Has anyone experienced repeated infections while taking SKYRIZI
Has anyone experienced repeated infections while on SKYRIZI? I started taking SKYRIZI in April of this year. My rheumatologist diagnosed me with psoriatic arthritis, but to be honest, I’m not sure that’s the proper diagnosis.
When I was pregnant with my second child more than 20 years ago, I developed psoriasis on my scalp. It was limited to my scalp only. Years later, I tried Otezla, and the side effects were difficult. After four months, the scalp psoriasis came back, so I stopped it.
About 10 years ago, I saw a rheumatologist who examined me and referred me to a nutritionist he recommended. He suggested a gluten and lactose-free diet might clear it up. I saw the nutritionist, followed the diet, and my scalp completely cleared up. Even my dermatologist and hair dresser were amazed. It never came back the way it once was. If I had any flare, I would only get one little spot, and I’d use a drop of betamethasone on it, maybe twice a week, until it cleared. I never had it on my body.
I saw a new rheumatologist (the one 10 years ago retired) for a diagnosis of osteoporosis. He zoned in on my lower back pain (which honestly started after having COVID and the flu back-to-back in 2022), and a swollen left pinkie, and diagnosed PsA.
I started methotrexate. I came off it after 3 months because my hair started to fall out and I developed a rash all over my neck and chest. Then I started SKYRIZI in April of this year.
Ever since, I seem to have repeated infections, despite masking (still), washing my hands constantly, NEVER touching my face, and wiping down handles and counters in my house. The first was a weird stomach bug with a 2-day fever (and more hair loss after that). Then I woke up one morning with a blocked ear and hearing loss. I went to an ENT, who sent me for a hearing test (I had lost 25% of the hearing in that ear), and told me it might be permanent. He said there might be inflammation in my ear, so he gave me steroid shot, and thankfully, the inflammation healed and my hearing was restored. But man, that was a scary thing.
Two days ago, I felt “off” with yet another stomach issue. I began running a low-grade fever (only got as high as 99.9, which my rheumatologist says isn’t a fever at all), and was fatigued to the max. The fever resolved in less than 12 hours, in part perhaps to the Tylenol and Advil I was taking. The tummy pain went away, but was back today.
And here’s the thing too: I only get relief for my back pain and pinkie pain for a month after the injection. On week 5, the pain/discomfort comes back to the point it wakes me in the night. Aspercreme and Voltaren help, as do OTC pain meds, but I have 8 weeks of this before I can take the next dose.
Has anyone else experienced this? I know people rave about SKYRIZI, but I am beginning to think it’s not worth all this trouble. I’m terrified of getting REALLY sick, I am OVER this hair loss (I’m in month 8), and it’s taking a toll on my mental health and quality of life, to be honest.
Rheumatologist says it’s not the SKYRIZI. But I swear, the last time I was sick with anything was in November 2022. I’ve had these weird infections three times in 7 months, with a good amount of breakthrough pain.
I’m new to Mayo Connect, so I appreciate any connections on this issue. Thanks so much for reading. Be well, everyone. ✨
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@becsbuddy You know, I never really stopped masking after my COVID infection in 2022, because I ended up with parosmia as a result. My ENT suggested I continue masking, as there was no guarantee that another infection would do further damage to my olfactory system, and I didn’t want to lose my sense of smell forever.
I continue to mask when I shop or go to the doctor. I don’t eat inside restaurants; I live in Florida, so I’m able to eat outdoors year-round.
I am BIG on hand washing (former teacher, lol), and keep up with vaccinations, though I wasn’t able to take this year’s covid and flu vax until this month.
I’m big on healthy food and exercise. It’s the being indoors with others that gives me much pause. I don’t mind masking at all, especially if it continues to protect others who are immunocompromised.
But I won’t lie: I feel like this has also affected my quality of life. I miss not having to worry so much.
I am definitely going to look up my absolute leukocyte count! Thank you so much for that info! I’m not even sure what that is or what it indicates 😂, but I am so curious now. I’m guessing it has to do with white blood cells.
It’s the uncertainty of everything that is causing me anxiety. But keeping my eye on that would be a good way to feel some sense of control, and perhaps even relief.
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4 Reactions@becsbuddy I forgot to reply to this part…it’s my daughter who is in college, and aside from the usual stress in submitting papers when Microsoft Word crashes, she is doing great, thank you! 😂
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1 Reaction@rashida Thank you, Rashida. It’s frustrating because it’s hard to know, isn’t it?
My rheumatologist insists these infections (with fever, no less) have nothing to do with the SKYRIZI, but all I know is that prior to starting, I haven’t been sick at all for three whole years.
This year, three infections in 7 months.
So while on one hand I understand that ok, maybe I’m just having a bad year here, on the other is the addition of the one thing that, well, causes infections. 🙃
I am doing my level best to not let the anxiety take over. I do lots of deep breathing, meditation, music, and I love journaling.
But I won’t lie: I don't want to take the next dose. I feel like I’ll be lying in wait for another illness.
Positive thoughts. That’s what I’m striving for. I hope you’re having a restful weekend, Rashida. 💛
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4 Reactions@beachesanddreams Absolute leukocyte count is what I have been told to follow. Your doctor probably wants you to follow a different one since you have a different AD!
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1 Reaction@becsbuddy I realize that now, about my doc prescribing different bloodwork, because I scoured my bloodwork going back one year, and that test isn’t on there.
