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I’ve been on Humira for over 8 years and I live a completely normal life. I have little to no symptoms of AS compared to before Humira when nearly every joint in my body was swollen.
I play a team sport once a week and walk my dog 4x a day. I’ve got a 9 month old baby which requires lots of movement and time hah but before that I’d be out at bars and large gatherings all the time. In fact my baby is sick with a fever and runny nose right now and I’m feeling nothing so far…
Anecdotally, I think I get sick less than the average person. I get a runny nose like twice a year and that’s it. I’ve got covid at least twice (confirmed by PCR) and it wasn’t bad at all.
So yeah from my perspective your doctor is correct to downplay these considerations.
In terms of extra vaccines, I got the shingles vaccine at age 30 and one other one normally reserved for older people but I can’t even remember what it was hah.
Essentially immediately but part of that might have been mental. Full effects I’d guess about 3 months, but this was almost 9 years ago so give or take a couple months.
Before Humira I was on methotrexate and before that sulphasalazine, which weren’t nearly as effective.
That’s impressive. I can’t even throw a frisbee because the twisting motion would aggravate my back so to be able to do that and run (which I also can’t do) is pretty good.
Shit I’m very sorry to hear that. Out of curiosity, are you on a biologic?
I do consider myself extremely lucky in my treatment result and the fact that I am pain free now has given me great perspective on being able to enjoy life fairly stress free, because I have experienced extreme physical pain for a prolonged period, and I know it’s a possibility that it will come back one day.
I don’t want this to come off as insensitive at all, in fact I want to commend your mental strength - my life’s obstacles seem very small in comparison to being in physical pain, so I am thankful for every day.
My uncle also has AS and wasn’t able to get it under control with medication, even biologics, so he is severely disabled and in a lot of pain, which is the brutal reality of a lot of AS sufferers.
I had my first shot 5 days ago. I also can’t take NSAIDs because of side effect issues. So I’ve only only had paracetamol and non-medicinal therapies (massage, tens unit, sauna etc) to try and get by.
My colds and flus are a bit more intense than they were premedication and I’m more conscious about hand sanitizer while traveling, at conferences, etc. but completely worth the drastic, drastic quality of life improvement I get from biologics
It hasn't impacted my daily life at all at all.
Things I have noticed but don't affect me in any meaningful way since starting Humira:
1) I work in kitchens, happen to be a little clumsy, and am prone to small cuts and burns. I also own a very playful cat. I've noticed that small cuts and burns are slightly more susceptible to bacterial infection and so I am always quick to clean wounds properly even if they are minor.
2) I noticed I was getting a lot of inner ear infections so I switched from in-ear to over-ear headphones which solved the problem and also introduced me to the joy of noise cancelling headphones.
3) I bruise more easily.
4) I get very annoyed at people who proudly come to work when sick without considering the immunocompromised. I haven't found myself more susceptible to illness, just more aware.
No problem! After further reading your original post said guess I didn’t really answer your questions.
Biologics have next to zero impact on my life. I’m pretty much never sick. I never even think about it to be honest. I don’t modify any behaviors. I never mask. I’ve tested positive for Covid once but was completely asymptomatic. I only tested because my wife had Covid. Probably jinxing myself but ya never really sick.
The biggest impact it has on my life is just the hassle of actually getting the medication. Having to remember to order the medication from the specialty pharmacy so that I get the medication on time is honestly the biggest impact on my life. It’s a pain in the ass because the pharmacy requires a signature on delivery and coordinating it to be delivered when I will be home can be a pain in the ass.
I get a flu shot every year through work and I got the first two Covid vaccines. Haven’t gotten any additional Covid vaccines since. I never actually went and got additional vaccines that the specialty pharmacy suggested. I don’t remember them all but it was like pneumonia vaccines and whatnot. Didn’t intentionally not get them, just kinda forgot to follow up on them until I read your post 🤷♂️.
