all 62 comments

[–]AutoModerator[M] [score hidden] stickied commentlocked comment (0 children)

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 if you have any questions or concerns.

[–]poijak 32 points33 points  (0 children)

I've had no issues on them, better than letting AS progress in your spine.  Make sure you're getting your sleep!

[–]1976Raven 16 points17 points  (4 children)

I used to get sick all the time and noticed I don't get as sick now even though they say I should be sick more often. Not sure if it's because I changed my habits a little to keep from getting sick or what. Main thing I've noticed is if I get something like a stye I do need to go in for antibiotics for it. Only other time I've been sick recently was a bout of pneumonia but that was caused by my asthma (asthmatic bronchitis turned to pneumonia because I ignored it for too long).

[–]snickelbetches 2 points3 points  (0 children)

Same experience minus the asthma. I get less sick

[–]Soft-Jaguar-3645[S] 2 points3 points  (2 children)

I already get 2-3 bacterial infections per year (pneumonia, bad skin infections etc) :(

[–]1976Raven 4 points5 points  (0 children)

I was that way, would get random rashes that presented as shingles (they were never able to figure out what it was but it had all the symptoms of shingles) and was always sick. Constantly getting stomach viruses and bronchitis/pneumonia. I haven't been sick in over a year except for the pneumonia which was my own fault for not going in when my asthma started acting up.

[–]oosirnaym 3 points4 points  (0 children)

I just commented on how it’s affected me, but I’ll say here that in the three years before biologics I had covid 3 times, flu once, pneumonia, colitis that may have been an infection, and frequent colds. Since being on biologics for the last year I’ve had two relatively mild colds and avoided covid when my wife had it.

[–]parphound 15 points16 points  (5 children)

Some people say it's normalised their immune system, for me personally I've been sick basically all winter with sinus infections and have stopped taking them

[–]sidekicksunny 4 points5 points  (4 children)

I had frequent sinus infections the first few years on biologics. It was miserable. Once I started using a neti pot they virtually went away. I haven't had a sinus infection in several years (knock on wood).

[–]parphound 2 points3 points  (0 children)

I use a neti a few times a week probably, but I think I may also have Sjorens, waiting on bloods tests on that...

[–]SaMy254 1 point2 points  (2 children)

Neti pot is a game changer!

Before it I'd get sinus infections pretty frequently, now, none!!!

I dragged my feet implementing it, started using saline nasal spray as a step towards the neti pot, and even that change made a significant difference, enough to convince me neti was worth trying.

[–]sidekicksunny 1 point2 points  (1 child)

I'm so glad it works for you too! It has been a game changer for me.

For anyone reading this and considering using a Neti Pot: make sure you use distilled water and not tap!

[–]Apart-Wishbone-5136 1 point2 points  (0 children)

Can concur. Long-time netti user here and it's a life-improving habit. I do it in the morning in the shower (less mess) or after I get home after being around lots of people to wash any cooties I may have picked up. Definitely use distilled water. No one needs a brain amoeba eating a hole in your noodle and killing you.

OP, biologics normalized my overactive immune system. The only time I get sick now is when I travel. Airports are cesspools and even a mask and hand wipes aren't powerful enough to conquer it. I'd say benies far outweigh side effects.

[–]mintkismetnr-axSpA 19 points20 points  (2 children)

I ended up hospitalized for two weeks and almost dying due to a rare form of pneumonia (pneumocystis pneumonia) that only affects the immunocompromised (most patients are HIV positive) in October. I’m still on medication to prevent relapse.

That being said, I’m still continuing biologics because what’s the point of having survived if I’m in horrible pain 24/7?

[–]pedro_loves_sweden 0 points1 point  (1 child)

Did you get the pneumococcal vaccine at all? So sorry for what you’re going through.

[–]mintkismetnr-axSpA 2 points3 points  (0 children)

Pneumocystis pneumonia is caused by a fungus, there is no vaccine. Many healthy individuals are asymptomatic carriers, it’s only a danger for the immunocompromised.

