Has anyone experienced repeated infections while taking SKYRIZI

Update: Here I am, the night before Thanksgiving, and I really am at my wit’s end.

I’ll start with this: is anyone taking SKYRIZI and Prolia together, and if so, have you had prolonged or repeated infections while on both?

I found another rheumatologist I like a lot, and had an appointment yesterday. She gave me the choice of staying on SKYRIZI for PsA, or Rinvoq. I chose to stay on SKYRIZI.

She then recommended Prolia for Osteoporosis. Now, I mentioned to her that I have been having a very difficult time mentally being immunocompromised on this drug, especially since I’ve had some intestinal reactions to it (pain and fever), as well as temporary inflammation in the ear with hearing loss. I told her I was working through these fears with a therapist.

The office called me today to say my insurance approved it, and I set an appointment for the Prolia next Wednesday.

I got it in my head about a half hour ago to check to see if Prolia suppresses the immune system, and sure enough…it does. So now it appears I’ll be on not one, but two medications that will make me susceptible to infection. And SKYRIZI has one fun little group of infections, while Prolia has its own delightful little basket of its own.

Add to all of this, I am having a VERY difficult time getting info from anyone - two doctors, countless nurses, even the SKYRIZI people - to educate me on how to space important vaccinations with my next SKYRIZI dose. It’s as though that information doesn’t exist.

This forum has been really helpful with regard to the experiences of others, which is why I added this update.

I put in my calendar for Friday to message the doctor about my concern, say I want to cancel the Prolia, and start over. I just cannot take anything that will cause my immune system to be lowered further. I am really struggling mightily with this, and I’m angry, frustrated, and quite frankly hurt that she (or the first doc) just didn’t take this into consideration. It’s a big deal.

This is such a great forum for support. I was hoping to update with more promising news, but I feel so overwhelmed. I know there are folks out there who have it far worse than I do. But I’ve been living like a recluse, and it’s talking a toll.

I’m going to take deep breaths for now, have a little cry, and get through Thanksgiving tomorrow. On that note, I am wishing everyone a lovely, happy, and healthy day.

@searcher1 I am just now seeing your reply, my apologies.

The only reaction I’ve had to a COVID vaccine was with the very first one; elevated temperature, fatigue, some body aches. They lasted one day. Every covid vaccine since, just a sore arm and some fatigue. That’s it. No pain anywhere in my body.

The bad back pain started after the viral infection itself. The virus causes inflammation in the body, we know that. Vaccines can too, but for me, it was to a far lesser degree.

I feel - and I could be 100% wrong in this - that doctors are dismissing symptoms after having COVID, and pass it along (diagnose) as something else. I’m of the opinion COVID needs measured study as a latent infection. I have a few doctors who “wonder” about this, but they don’t actually look to see if this might be the case.

Everything is, “we just don’t know.”

Well then, figure it out, please.

Wishing you a lovely day.

I was on skyrizi , switched from cimzia because it got approved for Crohn's and Skin problems, so I switched, but I was having pain in my left hip before starting that got so much worse after the initial starting dose that I stopped, ended up having hip surgery!
It's been my experience that they will put you on several immunocompromised medications at the same time, you have to really be your own advocate with this! Staying away from situations where you are compromised, around sick people, start wearing a mask 😷 it's vital!
Research everything, preferably before you start anything new and have notes with specific questions prepared for your visit it's key, do not allow NO info as an answer!
As far as Vaccines go, you can not ever have a live vaccine,but artificial are usually OK!
I hope this helps, wishing you good luck!

@bbmayo Thank you so much for your thoughtful, caring, and detailed response! I love your spicy, “don’t take no for an answer!” Well said!

I hope you are doing well after your hip surgery. What an unpleasant way to find out you needed it to begin with. Do you mind if I ask…did you go back on SKYRIZI after your procedure?

I mask everywhere I go, and just bought a box of 3M aura masks. I wash my hands constantly, and am doing my holiday shopping online or first thing in the morning. I’m skipping two holiday parties this year because friends are traveling all over the place, and I know they don’t take any precautions whatsoever. So I’ll FaceTime in. It won’t be the same, but I’ll still get to participate a little bit.