Absolute lymphocytes is what is indicated on my testing, so I appreciate your clarification. All is well and good on all my absolutes, and my PCP was pleased, but told me to still mitigate, which I will.
I hope you’re having a lovely day today! 🌻
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1 Reaction2 months after starting Skyrizi for psoriasis I developed sever cellulitis, fever, chills, and exhaustion. Resolved after 14 days of Augmentin. FYI: very health 65yo with no previous hx of cellulitis. The same scenario repeated every 4-5 weeks and treated with different antibiotics for the next 8 months. Dermatology did not think Skyrizi was the cause. After seeing 3 different specialists, who all admitted they had seen nothing like it and did not have a clue, I stopped Skyrizi after 6 months. Finally saw an Infectious Disease doc who put me on chronic low dose antibiotic for 3 months as preventative while Skyrizi slowly worked its way out of my system. Now antibiotic and infection free for 6 weeks with fingers crossed.
Can't prove Skyrizi was the cause but after 6 severe infections in 8 months baffling the experts I would advise extreme caution.
Other than the AbbVie who, considering their advertising budget, I doubt would listen is there somewhere I can report this?
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3 Reactions@alfalfa52 I also have psoriasis, but I choose not to take Skyrizi due to its known side effects.
Read: https://www.skyrizi.com/psoriasis-psoriatic-arthritis/about-skyrizi/side-effects-and-safety
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3 Reactions@alfalfa52 I don’t have words for what you went through. I’m so sorry, and truly hope you are well on the road to a long, healthy recovery. Has your psoriasis been in remission?
Though I take it for psoriatic arthritis, and your story and infections are definitely more serious than mine, I am angry that no one thinks the drug caused this. Like me, you were healthy (and cellulitis-free) prior to taking SKYRIZI. Those 6 severe infections in 8 months weren’t happenstance, and it’s both ridiculous and insulting for anyone to suggest so. And I keep being told the same thing!
One thing that been irritating me is how on the SKYRIZI site, as well as a lot of medical journals/articles, there’s never a full accounting of side effects or anecdotes like these. I know that for a lot of people, it’s been a miracle drug. People are living their best lives while on it, and I think that’s wonderful. But stories always have two sides.
Last week, I spoke with my ambassador, and while she sympathized with me (I gave her a full accounting of my issues), all she really wanted to know is when I planned on ordering my next dose, and if I had a problem ordering it.
It’s almost like the drug is being, I don’t know, protected somehow. It’s weird to say, I know.
I’m at the 7 month mark myself, and honestly, my body hurts more on the inside now than before I began taking SKYRIZI.
Thank you for your reply, @alfalfa52. I am sending healing thoughts your way.
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1 Reaction@swalex Good morning! May I ask what you took instead and how you are faring?
I have psoriatic arthritis (there is no definitive test for PA, and another rheumatologist asked me if I have ever been treated for osteoarthritis, which has thrown a fair amount of doubt into the PA diagnosis for me).
Thank you for the info. You confirmed for me why I’m feeling the way I do.
I’m sort of between docs right now. When my first (and current) doc prescribed methotrexate, I asked if my hair would fall out. I told him, if it will, just prepare me. He assured me it would not; I’d be on a low dose, and he prescribed RX folic acid to make sure it didn’t happen.
I lost over 50% of my hair over 5 months. That, combined with terrible rash, and he took me off it.
He never told me I’d be on biologics for life. He said that while my immune system would be reduced, he said it wouldn’t be a problem; the drug wouldn’t suppress a large “swath” of my immune system.
Cut to me now, three weird bouts of inflammation/infections (2with fever) in 7 months.
A nurse told me to take my COVID and flu vaccines 4 weeks after my latest dose. Doc was furious, said no, you have to wait until the week before your next one.
I’m going a little out of my mind here.
I had a second opinion with another rheumatologist. She’s the one who asked if I was treated for osteoarthritis. I liked her a lot, and told her I wanted her to take me as a patient. But I emailed her through the portal last week to inquire if I even should take the next dose, and she hasn’t responded.
I’ve a fair amount of anxiety over this, as my next SKYRIZI dose is Thanksgiving Day, and I don’t know what to do.
Thank you again. Wishing you a calm and sunny morning.
@beachesanddreams I've been living with psoriasis since the age of 11, and over time, psoriatic arthritis developed as well—bringing with it a deep, persistent depression. Despite being on SSRIs for eight years, they had no noticeable effect. I eventually stopped taking them, and nothing changed, which confirmed what I had long suspected: the root cause might lie elsewhere.
For the psoriasis, I used topical corticosteroids, which provided only marginal relief. Years later, I was diagnosed with midbrain inflammation—likely caused by a viral or bacterial infection. This inflammation may be the underlying cause of the depression, with inflammatory cytokines believed to be the main drivers of the process.
In 2008, an MRI revealed a Chiari malformation. Although I underwent decompression surgery, it did not lead to any significant improvement in symptoms.
This presents a complex medical challenge, as there are very few treatments that effectively target brain inflammation. I experienced brief relief with methotrexate (MTX), but the side effects were substantial. As with many treatments, responses vary widely depending on the individual and the presence of other comorbidities.
Currently, I'm managing fairly well while taking cetirizine (an antihistamine) at night, which helps keep cytokines partially in check. However, depression resurfaced after I contracted COVID-19—possibly due to renewed brain inflammation.
Keep advocating for yourself, and if necessary, don’t hesitate to change doctors.
I found a very interesting explanation for depression and inflammation, you may like to review: https://www.youtube.com/watch
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