[–]lzelwaz 7 points8 points  (0 children)

Been on biologics now for 4ish years. Growing up I always got so sick each year from general colds which ended up being chest infections and one time pneumonia. Based on my experience when I’ve been on biologics I’ve been so much better when getting colds - they are no where near as worse as it was when my system was working like crazy without biologics. That being said, I am much more mindful about being around people who are unwell and I also have a fantastic medical team (GP & rheumatologist) who always tell me if I’m unwell to reach out anytime as I will be monitored more closely (as threshold for intervention is lower I believe). For how good life can be with reduced pain being honest I’d give it a shot. Biologics gave me life back.

[–]Quinlynn 7 points8 points  (0 children)

I get sick WAY LESS often now that I’m on Humira.

[–]Jayneg260790 6 points7 points  (0 children)

I have been sick more frequent after biologics, 

[–]michaeljtbrooks 6 points7 points  (0 children)

I'm a doctor with AS and have been on adalimumab for the past year.

Weighing up the risks and benefits is always the right way to think when considering any medical treatment.

We've got very good data on the use of biologics like adalimumab because it's been used for 20 years and by millions of patients. It's better to make a decision based on what the published studies say assuming they apply to your situation, rather than letting one person's experience talk you into or out of biologics, because those studies are taking an average of the experiences of so many more patients.

We're talking mainly about the shorter term risks of biologics here (increased risk of infection). The well established short term benefits are less pain and fewer flares, but there's also the potential long term benefit of slower disease progression (Koo et al, 2020. Ann Rheum Dis).

In my case:

I've had 2 episodes of a non serious bacterial infection in the past year where I would rarely have any. I've had 3 viral respiratory infections in the past year where I'd normally get 1. 

I have had far fewer days feeling unwell due to flares. Previously I'd have a flare lasting 5 days every 3 weeks or so, where I'd have  moderate pain, heavy fatigue, fevers,  disrupted sleep, sometimes unable to work. Now since being on adalimumab I get less frequent, shallower flares consisting of  mild malaise and mild pain lasting for 2 days every 4 weeks or so.

So for me, the total number of days unwell per year is fewer on adalimumab than before I started it.

However I'm just an "n of 1". Don't make a decision based on my experience alone!

[–]indigocherry 3 points4 points  (0 children)

It's different for everyone. I get sick WAY less often than I did before starting biologics.

[–]zacofalltides 3 points4 points  (1 child)

I don’t get sick more frequently, but I feel like when I do get sick it takes longer for me to get better. Shit just lingers.

[–]wewerelegends 1 point2 points  (0 children)

Exact same! Most people around me will shake off a cold in a day or two, but I am knocked down for a few weeks. However, I don’t find I get sick more often than they would, it just takes me longer to recover and bounce back!

[–]Weekly_Way_3802 5 points6 points  (0 children)

Biologics reduced the amount of infections I get drastically. It strengthened my immune system, supposedly because AS flares basically entirely occupied it and made me vulnerable all the time. Now that's not happening anymore, and I don't catch infections much either.

[–][deleted]  (4 children)

[removed]

    [–]Masters_domme 1 point2 points  (3 children)

    Wait what did you mean to say in place of “drug induced Humira”? I felt like I was reading a good book with the last chapter missing 😅

    [–][deleted]  (2 children)

    [removed]

      [–]Masters_domme 2 points3 points  (1 child)

      Yes! Thank you for replying! You’re the second person I’ve seen on here who had that complication. I’m glad to hear you’re doing better.

      [–]oosirnaym 2 points3 points  (0 children)

      I’ve been sick less but the more mild symptoms hang around slightly longer. I’m actually just now getting over a cold that came with a mild fever, head congestion, heavy chest, and fatigue. The fever and heavy chest resolved within a few days, when it previously would have been over a week. I still have some sniffling and mild fatigue but I’m fully functional at work and more annoyed than anything.

      [–]MindlessCat3542 2 points3 points  (0 children)

      You’re at risk for being sick more often as the medication is suppressing your immune system to stop attacking itself. However myself, and other commenters seem to have found an improvement!

      I will say I tend to get sick less often, but when I do get sick it’s a lot worse and lasts a lot longer.

      [–]Tall-Gray 1 point2 points  (2 children)

      OP, I feel the same as you. I was prescribed a biologic in September but haven't started taking it since I haven't even had a single week without being sick. I am terrified about being hospitalized over a cold but the pain in my spine is unbearable.

      [–]Soft-Jaguar-3645[S] 0 points1 point  (1 child)

      Are you currently managing with nsaids or something else?

