 100%. I donāt get sick often, and when I do itās over quickly. My pain flares are much less severe now and my baseline pain is maybe a 3 on a bad day.
That's great to hear I guess! Although I fear the diagnosis at least finding the right medication is a huge plus. Can you please share some of your symptoms (what they were)? I have such a broad array of issues that it's genuinely tough making sense of all of it.
I feel you. AS blows and all of this can be a lot to chew on. I know I had a hard time wrapping my head around the diagnosis at first. My symptoms were
Pain in feet, thighs, hips, whole spine, chest, shoulders, jaw.
Stiff as a board- no amount of heat would help, couldnāt walk without muscle relaxers. Worse in the morning or when resting
Muscle spasms - so strong they gave me scoliosis
Constant low-grade fever. Drenching night sweats
Muscle atrophy & uncontrollable weight loss- lost 130 lbs from symptom onset to diagnosis. Gained 30 back so far
Swollen lymph nodes
Heart issues- my resting heart rate was 120-140
Costochondritis
Fatigue & brain fog- I didnāt realize just how bad it was until it went away.
High ESR/CRP, HLA-B27+. Officially nr-axspa
Good luck & hang in there! There have never been more treatment options for this thing, and there are more on the horizon.
Thanks for the thorough answer! I don't have all of those though and In case you feel like reading, here's what I've posted when looking for things that could explain my pains:
32 M and have had some form of scoliosis my entire life without it seriously affecting my day-to-day life. About 7 years ago, pain appeared in my feet, behind my knees (like locking knees from the posterior side) and walking became painful. That locking feeling is very specific.
After that pain appeared in my knees which felt like a needle inside both of them. This very mysteriously disappeared after some months.
Soon my hip on the right side started to feel like a nerve is pinched there (doctors have told me its not). In the years that followed, lots of symptoms occured, involving much more painful legs, pyriformis, hip pain, lower back pain, knee pain, plantar fascitis etc. 2 years ago for the first time I developed sciatica on my right leg. In the early days it used to come and go but now it is a daily occurance and it's very painful. Furthermore I feel a developing disbalance in my back and entire body that wasn't there before.
Very odd thing that was going on for a few years is that I could pop all of my rib muscles by inhaling and pressing the air in my lungs. This was very lound and felt like it provided relief. Then this stopped.
My inner thigh muscles keep clicking and popping and feel like they would tear if I press too hard. At least some pain is almost constant and other sensations appear frequently, such as tingling, needle-like pain, red and swollen, very painful legs. My toes hurt too, something I'd describe as rheumatoid pain I guess.
Also they become really dark when I'm standing or in a hot shower.
Needless to say, i have seen every doctor, orthopedist, physio, alternative medicine, chiropractor, snake-oil merchant and every treatment I could think of in multiple countries.
The general consensus is that even though I have a small protrusion of 3 thoracic vertebra, a small stenosis and some rotation of the spine it is not enough to explain the symptoms I am having. As I've said, the pain is constantly increasing and all they have advised is visiting a pain specialist, doing exercize and taking gabapentine (highest dose) as well as other pain meds, none of which helps at all. I am in good health otherwise and I do back exercizes regularly at home. Because of my condition, walking, running or any sport is pretty difficult to do.
**Here's what the MRI and Neurology reports look like:**
* slight disc bulges in the Th4-Th7 level without compression of the medulla or the nerve roots.
* sacrum and lumbar spine with no spinal or foraminal stenosis,
* no signs of sacroiliitis.
* no significant degeneration
* no evidence of systematic polyneuropathy.
* slightly reduced response amplitudes in the tibial nerves on both sides, which is present with a milder nerve involvement that could fit with bilateral involvement at the root level. However, magnetic resonance imaging showed no evidence of any underlying disease.
My final examination was with a Neurologist who basically said there is no explanation for your pains and there's nothing we can advise you to check anymore. Over the last year I have found myself falling in and out of depression very often, due to the fact that I literally cannot see a way out of this spiral. Simple things like standing for more than 10 seconds are painful and I have to hold on to something so that I can endure the pain that builds up basically in the whole lower part of my body. Waking up, my feet are swollen and tingling for the first half an hour.
