Has anyone experienced repeated infections while taking SKYRIZI

Posted by beachesanddreams @beachesanddreams, Nov 6 9:55pm

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. ✨

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@beachesanddreams each body reacts differently with the same medication. Methotrexate worked great for me but Skyrizi did nothing for me. Now I am on Bimzelx which has cleared my scalp psoriasis but now I have developed it in my ears!

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Oh my gosh, Rashida, that is crazy! I hope that isn’t painful for you. And I certainly hope the itching isn’t driving you mad. That’s the thing about these drugs. From all I’ve read, the biologics are great for those who had psoriasis all over their bodies. It seems scalp psoriasis is a different beast altogether.

I didn’t make clear: aside from the side effects, the methotrexate was very effective for me as well. My rheumatologist assured me my hair wouldn’t fall out, but it did, a lot. I read after the fact that people with scalp psoriasis tend to lose their hair more with methotrexate than those who didn’t have psoriasis on the scalp.

But now, it’s these out-of-the-blue fevers/infections that are so troubling. It’s stressful for sure.

Thank you for your response. I do hope your situation clears up soon. 🙏🏻

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@beachesanddreams I wonder if all biologics cause hair loss. I have been losing hair consistently since I have been on biologics … first on Stelara, then Skyrizi (both of which did nothing for my psoriasis but I noticed hair loss) and now on Bimzelx. My dermatologist doesn’t think hair lost is attributed to Bimzelx but I think he is so pleased that my scalp has cleared on Bimzelx he is minimizing other side effects, just offering me other meds to combat the side effects.

I feel caught between a rock and a hard place with psoriasis treatment. My oral medication, Methotrexate, worked great in clearing 99.9% of my psoriasis (just have a stubborn patch the size of a dime on one elbow that has refused to budge even now), but because of history of fatty liver disease I couldn’t stay on it long term. Now I am on a biologic which is considered safe with my fatty liver but I am losing hair consistently since- though probably not at the same level as you are - and am unusually tired all the time.

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“…I think he is so pleased that my scalp has cleared on Bimzelx he is minimizing other side effects, just offering me other meds to combat the side effects.”

Oh, how I understand this.

While hair loss is, to my knowledge, only indicated for methotrexate (at a higher percentage for those with scalp psoriasis), results, as they say, vary. My hair does grow back between these irritating small infections, but fever also causes hair loss, 2-3 months after it resolves. I feel like I’m on this vicious cycle, and I want off.

Stress also causes hair loss too, of course, and many of us on these drugs have stress up the wazoo. Controlling stress is super important for both inflammation and hair loss, so that’s something I work on every single day.

Fatigue is also tough to deal with, as stress exacerbates this as well. Good sleep is so important, and elusive, too. I found yoga moves for sleep on YouTube that gently stretch and relax the body. It helps, as does a magnesium supplement and a cup of sleep tea before bed. I fall into a nice, relaxed state, and wake once during the night, but always fall back to sleep.

I’m glad we connected here, Rashida. Seems like you and I share many of the same concerns.

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@beachesanddreams. Welcome to Mayo Clinic Connect! I’m sorry that irritating medical problems brought you to this site. Have you gone to a dermatologist who sees people with hair loss? You really need to get to the cause of this problem. You might even call the drug manufacturer and tell them about your prob with SKYRIZI. At the very least, the lab needs to put your info on a list of untoward effects from the drug.
I talk too much. We should wait for members, of this support group, what works or doesn’t work for them!

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Profile picture for beachesanddreams @beachesanddreams

“…I think he is so pleased that my scalp has cleared on Bimzelx he is minimizing other side effects, just offering me other meds to combat the side effects.”

Oh, how I understand this.

While hair loss is, to my knowledge, only indicated for methotrexate (at a higher percentage for those with scalp psoriasis), results, as they say, vary. My hair does grow back between these irritating small infections, but fever also causes hair loss, 2-3 months after it resolves. I feel like I’m on this vicious cycle, and I want off.

Stress also causes hair loss too, of course, and many of us on these drugs have stress up the wazoo. Controlling stress is super important for both inflammation and hair loss, so that’s something I work on every single day.

Fatigue is also tough to deal with, as stress exacerbates this as well. Good sleep is so important, and elusive, too. I found yoga moves for sleep on YouTube that gently stretch and relax the body. It helps, as does a magnesium supplement and a cup of sleep tea before bed. I fall into a nice, relaxed state, and wake once during the night, but always fall back to sleep.

I’m glad we connected here, Rashida. Seems like you and I share many of the same concerns.

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@beachesanddreams yyyepp … I am stressed too - big time!