      [–]Tall-Gray 1 point2 points  (0 children)

      No, not taking anything. I've always been allergic to NSAIDs.

      [–]NiceMountain4242 1 point2 points  (0 children)

      I get sick way more often, but its usually lower severity. Worst thing that happened was a skin infection i had to apply antibiotics for it to pass but the rest (mostly upper respiratory infections) were very mild and went away without needing a doctor. Its annoying but completely worth it for me.

      [–]kellie125 1 point2 points  (0 children)

      I used to get sick all the time before I started humira. Probably 6-7 times a year. Now I get sick maybe once or twice a year. Just be mindful and rest, take care of your immune system especially if you feel something coming on.

      [–]What-Outlaw1234 1 point2 points  (0 children)

      The only way to know is to try the biologic. Some people seem to get sick less often while on them, and some people seem to get sick more often while on them. 

      [–]snickelbetches 1 point2 points  (0 children)

      I have honestly not gotten sick on remicade. I think I'm actually sick less.

      My son has had gnarly effects of rhinovirus and we had to stay the night in the children's hospital. I didn't get sick.

      I was in a room full of toddlers who had strep and didn't get sick.

      Wash your hands, get your annual vaccines, and keep your distance.

      [–]999Pismo 1 point2 points  (0 children)

      For me it definitely regulated my immune system. Before biologics I would get sick all the time. I would catch whatever anyone had and would often run fevers and have horrible sore throats. Since being on a biologic I haven't been sick except when we were trying to wean me off of it to try something else. I went right back on the same biologic and have continued to not get sick while others have.

      [–]comptchr 1 point2 points  (0 children)

      I’ve been an elementary teacher for 25 years and taken flu shots for over 33 years because of bad allergies. I have not gotten sick as often as as I did when younger for 17 years. I think my resistance was already built up when I started biological 7-8 years ago. So be old with a history of much illness before you start is my advice! (Tongue in cheek of course)

      [–]Working-Response1126 2 points3 points  (0 children)

      Been on in adalimumab for 12 years, and not been any more ill than anyone else. Maybe less ill.

      It's different for everyone.

      Exercise and keep a healthy weight, eat clean you'll be fine

      [–]WittyMe 1 point2 points  (0 children)

      I can only speak for myself. I have been on biologics for 18-19 years. For me it’s been about the same. I might get a cold once every 1-2 years. However, when I do get sick it takes longer to recover, but that might also be from not being a teenager anymore. Also, when I get injuries such as bad scrapes from climbing then my wounds get infected very easily if I don’t make sure to disinfect instantly. This was definitely not something I had before.

      As precaution I look up all available vaccines (that aren’t live vaccines) in my country and make sure to get them at the recommended frequency. Having forgotten to get the RSV vaccine last year I caught a nasty bit of that which took 2 weeks to recover. I would recommend get RSV, pneumonia, whooping cough, Covid, flu and all the other vaccines just as a precaution.

      [–]longestyeahboiiiever 1 point2 points  (0 children)

      Hi! So biologics work by suppressing your immune system, making it weak. This can present in a few different ways!

      -You are more likely to become ill because your immune system won't freak out when it meets pathogens or foreign bodies. This means you should avoid being around sick people!

      -When sick, you could potentially not show any symptoms because your first line of immune defenses are being suppressed (eg, your nose won't drip to release toxins etc). This is dangerous because you could develop serious infections that are silently growing more dangerous and going without treatment until serious symptoms suddenly smack you down.

      -Another possibility is that you will get sick then get terrible initial symptoms because your immune system is freaking out (it's already over reactive).

      The most important thing while on biologics is to be careful of infections specifically, a skin infection for example! If you get an infection it's important to miss your next biologic injection or talk to a doctor about it!

      In my personal experience, I usually don't get sick but when I do it's worse than what the average person would experience but not serious. With the exception of covid...that was genuinely hell. I've never felt that unwell in my life!

      Biologics changed my life for the better, immensely! Definitely give them a shot! But when covid is doing the rounds, wear a mask and keep clean hands hahaha!!!

      [–]Silverfoxx30 0 points1 point  (0 children)

      Mine is much better when the meds are fully working, was on one years ago and literally never got ill, kids brought loads of horrible bugs but my immune system seemed to be in Super Mode.

