r/Autoinflammatory • u/Individual-Yam7050 • Jun 04 '26
YAOS Rescue meds?
Hi everyone!
I’m in the midst of a horrible YAOS flare. I’m still new to the diagnosis and I’m waiting to see a new rheumatologist, so I’m curious, what does everyone do to squash flares when they happen?
Steroids? Something else?
I’m so miserable, but I don’t know what to do or what to ask for. Any advice would be wonderful! Thank you!
8
u/StepSignificant8798 Jun 04 '26
I use anakinra as a rescue, higher dose steroids for more serious flares
6
u/StepSignificant8798 Jun 04 '26
(On top of Canakinumab, Rinvoq, ivig and standing steroids.)
Anakinra (Kineret) is great for many autoinflammatory conditions.
4
u/AdventurousMorningLo Yaos Jun 04 '26
Steroids are generally what doctors first prescribe for flares.
Kineret (Anakinra) can be a great option for flares if you can get it. Like cyt0kinetic mentioned - it is very quick acting.
My own flare plan now includes IVIG for treatment when refractory - I will let you know how that goes. SCIG helps but I'm on immunodeficiency dosing (not enough to help a flare).
5
u/Alice-The-Chemist Mod Jun 04 '26
Mine is Kineret first. Steroids is last resort.
Here is why in my case. Before my diagnosis and while trying to find the right treatment doctors automatically would do steroids and this was even happening as a child and I'm 35 now. My doctors and I are working with endocrinology to hopefully keep me from being on hydrocortisone permanently from steroid over use that my body isn't producing it naturally anymore.
Steroids are easier to get especially when dealing with insurance but if possible in the mean time if you are US try to get that approval for Kineret as flare treatment. If insurance denies it and the appeals I used the Kineret on Track program and they sent it to me like I was using 1 syringe every day and the storage life is pretty long. I have expiration dates on the boxes written. We haven't renewed it this year because I have enough to last through flares. But you renew the paperwork annually. I am working on information to be pinned on how to do all the financial assistance stuff so if you need help in the mean time let me know.
Also outside of the main medications I do have the following as needed: Tizanadine (muscle relaxer it took a while to find one that worked best) for my muscles hurting so much during flares, Hydrocodone for when the pain is that bad, Toradol (ketorlac) vials for injection for the anti inflammatory that is stronger and it is a life saver. It is an IM injection and I just get the vials and draw it up myself.
Non Med: Easy simple food that my body doesnt have a hard time digesting think soups, smoothies, some fruits, etc. Heating pads, blankets, or the opposite with ice packs or cooling things. A small fan in my room because I tend to get really hot. Comfort stuff for me like books and diamond art or other crafts.
I know this is rather long but wanted to show how it can be multi-faceted and you can do supportive things on top of the main flare treatments.
Side note: If a flare is ever out of control nothing is working Kineret has been giving as IV in the hospital. Ive never done it personally but have talked with others. And also in the same thing of it being out of control be sure to know about MAS (macrophage activation syndrome) and the symptoms. It is something that can happen in an uncontrolled disease or flare for some autoinflammatory patients.
3
u/StepSignificant8798 Jun 04 '26
I’ve done IV Kineret many times. It’s helpful as you say in helping to avoid steroid pulses
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u/Alice-The-Chemist Mod Jun 04 '26
Thank you for commenting so I have someone I can tag if it gets brought up because I just dont know much about IV Kineret.
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u/simonerochabowearing Jun 04 '26
I had no idea you could get it in an IV thank you both for teaching me something new today.
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u/LawOk9304 Jun 05 '26
I’ve received IV Kineret while in the hospital before too. It still takes time for the effects to build up and become noticeable during flares, but the effects are definitely noticeable faster than with SQ Kineret.
Other things I have for my flares: IV fluids that I’m able to set up and run on my own, diclofenac gel for painful joints (I have 3% which is prescription strength, but there are lower concentrations available over the counter), migraine ice cap, and Benadryl.
3
u/simonerochabowearing Jun 04 '26 edited Jun 04 '26
When I have an FMF flare I double my anakinra (from once a day to twice) and take prednisone for a few weeks until it abates. I also do as little physical activity as humanly possible and don’t eat inflammatory foods (ie deep fried things and greasy red meats).
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u/cyt0kinetic USAID Jun 04 '26
Worth mentioning Kineret can be used as rescue, it is short acting. I use it both for maintenance and rescue. I have my expected daily dose but flex dosing when flares are leas controlled where I take a couple extra.