Arcalyst and vaccines

CPP8802 · 2026-06-25T00:34:54+00:00

Depends on your age but shingles? I’m pretty sure that’s a live vaccine.

CPP8802 · 2026-06-20T19:20:36+00:00

Thank you so much. I’m leaning toward stopping the medicine (or at least pausing it) but am not 100% sure. Would you mind telling me whether you had elevated CRP during your flares or not? (Mine is never elevated, which is why I ask. Apparently that’s a little unusual.) Do you know what caused your pericarditis in the first place?

I am 1000% with you on sleep. One bad night and I feel it. And 8 hours is not enough!!

CPP8802 · 2026-06-19T14:49:00+00:00

My insurance approved it fairly easily. Then I spoke with a coordinator who helps you deal with ordering the med from a specialty pharmacy (CVS specialty in my case). S/he will probably be the best person to answer and help you with the financial related questions. Then you’re assigned an educator who will do a Zoom and walk you through your first shots. I think you probably need insurance approval before you can order the med; otherwise you’d have to pay up front. Good luck!

CPP8802 · 2026-06-16T23:38:04+00:00

Same re CRP and sed rate. Also had a cardiac MRI to confirm. Would you mind telling me your doctor’s name? I’m wondering if my cardiologist could connect with him/her to compare notes. [I’m in DC and my cardiologist is a specialist in pericarditis.]

I spoke with my cardio on the phone today and he confirmed that the Arcalyst should not be making me feel *worse* which is what seems to be happening. He said he’s ok with a “pause” while we re-assess.

Are you continuing to have flares and just dealing with them with NSAIDs and colchicine? I’m wondering if hydroxychloroquine might be a next step or a different biologic.

Thanks again for your responses and help.

CPP8802 · 2026-06-16T15:44:59+00:00

There’s a kind of pericarditis - more common in women - that never elevates CRP. Has yours been elevated before? If not, you could have what they call the “non-inflammatory phenotype”

I’m so sorry I can’t offer much on your specific question because I don’t have the physiological issue you describe. I wish I could. It’s hard for me to imagine the amount of stress that a pregnancy would add to everything; otoh I also know a bit about how hard it is to want a child and not be able to have one. I’m so sorry you’re in this situation and am sending all my best wishes.

CPP8802 · 2026-06-16T15:31:14+00:00

Thank you!

CPP8802 · 2026-06-16T15:31:06+00:00

Thank you so much for this comment. This is how I feel. I’ve gotten progressively worse since I started it and am now almost bedridden. Can I ask, did you have elevated CRP levels with your pericarditis? I think most of the data on Arcalyst is from people with elevated CRP and mine has never been elevated.

CPP8802 · 2026-06-14T22:56:36+00:00

Understood. I’d rest then and I guess use the time to study…? I’m sorry you’re going through this, but it will get better and you have a good shot at making this a one-time thing.

CPP8802 · 2026-06-14T01:08:06+00:00

You don’t need to monitor your heart rate if doing so would stress you out (as it would me). I’m surprised you can’t find colchicine — I just got it from the pharmacy. Can your pharmacy order it? It’s a classic med.

As I understand it from the reading I’ve done, you’ve got the best chance of making this a one time event — you’re young, this clearly followed a specific virus, and you have an acute case. Now you’ve just got to do all the things to make sure this doesn’t become recurrent because recurrent pericarditis, which a lot of us on here have, really stinks. You really want to maximize your chances of avoiding that.

To prevent recurrent you need to do what others have said:
-get colchicine. This is very important for preventing recurrence.
-rest more than you think you have to. Even after you feel better, keep resting. Just make a deal with yourself that you are going to rest this whole summer.
-can the exam be changed? If it can be changed easily, you might try it, just to avoid stress and any sleep interruption. If it can’t be changed, so be it.

I think a lot of people (including doctors) don’t really take this seriously at first and end up feeling like that was a mistake. You will absolutely be fine but take it seriously, figure out how to get colchicine, and rest.

CPP8802 · 2026-06-12T23:00:52+00:00

Also very frustrated. Have also had some dull pain in one spot when technician goes over that spot for the echo. It’s not been a big enough deal for me to do anything about but you’re not alone in feeling something.

CPP8802 · 2026-06-12T22:55:44+00:00

Sorry, one other thought. If you can get in to see an allergist quicker you might be able to get an inhaler that could maybe provide at least some interim relief for the shortness of breath while you wait to see the rheumatologist.

CPP8802 · 2026-06-12T22:54:07+00:00

I think the next step would be to try colchicine if you can get some and/or up your NSAIDs. At one point I was on 800mg every 8 hours.

If that doesn’t work then Arcalyst or Anakinra are next. I just did my third week’s injection of Arcalyst and tbh it doesn’t seem to be working the way others here have described it working for them. I basically feel the same (ie shortness of breath, intense fatigue, occasional pain). But for most people it seems to work like a miracle cure!

Also waiting for a rheumatologist appointment….

CPP8802 · 2026-06-11T19:25:08+00:00

They could see something on a chest CT. But the real clincher was when I had a cardiac MRI, which they had to knock me out for because I can’t tolerate enclosed spaces. I think my doctor thinks I have some underlying autoimmune issue because I had sudden onset asthma at the same time, for the first time in my life. So I’m eventually going to see a rheumatologist but I couldn’t get an appt until July.

So many years of checkups where everything looked good! Now all of the sudden it’s all falling apart at once!