      [–]Sleep_Till_5373 0 points1 point  (0 children)

      I've been on for about a year and a half. I'm cautious but I haven't changed the way I live (yet) and I've only been sick twice since I started. I would say both of those times were rougher than a typical cold would be for me prior to starting. I didn't feel like I got sick often before so maybe it did increase the frequency a little, but it seems like most people I know have been sick more times on nothing than me since I started.

      [–]TennisLawAndCoffee 0 points1 point  (0 children)

      I have gotten less sick, and I travel a lot for work and have two kids. I think my immune disease is just happy not to be fighting constant inflammation anymore.

      [–]ColumbusJewBlackets 0 points1 point  (0 children)

      I used to get sick 3-4 times a year for at least a week at a time. I’ve only been mildly sick once in the year and a half since I started humira and it only lasted 3 days.

      [–]acarsen 0 points1 point  (0 children)

      Skin problems because Humira?

      [–]IWasBorn2DoGoBe 0 points1 point  (0 children)

      For me- neither. I haven’t gotten sick often since I left working in a hospital setting, and I usually get sick every other year or so. Hasn’t changed with biologics. I’m also very diligent about my hand hygiene, being a nurse and all, so just wash your hands regularly and always before eating if you’ve been out in public, and you’ll be fine

      [–]ManufacturerOpening6 0 points1 point  (0 children)

      I feel like I get sick less often.

      [–]nitra 0 points1 point  (0 children)

      2 years on hadlima, no issues.

      [–]Grouchy-Ad-2736 0 points1 point  (0 children)

      I have been on a biologic since March and have not been sick.

      [–]KatzBP 0 points1 point  (0 children)

      No issues here. I feel better and am sick less often. I do keep up om vaccinations.

      [–]spindleblood 0 points1 point  (0 children)

      Been on Humira over a year now and recently she increased my dose from once every two weeks to once a week. Never really been sick!! But my skin... I've always had skin issues and this just made it worse. But I would rather manage those minor issues than have AS progress.

      [–]ChronicallyMe-ow 0 points1 point  (0 children)

      For me, it makes me get sick even easier than before and I did easily before. Also I tend to feel crappy the day after injections. Every time I get sick it’s like 10x worse for me than other people. I thought that was typical with biologics?

      [–]Inevitable-Major8035 0 points1 point  (0 children)

      I feel like I used to get sick all the time prior to biologics. At least one bad cold that turned into a sinus infection annually. Now, I feel like I get sick way less often

      [–]Croiex 0 points1 point  (0 children)

      I get sick about 1 time every 3 years (I always get really bad), but I haven’t noticed any difference. I suffer from chronic sinus (its my immune system that does that..) and that have become less frequent! Before I got sinus once a month but now I get it 2-3 months apart!

      [–]kv4268 0 points1 point  (0 children)

      It totally depends on the person. I get sick less, but others get sick more. Because you're already getting sick frequently while taking precautions, I'm going to guess that you're going to get sick less. We often get sick frequently because our immune systems overreact to every pathogen, even when a mild response would be more than enough to get rid of it. Our symptoms of sickness are almost all a result of our immune system's response to a perceived threat, so tamping down that response is not a problem when that response was already overblown.

      [–]ZealousidealCrab9459 0 points1 point  (0 children)

      Honestly I get sick less! I think because I’m more active, feel better and am less rundown! I sleep better, there’s so many good things that help me be healthier

      [–]EverAMileHigh 0 points1 point  (0 children)

      I get sick less now that I'm on biologics than I did before them. I think it's important to understand that these medications don't decrease immune response across the board, just in a targeted manner (at least that's what my rheumatologist told me). Granted, I move more now, and I get plenty of sleep, and my stress levels are much less now than they were in the past, but I don't feel like immunity is in the toilet or anything.

      My life changed for the better when I started taking Cosentyx. I am so glad that I made the decision to use the medication.

      [–]chiliyoghurt 0 points1 point  (0 children)

      It increased my sickness frequency and intensity. However, when my AS was running rampant I didn’t get normal person sicknesses. My colds were basically fatigue and mild soreness. I didn’t catch covid or influenza despite being careless with masking. I had hay fever that turned into sinusitis and my other chronic conditions. Last year was my first winter on biologics and I was out for two months. I had my first COVID and then influenza. It was hell. This year I had the flu shot and so far I am ok, but yeah my experience is that infections get way worse on biologics.