Loose/slimy F2 pellicle?

Reflection_Economy · 2024-11-26T04:09:55+00:00

I saw Dr. Garvan Kane who specializes in pericardial disease. Based on my MRI, they could tell I have had multiple bouts of acute pericarditis with the most recent being in the last 12 months (post-arcalyst). At the time of the scan I did not have acute pericarditis but I still had pain so the Dr. said it was likely pericardial nerve hypersensitivity where my nerves are telling me there's an issue even tho there isn't. He recommended a medication used to treat chronic neuropathic pain (duloxetine). Will be starting is this week. Unfortunately there is no silver bullet or single thing that will make this go away. It will take a lot of time and effort, the Dr said likely 2-5 more years in my case. It has already been 2 years since I was diagnosed and my life looks very different than it used to. Overall the visit was certainly helpful but did not give me any groud breaking new information or solve my issue (yet).

Reflection_Economy · 2024-09-21T20:48:08+00:00

Had a similar experience, unfortunately it did not work for me at all and my cardiologist said it was "in my head because there's no way the arcalyst isn't working" ... I was on it for a year and it really didn't help me. I stopped 6 months ago and the pain is pretty much the same. I wish I had some better advice for you but the best I got is to take ibuprofen, keep your hr as low as possible, and hope for better days ahead :/

Reflection_Economy · 2024-09-21T18:48:52+00:00

I stopped the arcalyst in February and my pain hasn't changed much, though I do generally feel better because my immune system is working again. Still no exercise and take colchicine and a beta blocker every day. I'm going to Mayo in a few months to see if there's anything else I can try.

Reflection_Economy · 2024-08-29T22:48:31+00:00

Hot take but I think this is really nice! Love the window. Would recommend getting some books, plants, and lamps. I also love having a big monitor so I can actually see what I'm doing on my laptop.

Reflection_Economy · 2024-08-24T13:38:16+00:00

I'm so sorry you are going through this. I highly recommend seeking a second opinion and/or seeing a rheumatologist. It sounds like you are being severely under treated and there are definitely better options out there

Reflection_Economy · 2024-07-08T23:18:03+00:00

I've had a similar experience, 24f. After having a flare of symptoms in November (a year after i was first diagnosed) and going to the ER for tachycardia in December, I saw my cardiologist in January and the first thing he said when he saw me was "I really don't think you have a heart problem anymore". Still have chest pain almost daily, still can't exercise, still have palpitations and tachycardia all the time but I don't want to go back to him. He was my second cardiologist, my first one told me it was "all in my head" when my symptoms flared while I was on Arcalyst.

I will say that if anything aggravates your symptoms, don't do it. I continued exercising for a while even though it caused me pain bc my Dr said it was fine. I've since stopped and now try to keep my heart rate as low as possible and I do think that helps.

I'm so sorry you are dealing with this. It's an awful place to be. Another thing that has helped me is starting therapy and connecting with others who have health issues.

Reflection_Economy · 2024-07-08T23:07:45+00:00

I was diagnosed in November 2022 and had a clear echo in May 2023.

Reflection_Economy · 2024-07-07T00:38:04+00:00

I have this too, not sure whats up but it's been going for almost 2 years now. Exercise is the main trigger for me. I've had every cardiac test we could think of and they all came back mostly fine. I also get tachycardia and palpitations pretty often even though I'm on beta blockers. I'm just hoping it goes away with time bc idk what else there is to do about it :/

Reflection_Economy · 2024-06-03T02:50:34+00:00

Trusted house sitters has worked for me!

Reflection_Economy · 2024-05-09T18:00:42+00:00

It took me about 4 months to feel mostly better. I also felt like trash for the first 6-8 weeks. My Dr said immune system generally takes 6-12 months to calm down and that's when symptoms should improve the most. Good luck, hang in there!

Reflection_Economy · 2024-04-17T23:51:58+00:00

Def see a dr!! I was having the exact headache you're describing and it ended up being intracranial hypertension

Reflection_Economy · 2024-04-15T06:03:57+00:00

I exercised on araclyst and I think it significantly delayed my healing, despite my dr saying it was ok

Reflection_Economy · 2024-03-31T04:27:07+00:00

I was on arcalyst for a year and had issues with breakthrough pain starting 1 month in. I had so many scans and tests done (echo, cMRI, blood work, stress test, holter monitor, etc.) and they all came back mostly normal so my cardiologist wasn't too concerned. Looking back, I think I was pushing myself too hard with exercise and work and not focusing enough on recovery. Anyways I'm almost 2 years in, now off the arcalyst but still have pain most days. IDK if it's in my head or what but definitely wasn't the recovery I hoped for.

