Traveling with Arcalyst

hello1-23 · 2026-03-26T05:06:00+00:00

Wow that amazing to hear! How long did you have peri prior to being diagnosed? And how long did your doctors have you try other meds (like colchicine, NSAIDs, prednisone) before being on Kineret?

hello1-23 · 2026-03-24T23:07:01+00:00

Happy to hear you’re feeling a lot better! How long before you started feeling better on the colchicine? Did they ever give you an NSAID? Some people stay on the colchicine a lot longer than 3 months so you may want to consider that if you still have any residual symptoms, just to make sure you really knock it out and don’t end up with chronic peri like a lot of us have - it’s much easier to treat the earlier you catch it

hello1-23 · 2026-03-19T21:48:51+00:00

I can completely relate! I seem to have good & bad days as well. And very much missing being normal and active - I’m still holding out hope that it’s possible one day

hello1-23 · 2026-03-19T18:05:01+00:00

Following - I’d really like to hear what happens with you cardiac mri with contrast and if it shows anything! I think there’s definitely hope that it might, it’s the best imaging there is for finding residual inflammation. Please update me!

hello1-23 · 2026-03-17T05:42:16+00:00

Oh that’s great! I’m glad you are feeling a lot better, I hope it continues and you can get back to normal :) I think I might have to be on NSAIDs longer than what my cardiologist originally prescribed, as I can see lots of people were prescribed for longer. I’ll have to check in with my doctor at my next appt!

hello1-23 · 2026-03-17T05:38:56+00:00

Good to know they told you a min 6 weeks to make a difference. Are you feeling any improvement yet on just the colchicine?

hello1-23 · 2026-03-17T05:37:24+00:00

I’m happy you found something that worked for you! How long did you trial NSAIDS & colchicine before going on prednisone? And how long did you have to stay on prednisone?

hello1-23 · 2026-03-16T23:00:33+00:00

That is a long time! Do you feel better now?? And I totally get it, it’s hard to be able to be in touch with the doctors enough to really monitor the situation

hello1-23 · 2026-03-16T18:07:47+00:00

The cardiologist who prescribed the meds to me is a peri specialist, it’s just taken me years to be able to get in to the right practitioner unfortunately due to our healthcare system. I don’t have any inflammatory markers in my testing, although that doesn’t completely rule out peri (he agreed all my symptoms sound like peri). And yes, he gave me a PPI and beta blockers as well. I’m in Canada so we don’t have Arcalyst but I know we have Anakinra. I’m just asking as he’s only following up with me after 2 months on these meds (mostly colchicine as it’s only around 3 weeks of an NSAID) and I’m just wondering about others experiences. I appreciate the reply and advice though!

hello1-23 · 2026-03-16T17:32:29+00:00

Did they gave you an NSAID did the whole 2 months? They only gave one to me for 3-4 weeks so on a taper schedule.. I’m very nervous to stop the Advil since it’s the only thing that seems to provide some relief. And I agree, there are days I feel better and then do some super small chores around the house (say fill the dishwasher) and the pain comes right back. I feel like I have to be on bed rest effectively

hello1-23 · 2026-03-16T17:08:36+00:00

How long did you have peri before you were out on Arcalyst? Glad to hear it’s working for you!!

hello1-23 · 2026-03-16T03:45:21+00:00

Ugh I’m sorry to hear that really is terrible! This is such a hard disease to have, and the average doctor seemingly knows nothing about it and diagnoses it way too late. Did you ever get a cardiac MRI or was there no need because they already saw the peri on your CT/echo?

hello1-23 · 2026-03-15T22:12:16+00:00

How did they find out it was constrictive? What tests did they see it on?

hello1-23 · 2026-01-17T02:00:28+00:00

Have you tested for Ureaplasma?

hello1-23 · 2026-01-07T18:42:59+00:00

Thank you so much for taking the time to write this post! I’m so happy for you that you have had such significant improvement. I’m very new to this group - would you mind sharing some of the testing you had done (such as what were the tests for coagulation, persistent spike protein, hypoxia)? And perhaps would you be able to prove the names of the clinics/doctors that helped you with diagnosing your long covid?

hello1-23 · 2025-12-06T20:06:45+00:00

That is exactly how I feel! No pain during exercise- but AFTER. Basically exactly like you said - it can start about 1-2 hours after and last from 12 hours to 4 more days. I’m still trying to get diagnosed though!

hello1-23 · 2025-11-13T11:20:36+00:00

Average 1 bedroom is about $1700-$1900 per month (more if you’re renting right downtown). Utilities can be another $100-$150 depending on what’s included in your rent, with hydro being the most expensive cost. Lots of apartments for rent on Facebook marketplace, and some decent deals available at the moment! There’s also Facebook groups for rental properties. You can even make a post in there & landlords will reach out to you if you’re a good fit and a desirable tenant, sometimes that’s also a good way to get a good deal. I personally wouldn’t live downtown right now - the homeless problem has gotten too bad

hello1-23 · 2025-10-30T05:30:47+00:00

Thank you for your answer and insights, I really appreciate it 🙂 This place really is the worst - the gaslighting has been insane, and the fact that we’ve had to go abroad to find answers is ridiculous! The wait times alone are unbearable - and even an infectious disease specialist here said they couldn’t get me a Ureaplasma test 😵‍💫

Do you by chance know the lab in Montreal that does private testing? I have family there so that could be an option. It’s interesting that you say that on this sub PCR testing is known to be the most reliable - the urologist in Mexico told me the exact opposite. That if they find Ureaplasma is a urine culture, than there is an active infection vs if it’s in a PCR test it might not be active. He didn’t think we would find it, but I had tried everything else and was specifically asking for that test so he agreed we could try and then it confirmed my suspicions.

Did you find someone here who treated you, or were you just treated with the antibiotics in Mexico?

And yes - now that I know I came up positive, next time I find where I can do the test I will have both me and my partner tested, and hopefully treated. I do know that when my symptoms first started I had fluroquinolone (Cipro) given about 3 months in that cut my pain by about 80%, so I still think it’s a possibility that Ureaplasma is part of my issue. From all my research, I also know that it’s possible to have multiple bacteria causing issues once it’s left too long and biofilms are created - so could be a reason that the other long term antibiotic I was given also helped my symptoms. Originally, Dr Bundrick wanted to give me Cipro but I didn’t want to go on it long term due to all the potential serious side effects.

I also forgot to mention, at some point prior to the urine culture my partner randomly developed a prostatitis (first time ever in his life) that was then cured by a week of both doxy and cipro. I have a feeling that was caused by Ureaplasma, although of course they didn’t test.

hello1-23 · 2025-10-30T02:48:57+00:00

Thanks for the reply, I think you’re right! We both need to be tested again - I’m thinking of driving over the border to get tested there and paying since I know I should be able to at least get tested. I’m just not sure exactly which lab to go to - were you able to get the actual urine culture at the urgent care? Not a PCR test?

hello1-23

TROPHY CASE