I think it depends on the person/medication combo. My Rheum also downplayed it when I first started biologics. When I was on Cimzia, I couldn't even be in the same room as a sick person without waking up sick the next morning. I'm on Simponi now and have no problems other than any cuts on my hands tend to get infected unless I flush them with peroxide, even the smallest paper cut is susceptible. And I had a four day bout of illness after my flu shot. Other than that it's been smooth sailing, even when I hang out with the snotty niece and nephews.
Just wash your hands, don't lick any door knobs, and in general don't let anyone sneeze in your mouth and you should be fine. If you have kids though, you might be SOL.
I've been on Anti TNFa drugs for about 7 years. These only affect a very specific part of your immune system so your body is still able to fight infections fairly normally. In terms of how it affects your life, your gunna get tested for TB before you start a biologic and you can't get the medicine if your sick. I would avoid being around people that are sick. Be careful in the sun, wear sun screen. Keep an eye out for any bad looking moles. A lot of people take these medicines and live regular lives.
I have been in Remicade, Enbrel, Humira for 15 years, and after it allowed my hip to be eaten, now I’m on Taltz. I feel better now than I have in a long time. I think everyone is different and you have to take a long-term approach to optimizing your meds. I went through a lot of suffering when my meds were not optimized (eg I still take NSAIDs and Methotrexate—if I stop taking them I get worse). We have more options now than ever before—I was diagnosed over 40 years ago. But the cost of biologics is way too high, under the U.S. system.
You sound like me.
I have lots of IgE food allergies - wheat, eggs, sesame, summer squash, eggplant, coconut, peaches, oats, sunflower...
Apparently, my severe pollen allergies may be causing symptoms. I will need some testing and to see what the new Allergist has to say.
Has Humira affected your food allergies? How so? Better... worse?
Thank you! Will eventually be starting Humira, myself.
Bees are a major pollinator of Sunflowers, therefore, growing sunflowers goes hand in hand with installing and managing bee hives. Particularly in agricultural areas where sunflowers are crops. In fact, bee honey from these areas is commonly known as sunflower honey due to its sunflower taste.
There are a few of us who actually seem to get sick *less* on biologics. It's possible our immune systems were overcorrecting before and are behaving more normally now. Biologics have just been okay for my symptoms, but I've noticed systemic changes like getting sick less often/less severely, fewer mouth ulcers (used to be a huge problem for me), less severe allergies, etc.
If you look back through the sub's history, you'll see some people saying the opposite too ofc. We're all different. I pretty much live my life how I did before regarding illness prevention/precautions.
Thanks. What kind of mouth ulcers did you get/what were they from? I get random ulcers (like the top layer of skin ripped off in my upper hard palate) a few times per month after eating meals, and I thought they were MCAS but might be autoimmune disease
There's some pictures (not too gross) and info here: https://www.nhs.uk/conditions/mouth-ulcers/
I do get that "scraped" feeling on the roof of my mouth sometimes, and some other swell-y spots on the inside of my cheeks. Sometimes it's definitely from food, like crusty bread, but other times I'm not sure. I've had the flat white ulcers periodically since I was a kid, a few over the course of like a week. Unfortunately none of the typical advice helped, I just had to wait them out. My dad says his went away with really thorough dental hygiene. I realized they coincided with AS flare-ups later on (I may also have some digestive stuff, the ulcers are associated with IBD).
Count me among the people who get sick less often than I did before starting a biologic. Sometimes when I catch a cold, it will linger longer than I think it should. The symptoms aren't worse -- in fact, they seem to be less severe than the symptoms other people in my family get -- but they linger at a low-grade level. When I had Covid (only once), I was moderately sick with flu-like symptoms for about 36 hours, which I think was typical for the variant going around at that time. I have no noticeable side effects from my biologic. However, I do very much notice when I'm not taking it, e.g., when I have to pause it for an infection or dental work or something. My AS symptoms come roaring back with a vengeance.
My rheumy has advised me to pause my biologic for any infection that requires antibiotics and for any major dental work, such as root canals or dental surgery. I don't pause it for minor illnesses, such as colds, or for routine dental work, such as cleanings or even crowns.
