A Heart Condition and My 10th Biologic

A heart condition? Say it ain’t so, Carrie!

Well, it has been a while, friends.

It’s good to be flexing my writing chops again after being home in Canada for a month. I needed a break from MSW and from my advocacy work. To be honest, the lead-up to my departure for Canada was pretty dramatic and my re-entry to Taiwan was equally as dramatic.

It’s time to give you an update about what happened! Let me update you on my newest diagnosis: a heart condition.

Before I left for Canada, I was diagnosed with a heart condition called PSVT!

I’ve had episodes of extreme tachycardia for over 10 years. The first time I went to the ER for it was in 2015. I thought I was having a heart attack. The ER determined I was having a medication interaction and it was left at that. No one ever followed up with me. I’ve flagged it at appointments to no avail.

The episodes became much worse this year. I was having episodes of extreme tachycardia and brachycardia at least six times a day or more. I asked my rheumy if he could recommend a cardiologist or if it might be related to hormones. He sent me to the gyno and she referred me to a cardiologist immediately.

Like, “Don’t fly until you get this sorted, Carrie. You’re high risk.”

These Referral City episodes are pretty common in my life. You seek help for one thing and end up seeing three more specialists before you get an answer.

Suffice to say it was pretty scary.

My heart rate shoots up to 130-150 while resting and then plummets to 45. As you can imagine, it’s not fun. It feels like I’m working out six times a day with no reward of a finely toned body or muscle mass. It feels awful and it’s scary.

The gynecologist and cardiologist took one look at my personal heart rate monitor and had me in a heart holter faster than you can say HOLTER.

I spent the last four days before flying to Canada at the hospital and stressed to the max. Naturally, the heart holter I wore showed exactly what my monitor was picking up. It also replicated what I had been documenting in my notes!

Paroxysmal supraventricular tachycardia (PSVT) is a type of abnormal heart rhythm, or arrhythmia.

It occurs when a short circuit rhythm develops in the upper chamber of the heart. This results in a regular but rapid heartbeat that starts and stops abruptly. It’s also known as SVT. (Supraventricular tachycardia)

Apparently this diagnosis is common in ER for heart arrhythmias – not that my hospital took me seriously!

If you remember my story from October 2024, I went to the ER for this exact reason along with rapid leg swelling. Given my autoimmune blood clotting disease, I thought I had another clot. ER sent me home with anxiety medication and told me to Google hyperventilating. As it turns out, it was my heart all along.

This condition can weaken your heart muscle. It also explains the dizziness and pounding feeling in my chest and head. It can also cause heart attack and stroke.

For now, my cardiologist has put me on Propranolol on a ‘needed’ basis. She wants me to take it if I feel I need it.

Let me remind you what I’ve said all along for many years on this site. When you live with autoimmune disease, it doesn’t just affect one part of your body. It sets your whole body on fire and affects every aspect of your life.

It was not fun to fly and travel for two days to Canada after learning about my heart condition.

Additionally the return journey to Taiwan was close to three days of travel and 16.5 hours on a plane. It really sucked.

While home in Canada, in addition to my heart racing all over the place, my back and joints got worse. I mentioned to my mom that I didn’t think my current primary biologic is controlling my disease. I’ve been battling edema everywhere: my face, chest, arms and legs for over a year. It’s very disturbing to see what it has done to my body. I have no idea if the edema is related to my heart in any way. I’ll ask that in my next appointment on September 15th.

Anyhoo, I flew back to Taiwan on August 15th and repeated my pattern of going directly to the hospital. Do not go home. Go directly to the doc.

It’s easy to come up with excuses when your mostly med resistant and difficult to treat inflammatory arthritis starts escalating.

My meds cause non stop infections (a well known fact in immunotherapy) so I figured the infections might be causing the high CRP numbers in my bloodwork.

Many people assume that axial spondyloarthritis is just bad arthritis. It’s not. It also affects your eyes, skin, organs, your vascular system, and your heart. AxSpA patients have a high risk for cardiovascular disease, not only because this type of arthritis attacks your immune system, but because it creates systemic inflammation that is extremely hard on your heart.

When I tested today, my blood came back dangerously high. It’s that time of year again when my meds stop working. I don’t know why it always happens this time of year but it’s consistent for over a decade. This is why we patients document everything.

CRP is a blood test that measures inflammation in your body. My CRP has continued climbing higher each month since May. This explains the awful neuro symptoms I have had in addition to the swelling and pain.

For example, excessively high C-reactive protein levels result in symptoms that include:

• Severe headaches (really bad this year)
• Fever
• Sweating, chills, or shaking
• Persistent retching or vomiting (I’ve just been nauseous a lot.)
• Persistent diarrhea (I don’t have this symptom every day.)
• Difficulty breathing (On certain days especially in the morning)
• Rapid heartbeat
• Hives or other rashes
• Body pain
• Stiffness or soreness
• Loss of consciousness (It’s good I don’t have this but dizziness and feeling like I am going to pass out are there.)

Anyways, my doc is always spot on. He predicted in 2022 that I’d be a patient who needs biologic swapping therapy every 6 months to a year and he has been right.

This is why I’ve been through so many meds. He has been switching my treatments between JAKi and IL-17 meds to try and stay ahead of my arthritis. Anti TNF are no longer an option as that class of meds caused pustular lesions that were unbearable and very painful to live with. It turned out that I’m super allergic to them.

Biologics are powerful immunosuppressants that alter your immune system, so yes, I’m that gal who has done it all. If you find my health battle hard to relate to, remember I’ve tried nine kinds of immunotherapy since 2022. These meds are really hard on your body. (But my arthritis is worse and when the meds work, my quality of life improves a bit. When they stop working it’s almost immediate.)

Not treating my arthritis is simply not an option.

I’ve asked for one month to see if the inflammation goes down and was hoping the stress of travel and just relaxing at home might be the reason this has continued and the rest might’ve been helpful. No such luck.

Looks like I’ll be moving to my 10th biologic by October at the latest. Additionally, active inflammation can aggravate a heart condition, so there’s that to consider. Here’s a look at my short journey with biologic number nine from March 7, 2025. It lasted less than six months.

This is a hard jolt of reality after three days of travel and a wonderful month at home. (I never did get the energy to prime myself up to go out for dinner with my parents though.)

That’s life with severe chronic illness and a heart condition I guess!