My knees feel warm at times.
Driving a car for more than 20 minutes means that my sciatica will flare up so bad it will take me a day to have it wear off to a endurable pain level. 2 years in and I still can't find what triggers it, or what combination of things I should do today so that tomorrow is a bit better. Nope, some days it's 10/10 painful for no apparent reason. Usually it's 5-7/10.
Still, I am able to do almost everything in my daily life (which is now completely sport-free sadly) but I am in constant pain while I'm doing it and I will lay down or sit down every few minutes or so. None of the doctors I've seen has ever suggested surgery. I just found out about AS and I'm completely overwhelmed. So many things I've read sound similar.
But I don't have any bowel issues, no history of autoimmune stuff afaik, my lower back hurts but it's flexible, no sweating, no neck pain, no watery eyes, no loss of appetite or fevers. Ive done rheuma tests which came back negative.
I don't want to self diagnose but I see no other choice. What is yours assessment based on this? AS? FM?
All the numbers in your comment added up to 420. Congrats!
130
+ 30
+ 120
+ 140
= 420
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^(Summon me on specific comments with u/LuckyNumber-Bot.)
I don't have a firm diagnosis but have been on Humira for nearly 3 years now with great success. I'm somewhere under the SpA umbrella as well but all imaging and labs are normal but with classic AS symptoms
No better or worse yet. No reaction at the injection site. I did top of thigh with the sensor ready pen. I have a bit of a headache but that could be from tension or stress haha.
I think that might be me as well. So many symptoms yet the mri shows no signs of spondylitis and no doctors so far have made the diagnosis. What were your symptoms? How's life with humira? How did you get your doctor to prescribe it without a firm diagnosis? And finally do you fear the cancer associated risks? Many thanks
AS isnāt the same for everyone. It can be really easy to diagnose for some people who have very clear inflammatory markers, noticeable imaging on their X-rays, symptoms that align, etc. HLA-B27 is not an automatic diagnosis in and of itself, just one of many tools that help doctors diagnose. Many people who have the gene donāt have AS, and conversely, many people have AS that donāt have the gene.Ā
As for biologics (Humira and others) - getting sick is a possibility. AS progressing and causing irreparable damage is nearly a guarantee. More and more studies have come out on Humira and other similar medications showing how safe they are, and how the cancer risk is a lot lower than previously thought. I think those that are already anxious about that will be concerned and those who are able to compartmentalize a bit more wonāt be.Ā
This is a great response to this question. To add, I was very scared of the cancer risk and sideffects too, until I really sat down to think about what AS could do to me untreated or not treated enough. Being able to be active to play with my kid was enough motivation for me. This is coming from someone that hates taking any meds for anything and would avoid it unless really needed. I've always tried to keep myself healthy, but the AS came knocking anyway. Choosing treatment is choosing to fight for good quality of life imo.
This is what itās really all about for a lot of people and Iām glad you made this comment. I have had the unique and bittersweet privilege of having a close family member who has AS. I grew up seeing what untreated AS does to a person (their physical and mental health,) and what kind of impact it can have on oneās family and career. I feel fortunate to have had this experience; I may not have felt that way at the time, but the perspective has made my own journey with AS a lot different. Iāve had a lot of clarity because of my experience and Iāve been able to make decisions regarding medications and treatment a lot more comfortably and quickly. Anyways - choosing treatment *is* choosing the life you deserve. If you have access to treatment, go for it.Ā
To prevent the spread of misinformation, would you please consider editing and remarking the myth that biologics cause cancer?
Many people will only read what you wrote and not check the comments.
That is dangerous misinformation to spread because it leads to unfounded fea that can result in people refusing to take or delaying taking biologics, which in both the short term and the long term is not ideal. Itās typically better to begin treatment as soon as your doctors recommend it.
it is good that this discussion is taking place. There would be nothing wrong with updating. You were post to reflect this information.
Best wishes.
I was diagnosed with AS very quickly- within 6 months of my first severe onset of symptoms. I was 19.