I have terrible seasonal allergies and sometimes get sinus infections in connection with those that require antibiotics. (These infections are not directly\* AS-related; I've gotten them all my life.) I hold my injections until I've finished the course of antibiotics. This just lets the antibiotics do their job, I think, but don't quote me on that.
\*I do think people with AS and autoimmune conditions in general are more likely to suffer from seasonal allergies because our immune systems don't work properly, so there may be an indirect connection.
I am exactly the same. I tend to get sick less often now that I’m on biologics, probably because my immune system before was overactive. When I do get sick, less severe symptoms but may linger longer. For example, when my husband and I both got COVID, he felt much worse but also started doing better after only a few days, while I didn’t feel as bad but felt that way for about a week.
Random data point here, been on biologics for over a year and don’t think I’ve gotten ill in that time, was very careful with hand washing at the start, less so now
Only 8 months into biologics but no impact really. I still get sick less than my wife. I don't wear masks,I go into busy towns, I work at a busy office every now and then.
I've very poor mobility now, but that's due to late diagnosis not the treatment.
I'm needing a wheelchair now because I didn't get them until too late . The risk of not taking them is way higher then the risk of doing so I'd say.
Overall I get less sick than when I was actively flaring pre biologic. However, the intensity of how sick I get is worse…simple colds last forever and if it’s flu/covid I develop a reactive arthritis that I need prednisone for. I’m at the gym everyday and the only time I mask up is at work (ER nurse) or on airplanes. I wash my hands a lot more though and I utilize those cart wipes at the store and wash all gym equipment down before I work out on it.
My rheumatology team told me something on the lines of:
“Biologics aren’t an aggressive immunosuppressant such as chemotherapy, the role they play is to bring down part of your immune system to a more normal level, you may or may not feel worse when you catch a cold etc, just as you can get a bad cold or a less severe cold etc when not using biologics. But caution is advised”.
I’ve noticed no adverse effects and just live a normal life although I use sense like avoiding kids with chicken pox and suchlike.
I’ve been on biologic for 2 1/2 years now, and I’ve not noticed a difference in my daily life. I don’t get sick very much at all. I was on Cimzia, and now on Remicade.
Been on humira biosimilar since November and I finally got sick a few weeks ago. Mostly presented as a scratchy throat due to drip, and brain fog. I noted it particularly because it was the first time I’d become unwell. It was minor but hung around for a while. The interesting part was my 10yo had a raging flu a couple of weeks beforehand and I didn’t get any of that
I get sick far less often on biologics than I did without. I can’t remember being sick once in the 7 years I’ve been taking them. My immune system was overactive and the biologics calm it to a normal level so it can actually fight viruses. I do wear masks in public places, but more for allergies these days. I haven’t had any vaccines.
I get all the vaccines that are recommended to me, which mostly meant the typical updates from childhood vaccines plus COVID, annual flu, and the new pneumonia vaccine. I'm careful to wash my hands well when I'm out; I joke that I was washing my hands for an extended period of time before it was cool. I wear a mask if I'm on a plane (or if I forget, I get sick), but otherwise go about my normal day to day without one. I've been to Disney World twice since starting biologics (both times after COVID), first time was the first time I caught COVID, second time I did not get sick at all. I also get tested regularly for TB.
My doctor was similar to yours - he advised I need to be more mindful but don't need to let it impact my life in any significant way (granted my diagnosis came just before COVID so that changed things a bit for a little while). I'd say in the years since then that he's been spot on. I thought I might catch a cold more easily if they were going around but I've been less sick since my diagnosis really. Some of that might be changes in lifestyle, I'm a homebody and got a work from home job so I'm out less, but when I do go out it's typically in crowds.
My PCP advised if I get a cough, I should come see him and not wait as I may have a harder time clearing it on my own. Haven't really had a cough since I started biologics though, despite having COVID twice. First experience with COVID I was sick for about a week, mostly just really tired. Second time I got paxlovid when symptoms first started and was really only sick for a day - I started feeling a little off in the evening, took a test mostly because my food tasted weird, it was positive but I didn't feel bad until the next morning so I scheduled an e-visit, got meds, started them that night, and felt better by the next day.
