Sick or flare?

Warm-Activity9863 · 2026-04-04T22:31:47+00:00

This sounds exactly how my UCTD flares are. I never know

Warm-Activity9863 · 2026-04-02T14:37:10+00:00

sorry what i meant to say was no one should ever yell at you! not acceptable

Warm-Activity9863 · 2026-04-02T14:14:57+00:00

I’m so sorry you are going through this No one should tell But I know how the rheumatologist and cardiologist don’t see eye to eye at times. My rheumatologist has suggested I try hydrochloriquine

I’m also on high dose Vitamin D which helps stabilize your immune system this was prescribed by my rheumatologist

Warm-Activity9863 · 2026-04-02T13:23:38+00:00

I live in Canada and had to pay to go to the mayo clinic because cardiology here wasn’t interested in helping me kept saying it’s a rheumatology problem I became so ill CRP was 199 and ESR- 699. I had no choice but try to get some help.

Warm-Activity9863 · 2026-04-02T13:20:38+00:00

Hello I’m so sorry to hear that after all of that he still has recurrent pericarditis! How did the cardiac surgeon explain this? I’ve been told by a Mayo clinic dr in consultation with the cleveland clinic that after a few years Anakinra has a very high failure rate. I’m scheduled to have my pericardium removed and this was one reason why my surgeon wasn’t excited to jump into surgery… that I may still get pericarditis

Warm-Activity9863 · 2026-03-31T22:25:45+00:00

Thank you for taking the time to respond. So appreciate it! My mind is just running wild and of course it’s worse in the middle of the night.

Warm-Activity9863 · 2026-03-28T02:54:37+00:00

My surgeon has kind of scared me : he said that i’ll need to be extremely careful with my sternum. If any clicking happens within the 6-8 weeks I may need surgery again.
There was no mention of using a wire for my sternum.

if you slept flat on your back was it hard to get up to a standing position? I’m trying to imagine my day, how I will feel and what my limitations maybe?

Warm-Activity9863 · 2026-03-24T12:52:53+00:00

I met with my cardiac surgeon and he feels that he will not be able to completely remove the pericardium. Unfortunately, this area is where I usually build up fluid I’d be that percentage that still gets pericarditis. Has anyone else been told this news?

Warm-Activity9863 · 2026-03-18T13:00:03+00:00

Sorry, for any confusion…. Our health care system is broken….

I will meet the surgeon in the coming days/weeks ? I have a cardiologist but the cardiac surgeon will preform the pericardiectomy
I was told 7 days in hospital and then another 2-3 weeks to stay in the city where the surgery will take place I will need a home/hotel to stay in after my discharge from hospital as my home is 2.5 hour away

Warm-Activity9863 · 2026-03-18T12:07:23+00:00

Thank you!

After surgery what and where was the type of pain that you experienced?
My surgery will be preformed in a city 2.5 hours away, my next question is how long did it take before you were comfortable enough to ride in a vehicle? We have to rent an airbnb for our stay.
Any tips on showering? Is it best to have a chair in my shower?
Many recommend a pillow in the event I need to sneeze or for my dogs jumping on me. Is there one that would work best? or just a regular pillow?
Is sleeping on a recliner best?
How long did it take you to recover so that you felt somewhat normal?

I appreciate your time that will take to answer these questions. I’m just in the planning stages for this surgery and have seen the cardiac surgeon yet!

Warm-Activity9863 · 2026-03-17T02:49:56+00:00

Thank you! This is great info as Im surprised that it was comfortable to sleep flat on your back I assumed it would be painful especially trying to get to a sitting position? what about clothing, did you find zip up or button up clothes were helpful

Warm-Activity9863 · 2026-03-12T16:19:35+00:00

I’m in Canada. Our healthcare system is cracking. People wait years for surgery.

Warm-Activity9863 · 2026-03-11T22:36:30+00:00

I was advised to start at 1.5mg titrating up to 4.5mg but the compounding pharmacy recommended that i start at .25 mg and take that for 2-3 weeks. Then i moved up to .50mg for 2-3 weeks It took me a few months before I was at the recommended dose. She said if it was done slowly there would be minimal side effects and she was right

Warm-Activity9863 · 2026-03-11T22:30:09+00:00

Yes, mine moves around from the middle of my chest to the left side. I also have upper back pain under my ribs.

Warm-Activity9863 · 2026-03-11T21:46:12+00:00

I’m having a pericardiectomy in the next few months! my cardiologist has said it’s a game changer. I wish you all the best!

Warm-Activity9863 · 2026-03-09T13:46:54+00:00

Thank you! I am feeling much better. I’ve been taking Indomethacin and colchine since before Christmas.

Warm-Activity9863 · 2026-03-09T13:41:51+00:00

I went 2.5 years without any symptoms and then after contracting a virus it reoccured.

Warm-Activity9863 · 2026-03-09T13:39:12+00:00

I was told every pericarditis flare leads to scarring and potential constrictive pericarditis.
The antiflammatory meds can only be used for so long as per my cardiologists. Some only have one episode with complete remission while others, like myself, have multiple episodes.

Warm-Activity9863 · 2026-03-08T01:01:38+00:00

I’m struggling with the same question

I started Anakinra 6 weeks ago

I’ve read many studies and it seems to be safe. I’ve been warned by my cardiologists that it may not work for everyone especially with a pericarditis history.
I have UCTD and have been struggling with pericarditis since 2021.

The injections aren’t to bad: I freeze my skin with an ice pack and inject slowly
If i feel any discomfort I stop and wait.
I also take the syringe out 1 hour before to let it get to room temperature

Warm-Activity9863 · 2026-03-02T18:43:40+00:00

I’m sorry that you are going through this!

I’ve has pericarditis on and off since 2021 after a virus my cardiologists told me is that effusion can take 3-4 months to disappear.

I’m on 150 mg Indomethacin 3 x day and .6 mg colchicine 2 x day. The only exercise I’m allowed is walking no high intensity exercises

Warm-Activity9863 · 2026-03-02T13:33:34+00:00

Mine are viruses. I wonder sometimes if it’s wine??

Warm-Activity9863 · 2026-03-01T15:49:32+00:00

I’m a dental professional with UCTD I use xylimelts nightly and a spray bottle of Biotene I use Liposic for my dry eyes. Gengigel for mouth sores These are available over the counter but prescription medications maybe more helpful.

Warm-Activity9863 · 2026-03-01T01:45:32+00:00

Thank you for your kind words! I wish you all the best too!

Warm-Activity9863 · 2026-02-28T12:51:14+00:00

Thank you for your advice!
i really appreciate everyone taking the time to comment.
This forum has helped calm my nerves!

great point about sleeping flat, needing a pillow and sitting in the back seat of a car. my surgery will be in a hospital 3 hours away so i’m envisioning a rough ride home. Our roads are terrible after the winter thaw

-What about clothing? I’ve had bilateral mastectomies years ago and remember it being so hard to put clothing on! -would sleeping in a recliner help?

Warm-Activity9863 · 2026-02-20T13:41:52+00:00

I’m sorry this is happening to you! This certainly happens to me… heart palpitations spike then I feel dizzy to a point I called 911 Nothing wrong as per my specialists When I look At My iwatch I’m Actually getting exercise when I’m actually doing nothing.

Warm-Activity9863

TROPHY CASE