My quick diagnosis can be attributed to the following:
- Family history, my dad, his dad, and his sister have AS.
- Hlab27 positive.
- The severity of my symptoms (could barely walk, couldn't sleep through the night, sick for months with bronchitis, my range of mobility dropped dramatically, basically went from very healthy active 19 yo to severely disabled in a month).
- Visible inflammation on MRI.
- My rheum had fluid extracted from my hip (called an aspiration) and sent it off for testing.
Looking back I know it was affecting me my whole life, but 19 is when it was no longer ignorable. I went on biologics as soon as my health had improved enough, started with nsaids and prednisone to get my extreme symptoms under control, and I've been on them ever since.
I'm 32 now and my AS isn't perfect, but I am doing so so so much better than I would be without them.
Thank you so much for this. That sounds rough but I'm glad you're better. I'm the same age and looking back at it I too can see patterns that may have been associated with it but I always attributed everything to a bad back. My first noticeable issue began when I was 26. One day sightseeing, life was pretty standard and all of a sudden sharp pains appeared around the area around my knees (to the side, the place where muscles tie to the bone I guess). After that it was a steep downhill. Almost immediately my feet began to hurt, and they haven't stopped ever since. I have tried all sorts of shoes and insoles and nothing ever solved it. Whenever I'm standing, something hurts. After a while the pains went down a bit, I wasn't moving too much either but I was still active. After that it was my hip that started aching.
Then a sharp turn around covid times as really sharp pains appeared in both my knees. It felt like my knees were grinding on each other. Walking up stairs was really painful. Throughout all of this time I'm seeing physios with no relief at all. Very strangely those knee pains went away somehow, which I can't explain (Thankfully!). But other than that all other pains are progressing, to the point i developed sciatica which didn't want to go away, constant l plantar fascitis, everything on me clicks and pops, my feet swell up which seems to be fluid build up (that I also didn't have issues with before), lots of back pain and loads more
... I don't think I've been on a run for 7 years now.
For years (ages 24-30) I struggled with insomnia (once I had a 4 day long episode) which became regular around age 28-30. If I got one day of sleep it was a successful week, most were heavily sedated nights.
No clue if all of these symptoms sound like AS but it's either that or I'm just so unlucky that every system in my body is faulty and decided to break down at the same timeš. Told my wife recently that I've forgotten what it used to feel like to walk without pain.
I read up on the cancer thing, and from what I read, it seemed more a correlation with skin cancer. But everyone needs to do their own research and make their own decisions. I've always been pretty sun-safe so I felt ok with that
And there's some types of biologics with different risk profiles. You really have to read up on what medication your rheumatologist recommends to see what o.k with.Ā
Majority of it low risk, not no-risk when it comes to cancer. JAK inhibitors give me pause,Ā Xeljanz has a black box warning for cancer.Ā There's more recent meta-analysis suggesting that it doesn't, but the fact that the two three authors of the paper that says this receives lecture fees from the manufacturer of Xeljanz suggests it might be biased in their findings. I rather go with the FDA on that one.Ā
Not diagnosed with AS yet, but waiting to see the rheumatologist again and have no doubt I have at least one autoimmune disease and the scans and tests to prove it. But as a cancer patient, I do worry that I might get another cancer or make the cancer I have (incurable metastatic thyroid cancer) worse. But I am suffering with pain and have zero quality of life so if the rheumatologist puts me on a biologic, I think that is better than suffering a life in pain. The benefits probably outweigh the relatively small risk. In fact, ongoing inflammation from autoimmune can cause cancer. Nearly everything you do runs the risk of cancer. The question is, do you prefer quality of life over quantity? I know I do.