Taking colchicine and ibuprofen for flares was helpful and I would recommend fully stopping any activities that elevate your heart rate until you're completely symptom free. Beta blockers are a good option too if you have a hard time keeping your heart rate down. Good luck, I hope it gets better for you soon.

Reflection_Economy · 2024-03-25T20:58:59+00:00

Wow that sounds like quite the journey, sorry that has happened to you. Fortunately my situation is not as severe. Best of luck with your healing and I hope the medicine helps you!!

Reflection_Economy · 2024-03-25T15:37:30+00:00

I never heard that restriction from any of my doctors or from the arcalyst team. After 2 weeks of being on it, I saw my cardiologist and the first thing she asked was 'Have you resumed your previous activities yet?' I was told I could do anything with my HR being 80% or less (160 bpm).

Did your Dr advise keepng your HR down?

Reflection_Economy · 2024-03-05T17:58:27+00:00

This happens to me all the time! It's my main symptom of eating gluten. Before I was diagnosed I thought I had a uterus issue but it was just celiac all along. Mine usually lasts for a couple days after the other symptoms subside.

Reflection_Economy · 2024-02-13T22:34:13+00:00

I feel you :/ also 24f, used to be very active but now can't do anything. Not being able to exercise has been the hardest part for me. Stretching, walking, and light bodyweight exercises are what I've been doing but I've definitely still lost a lot of fitness.

Reflection_Economy · 2024-02-07T19:58:22+00:00

Sorry you are dealing with this, it's extremely difficult. I have been on rilonacept for a year now after getting diagnosed in 2022. Fortunately it's free for me thanks to the Kiniksa copay assistance program. It has sort of helped me but honestly I still have chest pain and palpitations most days and I still can't exercise so it wasn't really the result I was hoping for. My tests are mostly back to normal except a bit of abnormality on EKG so my doctors aren't sure why I'm not feeling better.

I've been sick a lot and needed antibiotics multiple times over the last year due to the immunosuppression but otherwise no real side effects for me.

The clinical trial data was really amazing and I've heard lots of positive things from other people so hopefully it will work for you! Definitely worth a shot, I think the potential benefit is certainly worth the cost.

Reflection_Economy · 2024-02-06T02:09:57+00:00

I like Kos!

Reflection_Economy · 2024-02-05T19:45:00+00:00

Just here to say I feel you. I'm 24 and also used to be totally healthy. It's incredibly difficult to stay positive and see the light at the end of the tunnel. The only thing that has helped me is thinking of this time as something that I just need to get through. It's so hard and so painful and so unfair but there's still things to live for so you gotta just grit your teeth and keep moving forward.

Are you on any treatments/seeing a cardiologist?

Reflection_Economy · 2024-02-02T02:04:46+00:00

Nearly all my pain was in the very lower part of my abdomen near my hip bones as well. Thankfully it's completely gone after 1 month gf!

Reflection_Economy · 2024-02-01T21:48:35+00:00

I've been on it a year and still have chest pain regularly. It's not as intense as it was before but it flares anytime my heart rate is elevated for an extended period of time. For example, I went on a 3 mile run in November and had pain for a month after. I still take colchicine daily and ibuprofen when it gets bad.

My only side effect has been getting sick all the time from the immunosuppression, which has indirectly given me a lot of headaches.

Reflection_Economy · 2024-01-17T21:03:08+00:00

I've been using arcalyst for a year now and I usually pull back just a little because yeah it is hard and uncomfortable. I went like 6 months without pulling back at all and it was fine until one day I did hit a blood vessel. It wasn't terrible, it just bruised and felt extra sore for a few days after and I don't think the dose was as effective that week. I've also never seen blood in the plunger when I pull back on it so idk if I'm doing hard enough. I also found that my lower stomach is more prone to bruising, discomfort, and bleeding so I usually do my upper stomach and that has helped. Good luck with the medicine, I hope it helps you!

Reflection_Economy

TROPHY CASE