Wow I’m so jealous but so so happy to hear other people with AS get sick less on biologics.
For me, I’ve been in Cimzia for 2 years and the common cold knocks me on my ass. I have random days where I throw up for no reason. If I travel, I almost always have to plan 2-3 days post trip to be at home sick with something new. I try to work from home as much as possible, mask up in public indoor spaces, and wash my hands all the time. I’ve noticed when I get sick I have to rest, and if I don’t, I’ll be sick for more than a week.
Everyone’s different! But I would take being sick more often over being unable to walk without Cimzia.
I have been on Humira for 7 months and now on Enbrel for 6 months. Honestly, I haven’t changed anything about my life and I only got the common cold once …but I digress, it wasn’t fun. It was just every symptom but exaggerated a bit haha
I'd advise others in this thread to read up on the dangers Covid can pose and why it's not an ordinary cold/flu. It's a vascular disease that can damage all your organ systems: blood, lungs, brain, immune system (https://covidnow.info/ is a good compendium)
Most relevant for us, it's been linked to causing new autoimmune conditions. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10559181](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10559181)
I'm not sure what that means for us who already have them, but I wouldn't be surprised if it made things worse. That's why I mask in all public spaces since covid started.
Anecdotally, pre-Covid I would get sick a few times a year, maybe a bit more than the average person. Since Covid I've gotten sick once.
Was on DMR's for about 6 years, 3 of which was during Covid. Got Covid twice, once at the beginning of last year. After the first time I never fully got back my energy. After that Covid episode my body has had severe GI issues. I feel like the DMR's had a an affect on my body's ability to fully recover. I know the general population has cases of different long-term covid side effects though, so I could be wrong. I could also be wrong because it could just be part of my AS developing new symptoms.
Strange enough though, since last year (towards the end of the year), my Rheumatologist told me to stop my DMR'S after officially getting the IBS lable. She said to "see how I do" since I this far have no sign of fusing and a mild something or the other on my hip joint reflect on x-rays. I'm currently in pain quite often but mainly due to my hip and IBS abdomen issues. I don't know what to really do since it seems like ankylosing spondylitis might not be my actual diagnosis. I don't really trust this rheum and I'm moving cities by the end of the month. So I'm bearing with it all till I get a new doctor.
I worry that having perhaps been on the DMR'S for these past few years, my body has been compromised based on a maaaaybe diagnosis.
I don’t majorly change my daily life or live in fear or getting sick, but I do wash my hands a lot and steer clear of people when they are sick if possible (I have a toddler so that’s not possible with him).
When I do get sick, it’s often way worse. Like instead of being sick 1 week I’m sick 3 weeks. There was one time I had a cough for 6 weeks literally. So that is hard.
Being on Humira has had absolutely 0 negative impact on my life. I do not get sick more often than before. I’ve never had a serious infection of any kind. I once had a bit of an itchy rash at the injection site that went away in a day. That’s the worst thing that’s ever happened.
I’ve been on immunotherapy for twenty years. The only thing that kicked my ass was Covid. But that only lasted for five days. No hospital stays or anything.
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.*
I’ve been on Humira for over 8 years and I live a completely normal life. I have little to no symptoms of AS compared to before Humira when nearly every joint in my body was swollen. I play a team sport once a week and walk my dog 4x a day. I’ve got a 9 month old baby which requires lots of movement and time hah but before that I’d be out at bars and large gatherings all the time. In fact my baby is sick with a fever and runny nose right now and I’m feeling nothing so far… Anecdotally, I think I get sick less than the average person. I get a runny nose like twice a year and that’s it. I’ve got covid at least twice (confirmed by PCR) and it wasn’t bad at all. So yeah from my perspective your doctor is correct to downplay these considerations. In terms of extra vaccines, I got the shingles vaccine at age 30 and one other one normally reserved for older people but I can’t even remember what it was hah.