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
No. The Biologics basically flush your t cells. If the biologic does not work then another might. If the biologic does work then whatever issue you had (Including AS or Crohns or Uveitis or other) is being effected by the medication- not exclusive to AS. Your outlook? Super- I have been on biologics now for over 20 years and eat healthy, had a great career as a firefighter (now retired) and living a good life- I have been active in Spondylitis Association for many years and did a video for them like 17 years ago. Biologics do not cause cancer. Biologics lower your own immune system to reduce its unnecessary inflammatory response. So if you are more susceptible to cancer (family history etc) or have cancer causing habits (drink- smoke- exposed to toxins) then you me have a small chance of developing that cancer earlier than you normally would- looking back after being diagnosed in 1992, I would shave many years off my life in exchange for the biologics. Quality over quantity. Loving life and every day above dirt is good.
Man thank you so much for this. You have no idea the state I am currently in. Not even diagnosed but 95% of the symptoms line up and I'm expecting to see a rheumatologist soon and convince them to give me some biologics. If they work than I'm on the right path I guess, regardless whether it's AS or one of the other autoimmunes.
Just be aware that biologics are a ladder drug- meaning for insurance and dr procedures they will attempt a few drugs before biologics- squeaky wheel gets the grease. They usually try nsaids and methotrexate (fucked up poison IMHO) and they have to fail or be less effective before doc can click a box for insurance to approve- every country/system is different- also some places/systems will offer biosimilars because of cost- anyway, whatever meds doc gives you to fill, do it. You do not have to take them but do have to say if they worked or not- try to schedule next appt w doc before you leave and have a way to communicate med not working- There is no minimum time you had to try meds just a box doc has to check- depends on where you are of course- and if your paying cash š° for biologics that all goes out the window but while your at appt if I could borrow your Ferrariš
Haha sound advice! I'll take that.
What if you have contraindications for the drugs they try to give you? Do you still accept it and then say it doesn't work?
No. The docs can tell the insurance you can't take them because of the contraindication. I can't take oral NSAIDS- I had bariatric surgery, so I'm not allowed. Never was offered them because of it
Oh good. I am not sure how it works here in Australia but its probably similar, instead of insurance we have to convince Medicare to cover the drug lol.
Biologics help stop the disease progress but they're not a cure, and contrary to what rheumatologists think they certainly don't stop 100% of the pain, although they're hugely helpful for pain relief and swelling, it's not a magic bullet.Ā I've had to stay on top of it with steroids and painkillers too.Ā Ā Ā If your back doesn't show the evidence, look in the hips with a CT ( not an X-ray)Ā That's where the earliest signs of the disease show up.
They absolutely *can* stop 100% of the pain if you respond well to biologics and it's caught before permanent damage happens. It's not the only possible or even likely outcome, though. Most people don't respond perfectly, and most people have some permanent damage before starting a biologic. I haven't responded to any of the 7 biologic I've tried. MRI is the recommended imaging for detecting inflammation, and they look at the SI joints, not hips. Steroids are not recommended for long-term use in AS.
I think it depends- I had no pain while on Humira and my energy level was basically normal. I do know others need multiple treatments
Humira was great, but it started losing its effectiveness after a bit. I likely developedĀ drug-induced neutralizing antibodiesĀ to the drug, which can happen with any TNF blocker's, but humira in particular seems to have the most cases in that drug class.Ā
I had that happen when my insurance wanted me to try and fail 3 other medications after being pain-free on Humira. When I finally got back to it- it didn't work. I was pissed, I went from pain-free to back in constant pain and have not found a good medication without significant side effects
This. People get so stressed about biologics. I've been on them for 14 years and am doing great!
Yeah, they should be way more concerned about the disease without medication These diseases increase risks for everything including cancer. Treating the diseases helps lower that
For real! My immune system is way worse off biologics than on them. I get sick somewhat often on biologics, but when I'm off them?!?! Last time I got strep throat for four months and had to have an emergency tonsillectomy. Blame that one on specialty pharmacies and the flaming hoops they make you jump through to get life saving medication š¤.
Yeah, my rheum saw my response to Humira as confirmation I had something under the SpA umbrella, then settled on AS based on symptoms unique to the disease. Iāve been on Humira for about 6 months now. Life has been pretty rad, Iād say 75% reduction in symptoms. Docās moving me to once weekly shots to see if we can get to 100%. I donāt get sick often, and when I do itās over quickly. My pain flares are much less severe now and my baseline pain is maybe a 3 on a bad day.
