Recurrent pericarditis

(((Hugs)))

by Lavender - 2024-04-29 22:20:52

I'm so sorry to read that you're still having recurring pericarditis. I'm sure it's been difficult. As I said before, it was awful to experience. I only had it once but it lasted for months. 
 

I am sure you're worn out and maybe this will be of help. I was treated by infectious disease doctors when I was suffering from anaplasmosis from a tick bite. Those two doctors were so helpful and knowledgeable. Perhaps you can get a consultation with your local infectious disease doctors to allay your fears. They may have more insight into this medication. 

May your body be completely healed of this trouble. May God send along comfort through the wisdom of your medical team. 

Lavender

by Mae11 - 2024-04-30 10:56:34

Thank you for the hugs, they are very much needed and appreciated! It has been extremely difficult and nearly unbearable at times. I have three young kids who are very active in sports, and I am really struggling to keep up with everything on top of the pain. On top of that, my husband and I will be coaching one of our son's baseball team.. so no slowing down in sight.

I've read on the Arcalyst site and others that it can activate latent TB. I'll speak with the rep about it when she calls me in the next few days to start my end of the process. 

Did you have pain in your back as well as your chest? There are times that feels like the worst part of it. I'm hopeful that this will bring relief, because the colchicine has not really.

Again, thank you!

I send you hugs too

by Gemita - 2024-04-30 11:42:34

Mae, I wish I could help you to feel more reassured.  Pericarditis clearly needs to be treated effectively.  You need proper rest and ongoing care and it sounds to me as though that is not something that is possible with young active children!  In the circumstances you do need some additional help.

I hope that Arcalyst will be suitable and safe for you in all respects.  It seems a very effective, fast acting medication but it does come with a few risks, but then so does leaving Pericarditis ineffectively treated.

Mae, I send you hugs too, although no one does it quite as effectively as our Lavender.  Stay safe and well xx

Back pain

by Lavender - 2024-04-30 15:10:56

Yes Mae, the back pain was awful. It hurt on the left and center directly across from the heart in back. My cardiologist had me put voltaren (diclofenac) cream on it. I did not have a pacemaker at that time, so I am not sure if voltaren is safe to use with pacemakers, you could ask. I also got a lot of comfort from ice packs front and back as well as sleeping sitting up. Leaning forward relieved pain some as well. 
 

It was the worst thing that I had ever experienced. I don't know how you're doing so much with kids and sports when you're having such discomfort!  

Gemita

by Mae11 - 2024-04-30 17:44:34

The fear of it turning to the constrictive form is a big worry and motivating factor for trying this. I'm also hoping that it will help to calm my rhythm disturbances. I'm now taking more Ivabradine than before my ablation, plus Flecainide that I was not on prior to it. 

Thank you, Gemita! All of the hugs are welcome right now! You both are so appreciated!

Lavender

by Mae11 - 2024-04-30 17:56:24

Yes, my pain is in the same location. I'll have to try the ice packs! Leaning forward is the most relief I have found, though it's minimal. 

I'm just trying my best to not let this affect my kids anymore than it already has. I feel like not doing these things with and for them would hurt so much more than the physical discomfort I have. 

Awww

by Lavender - 2024-04-30 18:46:26

You're so young and with your kids so young...it's not surprising how self sacrificing this stage of life tends to be.  It's their one and only childhood.  Remember though that you are their one and only mom so you have to insist on "me time" too. You know the old saying, "put on your own oxygen mask first or you won't be able to help anyone."