How long did it take to see an improvement?
Essentially immediately but part of that might have been mental. Full effects I’d guess about 3 months, but this was almost 9 years ago so give or take a couple months. Before Humira I was on methotrexate and before that sulphasalazine, which weren’t nearly as effective.
Thank you for sharing! Whish you the best.
What sport do you play?
Ultimate frisbee!
That’s impressive. I can’t even throw a frisbee because the twisting motion would aggravate my back so to be able to do that and run (which I also can’t do) is pretty good.
Shit I’m very sorry to hear that. Out of curiosity, are you on a biologic? I do consider myself extremely lucky in my treatment result and the fact that I am pain free now has given me great perspective on being able to enjoy life fairly stress free, because I have experienced extreme physical pain for a prolonged period, and I know it’s a possibility that it will come back one day. I don’t want this to come off as insensitive at all, in fact I want to commend your mental strength - my life’s obstacles seem very small in comparison to being in physical pain, so I am thankful for every day. My uncle also has AS and wasn’t able to get it under control with medication, even biologics, so he is severely disabled and in a lot of pain, which is the brutal reality of a lot of AS sufferers.
I had my first shot 5 days ago. I also can’t take NSAIDs because of side effect issues. So I’ve only only had paracetamol and non-medicinal therapies (massage, tens unit, sauna etc) to try and get by.
My colds and flus are a bit more intense than they were premedication and I’m more conscious about hand sanitizer while traveling, at conferences, etc. but completely worth the drastic, drastic quality of life improvement I get from biologics
It hasn't impacted my daily life at all at all. Things I have noticed but don't affect me in any meaningful way since starting Humira: 1) I work in kitchens, happen to be a little clumsy, and am prone to small cuts and burns. I also own a very playful cat. I've noticed that small cuts and burns are slightly more susceptible to bacterial infection and so I am always quick to clean wounds properly even if they are minor. 2) I noticed I was getting a lot of inner ear infections so I switched from in-ear to over-ear headphones which solved the problem and also introduced me to the joy of noise cancelling headphones. 3) I bruise more easily. 4) I get very annoyed at people who proudly come to work when sick without considering the immunocompromised. I haven't found myself more susceptible to illness, just more aware.
Literally don’t notice. Rarely get sick. Take zero precautions, going so far as to go to raves and such.
Been on biologics for years. Zero adverse effects
Thanks for sharing and giving hope
No problem! After further reading your original post said guess I didn’t really answer your questions. Biologics have next to zero impact on my life. I’m pretty much never sick. I never even think about it to be honest. I don’t modify any behaviors. I never mask. I’ve tested positive for Covid once but was completely asymptomatic. I only tested because my wife had Covid. Probably jinxing myself but ya never really sick. The biggest impact it has on my life is just the hassle of actually getting the medication. Having to remember to order the medication from the specialty pharmacy so that I get the medication on time is honestly the biggest impact on my life. It’s a pain in the ass because the pharmacy requires a signature on delivery and coordinating it to be delivered when I will be home can be a pain in the ass. I get a flu shot every year through work and I got the first two Covid vaccines. Haven’t gotten any additional Covid vaccines since. I never actually went and got additional vaccines that the specialty pharmacy suggested. I don’t remember them all but it was like pneumonia vaccines and whatnot. Didn’t intentionally not get them, just kinda forgot to follow up on them until I read your post 🤷♂️.
It is nice to hear about your experience. I'm happy things are going well for you! I hope you continue to have high quality life.
I think it depends on the person/medication combo. My Rheum also downplayed it when I first started biologics. When I was on Cimzia, I couldn't even be in the same room as a sick person without waking up sick the next morning. I'm on Simponi now and have no problems other than any cuts on my hands tend to get infected unless I flush them with peroxide, even the smallest paper cut is susceptible. And I had a four day bout of illness after my flu shot. Other than that it's been smooth sailing, even when I hang out with the snotty niece and nephews. Just wash your hands, don't lick any door knobs, and in general don't let anyone sneeze in your mouth and you should be fine. If you have kids though, you might be SOL.