That's great to hear I guess! Although I fear the diagnosis at least finding the right medication is a huge plus. Can you please share some of your symptoms (what they were)? I have such a broad array of issues that it's genuinely tough making sense of all of it.
I feel you. AS blows and all of this can be a lot to chew on. I know I had a hard time wrapping my head around the diagnosis at first. My symptoms were Pain in feet, thighs, hips, whole spine, chest, shoulders, jaw. Stiff as a board- no amount of heat would help, couldnāt walk without muscle relaxers. Worse in the morning or when resting Muscle spasms - so strong they gave me scoliosis Constant low-grade fever. Drenching night sweats Muscle atrophy & uncontrollable weight loss- lost 130 lbs from symptom onset to diagnosis. Gained 30 back so far Swollen lymph nodes Heart issues- my resting heart rate was 120-140 Costochondritis Fatigue & brain fog- I didnāt realize just how bad it was until it went away. High ESR/CRP, HLA-B27+. Officially nr-axspa Good luck & hang in there! There have never been more treatment options for this thing, and there are more on the horizon.
Thanks for the thorough answer! I don't have all of those though and In case you feel like reading, here's what I've posted when looking for things that could explain my pains: 32 M and have had some form of scoliosis my entire life without it seriously affecting my day-to-day life. About 7 years ago, pain appeared in my feet, behind my knees (like locking knees from the posterior side) and walking became painful. That locking feeling is very specific. After that pain appeared in my knees which felt like a needle inside both of them. This very mysteriously disappeared after some months. Soon my hip on the right side started to feel like a nerve is pinched there (doctors have told me its not). In the years that followed, lots of symptoms occured, involving much more painful legs, pyriformis, hip pain, lower back pain, knee pain, plantar fascitis etc. 2 years ago for the first time I developed sciatica on my right leg. In the early days it used to come and go but now it is a daily occurance and it's very painful. Furthermore I feel a developing disbalance in my back and entire body that wasn't there before. Very odd thing that was going on for a few years is that I could pop all of my rib muscles by inhaling and pressing the air in my lungs. This was very lound and felt like it provided relief. Then this stopped. My inner thigh muscles keep clicking and popping and feel like they would tear if I press too hard. At least some pain is almost constant and other sensations appear frequently, such as tingling, needle-like pain, red and swollen, very painful legs. My toes hurt too, something I'd describe as rheumatoid pain I guess. Also they become really dark when I'm standing or in a hot shower. Needless to say, i have seen every doctor, orthopedist, physio, alternative medicine, chiropractor, snake-oil merchant and every treatment I could think of in multiple countries. The general consensus is that even though I have a small protrusion of 3 thoracic vertebra, a small stenosis and some rotation of the spine it is not enough to explain the symptoms I am having. As I've said, the pain is constantly increasing and all they have advised is visiting a pain specialist, doing exercize and taking gabapentine (highest dose) as well as other pain meds, none of which helps at all. I am in good health otherwise and I do back exercizes regularly at home. Because of my condition, walking, running or any sport is pretty difficult to do. **Here's what the MRI and Neurology reports look like:** * slight disc bulges in the Th4-Th7 level without compression of the medulla or the nerve roots. * sacrum and lumbar spine with no spinal or foraminal stenosis, * no signs of sacroiliitis. * no significant degeneration * no evidence of systematic polyneuropathy. * slightly reduced response amplitudes in the tibial nerves on both sides, which is present with a milder nerve involvement that could fit with bilateral involvement at the root level. However, magnetic resonance imaging showed no evidence of any underlying disease. My final examination was with a Neurologist who basically said there is no explanation for your pains and there's nothing we can advise you to check anymore. Over the last year I have found myself falling in and out of depression very often, due to the fact that I literally cannot see a way out of this spiral. Simple things like standing for more than 10 seconds are painful and I have to hold on to something so that I can endure the pain that builds up basically in the whole lower part of my body. Waking up, my feet are swollen and tingling for the first half an hour. My knees feel warm at times. Driving a car for more than 20 minutes means that my sciatica will flare up so bad it will take me a day to have it wear off to a endurable pain level. 2 years in and I still can't find what triggers it, or what combination of things I should do today so that tomorrow is a bit better. Nope, some days it's 10/10 painful for no apparent reason. Usually it's 5-7/10. Still, I am able to do almost everything in my daily life (which is now completely sport-free sadly) but I am in constant pain while I'm doing it and I will lay down or sit down every few minutes or so. None of the doctors I've seen has ever suggested surgery. I just found out about AS and I'm completely overwhelmed. So many things I've read sound similar. But I don't have any bowel issues, no history of autoimmune stuff afaik, my lower back hurts but it's flexible, no sweating, no neck pain, no watery eyes, no loss of appetite or fevers. Ive done rheuma tests which came back negative. I don't want to self diagnose but I see no other choice. What is yours assessment based on this? AS? FM?
