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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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@beachesanddreams Hi, again! Thanks for all the info on gluten—I keep planning on trying some wheat free and now you’ve given me some direction.
Thanks. Becsbuddy
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1 Reaction@becsbuddy My pleasure, Becs!
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1 ReactionThe manufacturer itself says it may cause infections, and lists upper respiratory infections and fungal skin infestions as common ones.
https://www.skyrizi.com/psoriasis-psoriatic-arthritis/about-skyrizi/side-effects-and-safety
Fever and GI upset are also mentioned.
Apart from all that, you mention the pain returning 8 weeks before your next dose, which is hardly optimal, to use doctor-speak.
Could you ask for alternatives or see another rheumatologist?
I’m taking methotrexate at the moment, luckily no hair loss as it’s my last chance – apparently I’m “not sick enough” to try anything stronger or more sophisticated.
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2 ReactionsThere is hope for developing medicine that does not decrease the immune system.
A recent study from the University of Vienna, as reported by the UK site PAPAA:
“In this study researchers focused on developing a new approach to the treatment of psoriasis which, rather than blocking the activities of cells known to cause inflammation, instead focused on restoring the function of cells which normally prevent inflammation.
The researchers focused on the role of regulatory T cells (Treg cells) in chronic inflammatory skin diseases such as psoriasis. Treg cells are important components of the body's immune system that specialize in preventing excessive immune responses and thus inflammation."
https://www.papaa.org/news/current-features/a-new-treatment-option/
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2 Reactions@searcher1 Oh, I thank you for this. I’ll read it. Every single day, I wonder why (and if) medications might be developed that will help us preserve our immune system. It’s a scary thing to be out in this world with a weakened one.
And it’s funny too, that I so often think…we are told our immune system is in overdrive. Why, then, do the appropriate medications not bring us to a “normal” immune function level? Why are we forcing the immune “pendulum” to swing so far to the other side? Can’t we make it meet somewhere in the middle?
I don’t even know if that makes any sense, though I suspect people with autoimmune disorders understand. 😂
Again, thank you for infusing hope into the discussion. I appreciate that…and you!
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2 Reactions@searcher1 Very interesting article! Becky
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2 Reactions@becsbuddy It really was! I hope the research continues. It appears quite promising!
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1 Reaction@beachesanddreams 🙋🏼♀️!
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1 Reaction@rashida Good morning, Rashida! I knew you’d understand. 🙏🏻
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1 Reactionbeachesanddreams
You mentioned:
"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."
This is from the National Institute of Health:
'The mechanisms behind the exacerbation or new-onset of autoimmune/autoinflammatory diseases after receiving anti-COVID-19 vaccines are not yet fully understood, requiring further investigation. It is also not known whether rheumatic symptoms post-COVID-19 infection will have similar mechanisms to rheumatic symptoms post-anti-COVID-19 vaccination.
With the continuing worldwide vaccination against SARS-CoV-2, clinicians need to be prepared to discuss the risks and benefits of vaccination and should be aware that
it may cause or exacerbate immune disorders such as psoriatic arthritis,
warranting close follow-up in terms of disease progression and treatment."
https://pmc.ncbi.nlm.nih.gov/articles/PMC10793470/.
I had 4 COVID vaccine shots that produced 4 flares.
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