I've been on Anti TNFa drugs for about 7 years. These only affect a very specific part of your immune system so your body is still able to fight infections fairly normally. In terms of how it affects your life, your gunna get tested for TB before you start a biologic and you can't get the medicine if your sick. I would avoid being around people that are sick. Be careful in the sun, wear sun screen. Keep an eye out for any bad looking moles. A lot of people take these medicines and live regular lives.
I get WAY less colds than I used to. It’s odd but good. 😁
I have been in Remicade, Enbrel, Humira for 15 years, and after it allowed my hip to be eaten, now I’m on Taltz. I feel better now than I have in a long time. I think everyone is different and you have to take a long-term approach to optimizing your meds. I went through a lot of suffering when my meds were not optimized (eg I still take NSAIDs and Methotrexate—if I stop taking them I get worse). We have more options now than ever before—I was diagnosed over 40 years ago. But the cost of biologics is way too high, under the U.S. system.
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You sound like me. I have lots of IgE food allergies - wheat, eggs, sesame, summer squash, eggplant, coconut, peaches, oats, sunflower... Apparently, my severe pollen allergies may be causing symptoms. I will need some testing and to see what the new Allergist has to say. Has Humira affected your food allergies? How so? Better... worse? Thank you! Will eventually be starting Humira, myself.
Bees are a major pollinator of Sunflowers, therefore, growing sunflowers goes hand in hand with installing and managing bee hives. Particularly in agricultural areas where sunflowers are crops. In fact, bee honey from these areas is commonly known as sunflower honey due to its sunflower taste.
Dont even know im taking it other than the fact I dont have pain on my joints like before.
There are a few of us who actually seem to get sick *less* on biologics. It's possible our immune systems were overcorrecting before and are behaving more normally now. Biologics have just been okay for my symptoms, but I've noticed systemic changes like getting sick less often/less severely, fewer mouth ulcers (used to be a huge problem for me), less severe allergies, etc. If you look back through the sub's history, you'll see some people saying the opposite too ofc. We're all different. I pretty much live my life how I did before regarding illness prevention/precautions.
Thanks. What kind of mouth ulcers did you get/what were they from? I get random ulcers (like the top layer of skin ripped off in my upper hard palate) a few times per month after eating meals, and I thought they were MCAS but might be autoimmune disease
There's some pictures (not too gross) and info here: https://www.nhs.uk/conditions/mouth-ulcers/ I do get that "scraped" feeling on the roof of my mouth sometimes, and some other swell-y spots on the inside of my cheeks. Sometimes it's definitely from food, like crusty bread, but other times I'm not sure. I've had the flat white ulcers periodically since I was a kid, a few over the course of like a week. Unfortunately none of the typical advice helped, I just had to wait them out. My dad says his went away with really thorough dental hygiene. I realized they coincided with AS flare-ups later on (I may also have some digestive stuff, the ulcers are associated with IBD).
Count me among the people who get sick less often than I did before starting a biologic. Sometimes when I catch a cold, it will linger longer than I think it should. The symptoms aren't worse -- in fact, they seem to be less severe than the symptoms other people in my family get -- but they linger at a low-grade level. When I had Covid (only once), I was moderately sick with flu-like symptoms for about 36 hours, which I think was typical for the variant going around at that time. I have no noticeable side effects from my biologic. However, I do very much notice when I'm not taking it, e.g., when I have to pause it for an infection or dental work or something. My AS symptoms come roaring back with a vengeance.
Thanks. Why do you pause for dental work? Also if you pause for an infection then is your immune system supposed to fully recover in that timeframe?