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Profile picture for rashida @rashida

@beachesanddreams yyyepp … I am stressed too - big time!

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@rashida I am too, believe me. If I knew how to boost my immune system so I might keep these little infections at bay, I would stay on it, to be honest.

I am fearful of a big infection that would take damage my immune system.

I’m sending you a big, healing hug. I think we both need one.

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@beachesanddreams. Welcome to Mayo Clinic Connect! I’m sorry that irritating medical problems brought you to this site. Have you gone to a dermatologist who sees people with hair loss? You really need to get to the cause of this problem. You might even call the drug manufacturer and tell them about your prob with SKYRIZI. At the very least, the lab needs to put your info on a list of untoward effects from the drug.
I talk too much. We should wait for members, of this support group, what works or doesn’t work for them!

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@becsbuddy Hi Becky! Oh, please, do talk away, that’s why we’re here!

That’s a great and helpful question for all about seeing a dermatologist…I did see my wonderful dermatologist. She did bloodwork to look at vitamin/iron levels (all good there, I supplement well), and suggested I take Nioxin System Kit 4, which is a shampoo, conditioner for the scalp, and a serum for fullness. It thoroughly cleanses, hydrates, and nourishes the scalp so that you lose less hair, while prepping the scalp for healthy new growth. It’s worked very well for me. I recommended it to a friend just yesterday.

My hair is starting to grow back at the hairline and I’m feeling more fullness, plus I am shedding a bit less. I’ve kept a small hair journal in my bathroom to track the hair loss and write little boosters and affirmations to myself. That’s been very helpful for me.

I took methotrexate prior to SKYRIZI. That’s what caused the primary hair loss. Then I had an infection with fever after my second SKYRIZI infection three months later, and fever often causes hair loss 2-3 months afterwards.

Becky, I can’t tell you how many people have told me SKYRIZI isn’t responsible for any of my infections. I know it is a lifesaving drug for so many people who never have infections on it, but I’ve had 3, and I don’t know what to do.

At any rate, I’m gentle with my hair, take collagen and biotin, and have found cute “ponytail scrunchies” and a really pretty hair topper on Amazon for when I want to glam up.

We do what we have to, right?

So nice to have met you here, Becky!

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Profile picture for beachesanddreams @beachesanddreams

@becsbuddy Hi Becky! Oh, please, do talk away, that’s why we’re here!

That’s a great and helpful question for all about seeing a dermatologist…I did see my wonderful dermatologist. She did bloodwork to look at vitamin/iron levels (all good there, I supplement well), and suggested I take Nioxin System Kit 4, which is a shampoo, conditioner for the scalp, and a serum for fullness. It thoroughly cleanses, hydrates, and nourishes the scalp so that you lose less hair, while prepping the scalp for healthy new growth. It’s worked very well for me. I recommended it to a friend just yesterday.

My hair is starting to grow back at the hairline and I’m feeling more fullness, plus I am shedding a bit less. I’ve kept a small hair journal in my bathroom to track the hair loss and write little boosters and affirmations to myself. That’s been very helpful for me.

I took methotrexate prior to SKYRIZI. That’s what caused the primary hair loss. Then I had an infection with fever after my second SKYRIZI infection three months later, and fever often causes hair loss 2-3 months afterwards.

Becky, I can’t tell you how many people have told me SKYRIZI isn’t responsible for any of my infections. I know it is a lifesaving drug for so many people who never have infections on it, but I’ve had 3, and I don’t know what to do.

At any rate, I’m gentle with my hair, take collagen and biotin, and have found cute “ponytail scrunchies” and a really pretty hair topper on Amazon for when I want to glam up.

We do what we have to, right?

So nice to have met you here, Becky!

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@beachesanddreams You sound so much better! Just talking about problems really does help.
As for infections, SKYRIZI can be the cause. Many autoimmune diseases have medications that lower your immune response. YOU then need to do your best to prevent infections. Wearing a mask in crowded spaces is key, also good handwashing, washing veggies and fruits, avoiding sick friends or anyone!
Ask your doctor what they look for to evaluate whether you are in good shape to avoid infections. My doctor told me to watch my absolute leukocyte count ( it’s in the blood chemistry report of my blood tests). I’m supposed to keep it at 0.6. I’m not going to say anymore because I’ll get to confused!
How is your son doing in college?

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@beachesanddreams I agree with @becsbuddy and her suggestions. Most medications taken for autoimmune conditions may not be the direct cause of infections but they do lower your immune system, which in turn leaves you vulnerable to infections. So wearing a mask and everything else suggested definitely could help.

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