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.

Profile picture for swalex @swalex

@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

Jump to this post

@swalex I am sending you the biggest Internet squeeze ever. You have really been through it, and for a long time, at that.

Thank you very much for your note and the video. I have an appointment I must make at noon, but I will watch it today, I promise.

REPLY
Profile picture for beachesanddreams @beachesanddreams

@swalex I am sending you the biggest Internet squeeze ever. You have really been through it, and for a long time, at that.

Thank you very much for your note and the video. I have an appointment I must make at noon, but I will watch it today, I promise.

Jump to this post

@beachesanddreams
Good luck with your appointment.
There's another video focusing on brain inflammation—let me know if you'd like more information about it.

REPLY
Profile picture for swalex @swalex

@beachesanddreams
Good luck with your appointment.
There's another video focusing on brain inflammation—let me know if you'd like more information about it.

Jump to this post

@swalex please post the link to the other video too. I’m interested!

REPLY
Profile picture for rashida @rashida

@swalex please post the link to the other video too. I’m interested!

Jump to this post

@rashida "brain inflammation"

REPLY
Profile picture for beachesanddreams @beachesanddreams

@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.

Jump to this post

@beachesanddreams
I use topical steroids (clobetasol) for moderate topical psoriasis. Its helpful but hardly a cure. 6 months of Sky my symptoms improved but did not resolve. Not even close to worth it considering the repeated infections.
Worst part of stopping is not so much the rebound of skin symptoms but the increase in osteoarthritis type joint pain that did improve on Ski .... but then again in no way worth it. Who knew it was an effective anti inflammatory?
Poor due diligence on my part!
Caveat emptor!

REPLY

Truth be told, there is WAY to much info out there for any medical provider to know so they usually follow the drug company line... "Skyrizi didn't cause your infection" even though the #1 side effect listed is "increased risk of infection." Hmmm a little contradiction there?
I am curious to know more of you "gluten and lactose free" diet. Any pointers? How long to notice a change? Hard one for me as a known "carbo-holic" especially gluten.

REPLY
Profile picture for alfalfa52 @alfalfa52

@beachesanddreams
I use topical steroids (clobetasol) for moderate topical psoriasis. Its helpful but hardly a cure. 6 months of Sky my symptoms improved but did not resolve. Not even close to worth it considering the repeated infections.
Worst part of stopping is not so much the rebound of skin symptoms but the increase in osteoarthritis type joint pain that did improve on Ski .... but then again in no way worth it. Who knew it was an effective anti inflammatory?
Poor due diligence on my part!
Caveat emptor!

Jump to this post

@alfalfa52 I agree with you about this, I really do. My hairdresser informed me today that the itching I was experiencing along the base of my scalp looks to be the psoriasis returning.

I rid myself of it 10 years ago by eliminating gluten and lactose from my diet. Now it’s back? Yet another inflammatory response from a drug that’s supposed to reduce it. This is just…not ok with me. It’s so confusing to me!

I have an appointment with my dermatologist in December. She can verify this for me, so I’m not going to worry about it, but I had to use Clobetasol solution for the first time in a long time.

I keep googling “do I have to stay on a biologic forever?” and the answers that come up explain that it’s best to be in remission before coming off them completely.

But what is remission when your body hurts/feels inflamed from the inside, and a skin condition you eliminated comes back? (I did not change my diet one bit. My stomach would revolt if I had wheat again.)

I wish I had gotten a second opinion before starting anything, to be honest. I went to my rheumy for Osteoporosis, and I went down a completely different journey. That’s on me.

I’m hoping to hear from the doc I got a second opinion from. I’ll feel better with her recommendations, I think. I hope.

Oh alfalfa, I am wishing you a peaceful evening, and soft dreams tonight. Thanks for your response. ✨

REPLY
Profile picture for alfalfa52 @alfalfa52

Truth be told, there is WAY to much info out there for any medical provider to know so they usually follow the drug company line... "Skyrizi didn't cause your infection" even though the #1 side effect listed is "increased risk of infection." Hmmm a little contradiction there?
I am curious to know more of you "gluten and lactose free" diet. Any pointers? How long to notice a change? Hard one for me as a known "carbo-holic" especially gluten.

Jump to this post

@alfalfa52 It was at the suggestion of a rheumy I visited 10 years ago, that I visit a nutritionist in town.