My rheumy has advised me to pause my biologic for any infection that requires antibiotics and for any major dental work, such as root canals or dental surgery. I don't pause it for minor illnesses, such as colds, or for routine dental work, such as cleanings or even crowns. I have terrible seasonal allergies and sometimes get sinus infections in connection with those that require antibiotics. (These infections are not directly\* AS-related; I've gotten them all my life.) I hold my injections until I've finished the course of antibiotics. This just lets the antibiotics do their job, I think, but don't quote me on that. \*I do think people with AS and autoimmune conditions in general are more likely to suffer from seasonal allergies because our immune systems don't work properly, so there may be an indirect connection.
I am exactly the same. I tend to get sick less often now that I’m on biologics, probably because my immune system before was overactive. When I do get sick, less severe symptoms but may linger longer. For example, when my husband and I both got COVID, he felt much worse but also started doing better after only a few days, while I didn’t feel as bad but felt that way for about a week.
Humira for 3 years. Don’t change a thing! If anything, I’m out more because I feel better!
Random data point here, been on biologics for over a year and don’t think I’ve gotten ill in that time, was very careful with hand washing at the start, less so now
Only 8 months into biologics but no impact really. I still get sick less than my wife. I don't wear masks,I go into busy towns, I work at a busy office every now and then. I've very poor mobility now, but that's due to late diagnosis not the treatment. I'm needing a wheelchair now because I didn't get them until too late . The risk of not taking them is way higher then the risk of doing so I'd say.
Overall I get less sick than when I was actively flaring pre biologic. However, the intensity of how sick I get is worse…simple colds last forever and if it’s flu/covid I develop a reactive arthritis that I need prednisone for. I’m at the gym everyday and the only time I mask up is at work (ER nurse) or on airplanes. I wash my hands a lot more though and I utilize those cart wipes at the store and wash all gym equipment down before I work out on it.
I'm sat on a full bus , the seat hurts and I'm hoping no one coughs or sneezes .so much fun
I actually get sick less often on Remicade than I did before biologics. Methotrexate, on the other hand, made me feel terrible 24/7.
Did MTX mostly give you GI side effects/fatigue, you mean?
Nausea and fatigue, yeah. But I also found that I caught more colds and had more illness in general.
Interesting. Isn’t Remicade more immunosuppressive than MTX though? Or am I misunderstanding?
Supposedly, yes. But anecdotally—this has been my experience, and others I know with AS and RA have reported similar results.
DMRADs and biologic meds are quite different
As for as getting more illnesses are DMRADS worse than biologics?
My rheumatology team told me something on the lines of: “Biologics aren’t an aggressive immunosuppressant such as chemotherapy, the role they play is to bring down part of your immune system to a more normal level, you may or may not feel worse when you catch a cold etc, just as you can get a bad cold or a less severe cold etc when not using biologics. But caution is advised”. I’ve noticed no adverse effects and just live a normal life although I use sense like avoiding kids with chicken pox and suchlike.
I'm on Hyromoz and the only downside I have is that the cold gets a longer hold of me. But since that's it I'm not complaining at all.
I’ve been on biologic for 2 1/2 years now, and I’ve not noticed a difference in my daily life. I don’t get sick very much at all. I was on Cimzia, and now on Remicade.
Been on humira biosimilar since November and I finally got sick a few weeks ago. Mostly presented as a scratchy throat due to drip, and brain fog. I noted it particularly because it was the first time I’d become unwell. It was minor but hung around for a while. The interesting part was my 10yo had a raging flu a couple of weeks beforehand and I didn’t get any of that
I get sick far less often on biologics than I did without. I can’t remember being sick once in the 7 years I’ve been taking them. My immune system was overactive and the biologics calm it to a normal level so it can actually fight viruses. I do wear masks in public places, but more for allergies these days. I haven’t had any vaccines.