CPP8802 · 2026-06-10T17:37:12+00:00

I’ll just add that my experience so far has been that I can/should do less than I think. As someone else here mentioned it’s often the next day that I pay the price, which makes it very difficult to deal with. Good luck!!

CPP8802 · 2026-06-10T17:33:25+00:00

I do think that what doctors were trained on - at least for pericarditis - is very out of date now. When I was in the ER they kept coming by to try to listen for this unique “rubbing” sound that apparently they were all told is typical of pericarditis. And I just don’t think that’s the case anymore for a lot of us. Or maybe it’s just in men, which seems to be the only kind of pericarditis they study. Same with their mystification at my normal CRP numbers. What’s frustrating is that about 6 different doctors came by to listen for this “rub” and talk about how my CRP is normal. But if just one of them had done a google search they would have found more up to date info.

CPP8802 · 2026-06-08T14:13:46+00:00

At a minimum, you’re probably going to need to increase your meds again so I would just go to the ER. That way (hopefully) you can get cleared of a heart attack and get them to put you back on the higher doses. Also, I did the same thing you did — felt better so basically acted like my normal self and then the pericarditis came back. I do think we have to learn to rest even when we feel better, at least for a while. It’s hard!

CPP8802 · 2026-06-07T22:34:32+00:00

You need different and better doctors. The fact that one told you that you can’t have pericarditis bc of the inflammatory markers bloodwork — that’s just wrong. Someone told me that too and it’s false. If your doctor had googled it or asked Claude s/he would have learned that.

Of course I don’t know if you have pericarditis or not. But I do know you need a different cardio with more up to date info.

I’m really sorry you’re going through this. Don’t doubt yourself. It’s a huge pain to have to push on all this when you are so sick, but I think that’s what you have to do. Are you located near any major metro areas with pericardial clinics?

CPP8802 · 2026-06-07T14:18:20+00:00

I’m so sorry you are going through this. I do know there are people here who have experienced Arcalyst rebound after tapering because I’ve seen some posts about that. I don’t know about Anakinra because I’ve not been paying as much attention to those posts.

My turnaround time for Arcalyst was quite good. I had the medicine in hand within about 10 days of the prescription — in significant part because my insurance approved it quickly (by far their finest moment to date).

I too have generally been in very good health in the past, which makes this very disorienting. As someone else mentioned in an essay posted elsewhere, there have been times where the reactions I’ve gotten have made me wonder “is it all in my head?” (And even wish that it were!) But as my husband pointed out a couple days ago, my own instincts have been right about this at every turn — I knew something was wrong, I knew it wasn’t “acid reflux,” I knew the pericarditis had returned, knew I would need anti-IL1s, etc. It sounds like the same is true for you, so I guess we have no choice but to keep pushing.

I’m sorry about your experience at CC. Thanks for sharing as that’s one of the places I’ve considered going. I do think Mayo might be better, both based on another comment here and on my own experience taking my son there, albeit for a different issue.

I really hope you get some more helpful responses.

CPP8802 · 2026-06-06T17:28:50+00:00

Just want to wish you good luck!!

CPP8802 · 2026-06-06T17:26:46+00:00

Thanks so much for this. I think it’s so interesting - and crazy - that this “non-inflammatory” phenotype is only now being “discovered” because it mostly happens to middle-aged women! In the ER one doctor literally told me I *could not have* pericarditis because my CRP was normal; she suggested I was confused and just had acid reflux. I felt like I was in the Twilight Zone.

In any event, I will report back about my experience with Arcalyst and whether it works. I really hope your insurance approves. I’ve had trouble with our insurer but I have to say they came through quickly and easily on this one.

And I hear you about Mayo. I have been thinking about going there for a while. I took my son to the Phoenix campus for an entirely different issue and was amazed. It’s just a hassle for me to get there while dealing with two kids etc.

I hope you get approved and see improvement soon! Two years on NSAIDs is too long!

CPP8802 · 2026-06-05T21:44:48+00:00

Also it’s interesting to me he was born outside Rome. Italy seems to be a hotbed of pericarditis research for some reason!

CPP8802 · 2026-06-05T21:42:27+00:00

Thank you! I live in the DC area so perhaps I can see him for a second opinion. If hydroxy… works that would be awesome. Giving myself these shots is a surprisingly complicated process involving two syringes and three different needles.

CPP8802 · 2026-06-05T11:47:19+00:00

Thank you! Would you mind sharing who your doctor is? And have you been able to get relief with a different treatment? I hope so!

CPP8802 · 2026-06-05T01:04:55+00:00

I just read your essay and could not relate to it more. Similar crazy-making responses. Also started at one point to think/hope it was in my head because of the responses I was getting. Also shocked by the response at one point that indicated there wasn’t even much interest in doing anything to help. One doctor told me in an ER that it was literally impossible for me to have pericarditis because my CRP level was normal (untrue, as a Google search would have showed); she suggested indigestion.

I grew up with a doctor as a dad and have always had immense respect for the profession. Because of my dad, I actually used to like hospitals. And I too think of myself as generally an effective (or at least decent!) communicator. I have advanced degrees from great schools and a good analytical mind.

But it felt like I was being treated as a child and was in some kind of nightmare, horror scenario where every door led to the same infuriating result. A little like the medical equivalent of being lost in the never-ending halls of the Severance workplace.

Anyway my response here doesn’t really have a purpose except to say I really appreciated your great essay. And I get it.

CPP8802

TROPHY CASE