As for being my own advocate…my goodness, it’s an exhausting full-time job, isn’t it? And it’s so funny you suggest going in with notes; I had an entire list of questions in a notebook when I last saw my doctor.

A lot of my anger and frustration stems from the fact that when I do ask questions like, at what point in the treatment should I get a vaccine, when should I safely visit the dentist, etc, the answers I get are so VAGUE. “Wait a couple of days,” “a few days is fine,” and my favorite from the fine folks at AbbVie…” oh, I’m sorry, I don’t have that information.”

I need a team of doctors to tell me bits and pieces about one drug that the one doctor who has prescribed it can’t answer. 🤦🏻‍♀️

I wouldn’t mind SKYRIZI if I didn’t have weird “rogue” fevers and inflammation popping up in other parts of my body.

Let’s all stay safe and healthy this winter season! ❄️

@beachesanddreams
No, I didn't go back on Skyrizi due to increased joint inflammation, exact opposite of what I thought it would help with, but I started just after it was approved for Crohn's, it wasn't divided into separate disease considerations yet, now it's listed as good for Colitis, not as good for Crohn's!
Also, I had to go off all biologics for a year before 1st surgery on hip, a years worth of prep and still got infection 😱. You'll need to do s lot of your own research for just about everything , preferably before you actually start anything and as far as gatherings go, your life will need to change, it is hard, not gonna lie, but those that really care for you will adjust and keep your welfare in mind ! I joined some support groups and that has helped a lot, being able to see what others say, tips, just socialization I a different form! Well wishes!

@bbmayo The socialization part…it IS a struggle, you are so right. It’s hard for women to ask for “accommodations” anyway, and that compounds the sadness of the whole thing.

I have two groups of friends who are so understanding. Another group, well, I’m about to find out.

My family has always treated Covid like it was no big deal. There’s really no reasoning there.

As for the asking questions prior to starting a new medication…I am kicking myself for not asking a lot more about my psoriatic arthritis diagnosis and getting a second opinion.

First rheumatologist beseeched that every day without treatment it, I was doing damage to my joints, which would affect me into old age. That was terrifying.

Second rheumatologist told me based on X-rays she took that there “is no evidence of prior joint inflammation.” Which doesn’t rule out inflammatory arthritis, she said, BUT WHAT DOES THAT MEAN?!

That’s why I’d like to come off the SKYRIZI. Let’s get to the bottom of this, shall we?

Your replies have validated everything I’m feeling about my current treatment and the mental/emotional difficulties surrounding it. Thank you for this. 🙏🏻 I’ll continue to fiercely advocate for myself, ask questions, and do all I can to stay safe and sane.

Maybe it won’t be forever. Who knows, right?

They put my daughter on Skyrizzi and she had to never take it again. She got terrible infections and her face swelled up. That class of drugs does open u up to infections so u need to keep and eye on yourself. Her infection started with bumps under her skin

@judyresnick Oh my gosh, I’m so sorry for your daughter. I’ve read that skin reactions can happen on Skyrizi.

Thank you for your kind advice. 🙏🏻 I am so careful, and have committed this holiday season to making myself comfortable and cozy at home until the holidays pass. Every day, I am more comfortable with this decision. I wish we as a society learned from the pandemic, but sadly, we haven’t.

And today, news that hospitals and other health centers in Spain have required masking again, and the UK is already experiencing a horrible flu season.

I live in south Florida, where the entire world visits during winter, so being around crowds is a no-no this year.

My holiday lights are up, I’ve got streaming, my journal, and books. Like I said…cozy.

I hope your daughter is well, and I’m wishing you, and her, and yours a bright and healthy holiday season. 🎄

@swalex can you tell me what side effects you had with methotrexate? I have Chiari malformation and nonspecific connective tissue disease. I’m on methotrexate, which helps my headaches and nausea from Chiari but causes leg cramps and weakness. My doctors do not believe the cramps and weakness are connected however.

@lwoodbrey
Dependent on your dosage.
You may find more definite evidence in this link:
Side effects of methotrexate:
https://www.nhs.uk/medicines/methotrexate/side-effects-of-methotrexate/
In addition:
Methotrexate Tablets:
https://my.clevelandclinic.org/health/drugs/20143-methotrexate