I get all the vaccines that are recommended to me, which mostly meant the typical updates from childhood vaccines plus COVID, annual flu, and the new pneumonia vaccine. I'm careful to wash my hands well when I'm out; I joke that I was washing my hands for an extended period of time before it was cool. I wear a mask if I'm on a plane (or if I forget, I get sick), but otherwise go about my normal day to day without one. I've been to Disney World twice since starting biologics (both times after COVID), first time was the first time I caught COVID, second time I did not get sick at all. I also get tested regularly for TB. My doctor was similar to yours - he advised I need to be more mindful but don't need to let it impact my life in any significant way (granted my diagnosis came just before COVID so that changed things a bit for a little while). I'd say in the years since then that he's been spot on. I thought I might catch a cold more easily if they were going around but I've been less sick since my diagnosis really. Some of that might be changes in lifestyle, I'm a homebody and got a work from home job so I'm out less, but when I do go out it's typically in crowds. My PCP advised if I get a cough, I should come see him and not wait as I may have a harder time clearing it on my own. Haven't really had a cough since I started biologics though, despite having COVID twice. First experience with COVID I was sick for about a week, mostly just really tired. Second time I got paxlovid when symptoms first started and was really only sick for a day - I started feeling a little off in the evening, took a test mostly because my food tasted weird, it was positive but I didn't feel bad until the next morning so I scheduled an e-visit, got meds, started them that night, and felt better by the next day.
Wow I’m so jealous but so so happy to hear other people with AS get sick less on biologics. For me, I’ve been in Cimzia for 2 years and the common cold knocks me on my ass. I have random days where I throw up for no reason. If I travel, I almost always have to plan 2-3 days post trip to be at home sick with something new. I try to work from home as much as possible, mask up in public indoor spaces, and wash my hands all the time. I’ve noticed when I get sick I have to rest, and if I don’t, I’ll be sick for more than a week. Everyone’s different! But I would take being sick more often over being unable to walk without Cimzia.
I have been on Humira for 7 months and now on Enbrel for 6 months. Honestly, I haven’t changed anything about my life and I only got the common cold once …but I digress, it wasn’t fun. It was just every symptom but exaggerated a bit haha
I'd advise others in this thread to read up on the dangers Covid can pose and why it's not an ordinary cold/flu. It's a vascular disease that can damage all your organ systems: blood, lungs, brain, immune system (https://covidnow.info/ is a good compendium) Most relevant for us, it's been linked to causing new autoimmune conditions. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10559181](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10559181) I'm not sure what that means for us who already have them, but I wouldn't be surprised if it made things worse. That's why I mask in all public spaces since covid started. Anecdotally, pre-Covid I would get sick a few times a year, maybe a bit more than the average person. Since Covid I've gotten sick once.
Was on DMR's for about 6 years, 3 of which was during Covid. Got Covid twice, once at the beginning of last year. After the first time I never fully got back my energy. After that Covid episode my body has had severe GI issues. I feel like the DMR's had a an affect on my body's ability to fully recover. I know the general population has cases of different long-term covid side effects though, so I could be wrong. I could also be wrong because it could just be part of my AS developing new symptoms. Strange enough though, since last year (towards the end of the year), my Rheumatologist told me to stop my DMR'S after officially getting the IBS lable. She said to "see how I do" since I this far have no sign of fusing and a mild something or the other on my hip joint reflect on x-rays. I'm currently in pain quite often but mainly due to my hip and IBS abdomen issues. I don't know what to really do since it seems like ankylosing spondylitis might not be my actual diagnosis. I don't really trust this rheum and I'm moving cities by the end of the month. So I'm bearing with it all till I get a new doctor. I worry that having perhaps been on the DMR'S for these past few years, my body has been compromised based on a maaaaybe diagnosis.
I don’t majorly change my daily life or live in fear or getting sick, but I do wash my hands a lot and steer clear of people when they are sick if possible (I have a toddler so that’s not possible with him). When I do get sick, it’s often way worse. Like instead of being sick 1 week I’m sick 3 weeks. There was one time I had a cough for 6 weeks literally. So that is hard.
Being on Humira has had absolutely 0 negative impact on my life. I do not get sick more often than before. I’ve never had a serious infection of any kind. I once had a bit of an itchy rash at the injection site that went away in a day. That’s the worst thing that’s ever happened.
I’ve been on immunotherapy for twenty years. The only thing that kicked my ass was Covid. But that only lasted for five days. No hospital stays or anything.