She put me on a gluten-free diet - no wheat or wheat products. Back then, gluten free pastas were in rice form, and they were so mushy, it was just better to eat rice.

Rice & quinoa are GF, Cheerios (not all varieties, check the box) & Chex are too. Today, GF varieties of pastas, cereals, breads and oatmeals are actually wonderful, and they’re not as expensive as they once were. They’ve come a long way. Trader Joe’s has a wonderful GF oatmeal, ET bagel, and English muffin, as well as cupcakes and other desserts. Whole Foods has tons of GF products too, of course, but they’re pricey.

I finally found a fantastic recipe for gluten free bread. I made 3 loaves last month alone and froze them.

Definitely go online and search for “gluten free foods.” Best way is to eliminate for a week or two, then go back, and see what happens. If you find your symptoms resolve or lessen with the elimination of gluten, well, there you go.

There’s a wonderful enzyme called GlutenEase, available on Amazon, that you take with a meal containing gluten, or that you think may contain gluten. My gastroenterologist recommended it to me years ago. I did 11 days in Barcelona back in 2019, ate EVERYTHING in sight, and didn’t have a single flare or issue.

As for lactose, Lactaid has milk and ice creams, as well as an enzyme you take with the first bite of dairy. You can take Lactaid and GlutenEase together. (Drugstores have their generic version; it’s usually cheaper too.)

I don’t need an enzyme with yogurts, cottage cheese, or feta cheese. Some other cheeses I do; it’s kind of a hit or miss, but taking the Lactaid regardless ensures I don’t suffer. I’ve had a problem with dairy since I was a little girl. I keep the enzymes in a small pill bottle in my purse, so I’m always good to go.

Hope that helps!

REPLY
Profile picture for beachesanddreams @beachesanddreams

@alfalfa52 It was at the suggestion of a rheumy I visited 10 years ago, that I visit a nutritionist in town.

She put me on a gluten-free diet - no wheat or wheat products. Back then, gluten free pastas were in rice form, and they were so mushy, it was just better to eat rice.

Rice & quinoa are GF, Cheerios (not all varieties, check the box) & Chex are too. Today, GF varieties of pastas, cereals, breads and oatmeals are actually wonderful, and they’re not as expensive as they once were. They’ve come a long way. Trader Joe’s has a wonderful GF oatmeal, ET bagel, and English muffin, as well as cupcakes and other desserts. Whole Foods has tons of GF products too, of course, but they’re pricey.

I finally found a fantastic recipe for gluten free bread. I made 3 loaves last month alone and froze them.

Definitely go online and search for “gluten free foods.” Best way is to eliminate for a week or two, then go back, and see what happens. If you find your symptoms resolve or lessen with the elimination of gluten, well, there you go.

There’s a wonderful enzyme called GlutenEase, available on Amazon, that you take with a meal containing gluten, or that you think may contain gluten. My gastroenterologist recommended it to me years ago. I did 11 days in Barcelona back in 2019, ate EVERYTHING in sight, and didn’t have a single flare or issue.

As for lactose, Lactaid has milk and ice creams, as well as an enzyme you take with the first bite of dairy. You can take Lactaid and GlutenEase together. (Drugstores have their generic version; it’s usually cheaper too.)

I don’t need an enzyme with yogurts, cottage cheese, or feta cheese. Some other cheeses I do; it’s kind of a hit or miss, but taking the Lactaid regardless ensures I don’t suffer. I’ve had a problem with dairy since I was a little girl. I keep the enzymes in a small pill bottle in my purse, so I’m always good to go.

Hope that helps!

Jump to this post

@beachesanddreams Could you provide a link to the GF bread recipe you like? Thanks

REPLY
Profile picture for alfalfa52 @alfalfa52

@beachesanddreams Could you provide a link to the GF bread recipe you like? Thanks

Jump to this post

@alfalfa52 For some reason, I am not able to post links here just yet, but do Google thehealthyhomecook.com. From there, search “Easy gluten free artisan bread” and you’ll find recipes for several varieties of bread. The extra xanthan gum in the recipe makes all the difference, so do make sure you have that on hand. I had best results with using Bob’s Red Mill All Purpose 1:1 Gluten Free baking flour.

REPLY
Please sign in or register to post a reply.