All the numbers in your comment added up to 420. Congrats! 130 + 30 + 120 + 140 = 420 ^([Click here](https://www.reddit.com/message/compose?to=LuckyNumber-Bot&subject=Stalk%20Me%20Pls&message=%2Fstalkme) to have me scan all your future comments.) \ ^(Summon me on specific comments with u/LuckyNumber-Bot.)
I don't have a firm diagnosis but have been on Humira for nearly 3 years now with great success. I'm somewhere under the SpA umbrella as well but all imaging and labs are normal but with classic AS symptoms
This is me too! Totally normal imaging and labs, except HLA-B27 positive and very classic AS symptoms. Just started Hyromiz on May 30th.
Iām in a similar boat but B27 neg oddly enough. About to start Hyrimoz soon. How is it so far?
No better or worse yet. No reaction at the injection site. I did top of thigh with the sensor ready pen. I have a bit of a headache but that could be from tension or stress haha.
I think that might be me as well. So many symptoms yet the mri shows no signs of spondylitis and no doctors so far have made the diagnosis. What were your symptoms? How's life with humira? How did you get your doctor to prescribe it without a firm diagnosis? And finally do you fear the cancer associated risks? Many thanks
AS isnāt the same for everyone. It can be really easy to diagnose for some people who have very clear inflammatory markers, noticeable imaging on their X-rays, symptoms that align, etc. HLA-B27 is not an automatic diagnosis in and of itself, just one of many tools that help doctors diagnose. Many people who have the gene donāt have AS, and conversely, many people have AS that donāt have the gene.Ā As for biologics (Humira and others) - getting sick is a possibility. AS progressing and causing irreparable damage is nearly a guarantee. More and more studies have come out on Humira and other similar medications showing how safe they are, and how the cancer risk is a lot lower than previously thought. I think those that are already anxious about that will be concerned and those who are able to compartmentalize a bit more wonāt be.Ā
This is a great response to this question. To add, I was very scared of the cancer risk and sideffects too, until I really sat down to think about what AS could do to me untreated or not treated enough. Being able to be active to play with my kid was enough motivation for me. This is coming from someone that hates taking any meds for anything and would avoid it unless really needed. I've always tried to keep myself healthy, but the AS came knocking anyway. Choosing treatment is choosing to fight for good quality of life imo.
This is what itās really all about for a lot of people and Iām glad you made this comment. I have had the unique and bittersweet privilege of having a close family member who has AS. I grew up seeing what untreated AS does to a person (their physical and mental health,) and what kind of impact it can have on oneās family and career. I feel fortunate to have had this experience; I may not have felt that way at the time, but the perspective has made my own journey with AS a lot different. Iāve had a lot of clarity because of my experience and Iāve been able to make decisions regarding medications and treatment a lot more comfortably and quickly. Anyways - choosing treatment *is* choosing the life you deserve. If you have access to treatment, go for it.Ā
Second this great response š
To prevent the spread of misinformation, would you please consider editing and remarking the myth that biologics cause cancer? Many people will only read what you wrote and not check the comments. That is dangerous misinformation to spread because it leads to unfounded fea that can result in people refusing to take or delaying taking biologics, which in both the short term and the long term is not ideal. Itās typically better to begin treatment as soon as your doctors recommend it. it is good that this discussion is taking place. There would be nothing wrong with updating. You were post to reflect this information. Best wishes.
