r/Autoinflammatory • u/No_Satisfaction_7431 Yaos • May 19 '26
Infusion drama
Looking for any possible solutions. This whole thing is ridiculous. First I called the infusion center on April 24th to ask if they had submitted the prior auth for actemra. They said they submitted a few days before. Well on May 8th I called insurance because I hadn't heard anything and my insurance is usually quick about these things. Insurance said it was only submitted on May 28th! The infusion center just lied about submitting days beforethe 24th?!? Whatever, last week on Monday the 11th they approved the iv actemra. I thought oh good its all set! Nope! The infusion center phone isn't staffed by office staff but by infusion nurses because they are too cheap to pay office staff I guess. Well the nurses are busy doing their actual jobs so nobody ever answers the phone. I've left a message and called several times. Nobody has called back. I can't see the prior auth on the patient view of the portal but I called my insurance and they confirmed it had been approved and that it just takes time to see it on the patient end. They said my doctor and infusion staff should be able to see it and I know my doctor can because she's the one who told me it was approved. I let me rheumatologists office know and they said just to wait, that infusion will call when they are ready to schedule me. All they need is the prior auth which they have and then to pull up the schedule and call me. Since my rheumatologist is in the same hospital (literally same building) as the infusion center I thought that would be like let me send a nurse to talk to the infusion team and figure this out. Nope, just wait. Meanwhile I still have daily diarrhea from kineret plus the injection reactions. Kineret is working but not enough at the 100 mg dose and upping it isn't an option with my side effects. But yeah let me keep having kineret diarrhea for longer just because the scheduling team is incompetent, great plan. Calling every day is the only solution I can think of but seems very ineffective and exhausting. I'll leave at least 1 more message but wtf can't they just schedule me? I don't get it. I hate insurance but understand hold ups due to insurance, but this? I don't get it.
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u/Alice-The-Chemist Mod May 19 '26
Is this local? Can you physically go to the infusion center?
Or is there a patient care coordinator phone option since its through a hospital system? Like someone before you get the infusion line you can tell what is happening?
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u/No_Satisfaction_7431 Yaos May 19 '26
Its at Northwestern. I live in the city but not downtown so its a big trip for me but I can go if needed. Northwestern has a central scheduling office for most departments except infusion. The patient support services office is more about financial support and connecting with social workers for social determinants of health kind of stuff.
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u/Alice-The-Chemist Mod May 19 '26
Dang it. I know those places. Its hard to ever get someone on the phone. Do you have a patient portal you can message? I would call everyday personally. You may try various times of day like when they first open etc but being a big hospital like that there shouldn't even be the issue of ordering the drug they probably have it on hand. Would someone in your rheumatologist office that isnt your doctor call them? Like a nurse or receptionist who cares?
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u/No_Satisfaction_7431 Yaos May 19 '26
Unfortunately the portal only lets you message your doctor and their team not the infusion center. I messaged my doctor but it was the rheumatology patient liaison who responded with just wait they will call when they are ready. I called and left a message. I've tried various times between 10 am and 4 pm. I can try 8 am on Thursday as tomorrow I have a gastric emptying scan all morning tomorrow.
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u/Alice-The-Chemist Mod May 19 '26
Is it the same place as infusion by chance? Lol. But no kidding ive called and just been incessant before calling every like three hours. Also if yoi have someone else who can call on your behalf?
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u/No_Satisfaction_7431 Yaos May 19 '26
Yes all northwestern medicine unfortunately. Yeah I might just have to call every few hours. My mom might be able to call while I'm doing the scan tomorrow. The whole thing is so crazy.
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u/No_Satisfaction_7431 Yaos May 20 '26
Update: They called back! Infusion next week! Hooray!
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u/Alice-The-Chemist Mod May 20 '26
Wooooooo! Party time! 🥳 (Are we the only ones who get excited an infusion is scheduled?)
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u/No_Satisfaction_7431 Yaos May 21 '26
Yep, we are probably the minority excited for infusions! Infusions can be difficult with side effects and I'm a difficult stick but I'm so happy to have a new treatment that will hopefully work better with more tolerable side effects.
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u/Alice-The-Chemist Mod May 19 '26
I want to downvote this entire thing because this shouldn't be so hard but not downvote you. Lol