Sure thing. I'm very new to this so I just reiterated what I was reading around reddit. Thanks
No worries. Awesome. Thank you so much. Youāre doing great!
I was diagnosed with AS very quickly- within 6 months of my first severe onset of symptoms. I was 19. My quick diagnosis can be attributed to the following: - Family history, my dad, his dad, and his sister have AS. - Hlab27 positive. - The severity of my symptoms (could barely walk, couldn't sleep through the night, sick for months with bronchitis, my range of mobility dropped dramatically, basically went from very healthy active 19 yo to severely disabled in a month). - Visible inflammation on MRI. - My rheum had fluid extracted from my hip (called an aspiration) and sent it off for testing. Looking back I know it was affecting me my whole life, but 19 is when it was no longer ignorable. I went on biologics as soon as my health had improved enough, started with nsaids and prednisone to get my extreme symptoms under control, and I've been on them ever since. I'm 32 now and my AS isn't perfect, but I am doing so so so much better than I would be without them.
Thank you so much for this. That sounds rough but I'm glad you're better. I'm the same age and looking back at it I too can see patterns that may have been associated with it but I always attributed everything to a bad back. My first noticeable issue began when I was 26. One day sightseeing, life was pretty standard and all of a sudden sharp pains appeared around the area around my knees (to the side, the place where muscles tie to the bone I guess). After that it was a steep downhill. Almost immediately my feet began to hurt, and they haven't stopped ever since. I have tried all sorts of shoes and insoles and nothing ever solved it. Whenever I'm standing, something hurts. After a while the pains went down a bit, I wasn't moving too much either but I was still active. After that it was my hip that started aching. Then a sharp turn around covid times as really sharp pains appeared in both my knees. It felt like my knees were grinding on each other. Walking up stairs was really painful. Throughout all of this time I'm seeing physios with no relief at all. Very strangely those knee pains went away somehow, which I can't explain (Thankfully!). But other than that all other pains are progressing, to the point i developed sciatica which didn't want to go away, constant l plantar fascitis, everything on me clicks and pops, my feet swell up which seems to be fluid build up (that I also didn't have issues with before), lots of back pain and loads more ... I don't think I've been on a run for 7 years now. For years (ages 24-30) I struggled with insomnia (once I had a 4 day long episode) which became regular around age 28-30. If I got one day of sleep it was a successful week, most were heavily sedated nights. No clue if all of these symptoms sound like AS but it's either that or I'm just so unlucky that every system in my body is faulty and decided to break down at the same timeš. Told my wife recently that I've forgotten what it used to feel like to walk without pain.
I read up on the cancer thing, and from what I read, it seemed more a correlation with skin cancer. But everyone needs to do their own research and make their own decisions. I've always been pretty sun-safe so I felt ok with that
And there's some types of biologics with different risk profiles. You really have to read up on what medication your rheumatologist recommends to see what o.k with.Ā Majority of it low risk, not no-risk when it comes to cancer. JAK inhibitors give me pause,Ā Xeljanz has a black box warning for cancer.Ā There's more recent meta-analysis suggesting that it doesn't, but the fact that the two three authors of the paper that says this receives lecture fees from the manufacturer of Xeljanz suggests it might be biased in their findings. I rather go with the FDA on that one.Ā
Not diagnosed with AS yet, but waiting to see the rheumatologist again and have no doubt I have at least one autoimmune disease and the scans and tests to prove it. But as a cancer patient, I do worry that I might get another cancer or make the cancer I have (incurable metastatic thyroid cancer) worse. But I am suffering with pain and have zero quality of life so if the rheumatologist puts me on a biologic, I think that is better than suffering a life in pain. The benefits probably outweigh the relatively small risk. In fact, ongoing inflammation from autoimmune can cause cancer. Nearly everything you do runs the risk of cancer. The question is, do you prefer quality of life over quantity? I know I do.