What Happened – Getting The Covid Vaccine With Preexisting Heath Issues…

As promised, here is our detailed post going over all things related to our Covid vaccine experience. 

Just as a quick background before we dive in, we never normally get flu shots or vaccines these days on our rheumatologists orders, as to not spike our immune system and cause any unwanted health flares. We knew the Covid situation was different and assumed we would be getting the Covid vaccine, but checked with our doctor just to make sure. His reply was basically to get the shot as soon as at all possible and not wait for a specific brand, but if we did have an option of which one to get, to go with Pfizer . We didn’t know which manufacturer we were going to receive until we were at the clinic but we were super relieved when we found out it was the one we were hoping for.

We were a mix of emotions while waiting for our first vaccine. Luckily, we were able to get an appointment at a hospital about 25 minutes away early in March for the first dose. We were anxious because we can both have severe side effects from medications, and we kept hearing these pretty intense stories of how people were reacting to their vaccines.

Luckily, our appointments were 10 minutes apart so we went together, got our shot (which was painless and uneventful in and of itself), then went to the waiting room afterwards to wait the recommended 15 minutes, in case there was a reaction. Because the chairs were spread pretty far apart and it was obviously busy, we were seated across the room from each other. I (Emily) was excitedly texting my close circle of friends informing them I got the vaccine when I felt my throat itch and heart race. I wasn’t even thinking of an immediate reaction when I noticed something was going on.

I walked over to Kate and before I even got a chance to say anything, she looked at me and said “my heart is racing and I feel like I can’t take a deep breath”. This was a bit comforting because I was like “oh it’s happening to her too, okay!” but we were still freaked out, worried they wouldn’t give us the second shot, then worried they would give it to us and we would have a worse reaction etc. But the good news is, within 10 minutes we felt back to normal and left shortly afterwards. 

KATE: Immediately after the injection we took our seats and I could tell my heart rate was elevated. As someone who frequently gets tachycardia, I didn’t think much of it at first, but when it didn’t lower upon sitting (which it normally does with POTS) and continued to rise until it hit about 140 I suspected it was the vaccination. Em (who was sitting next to me) was also checking her heart rate and I knew she was experiencing the same thing.

We both felt pretty sick later that evening with body aches, fatigue and chills. That continued on for the next week. I also got extreme flushing and swelling in my face and very sharp head pain/cramps which were unlike my normal migraines. Fortunately, I happened to have a virtual doctors appointment with my rheumatologist the following week and he told me that I had had an allergic reaction to one of the “vehicles” in the vaccine.

I was put on a heavy Benadryl dose and a prednisone taper (one of my least favorite meds) to start immediately. I was also told to start another taper/Benadryl combo 3 days prior to getting my second vaccination! While this didn’t thrill me, I was happy to know why I was feeling so awful and that the steroids and antihistamine would help alleviate some of my new symptoms.

EM: I also had a zoom appointment with my rheumatologist a few days before my second appointment to go over what happened after the first dose and figure out precautions I should take for my second. I was put on a prednisone taper ending the day of the second dose (because I was in a bit of a flare up anyway ) and he also put me on some antihistamines to combat the effects felt after the first dose. The doctor even prescribed an epipen for the next appointment, just in case I needed it.

Despite all of this, he was emphatic that we must get the second dose, so that weirdly took away some of the nerves. It wasn’t like ‘do we get this or don’t we’, it was ‘okay, we have to get this, so let’s prepare for the effects’. Our doctor also said expect to be down for about a week, and possibly not feel completely back to normal until the two week mark. 

Prior to getting our second dose of the Pfizer vaccine, we both spent the day together. We got our prescriptions filled up to date and went to Trader Joe’s to get some comfort foods and meals that would be easy to prepare in case we were hit hard with side effects. We also deliberately kept the following few days free, just in case. 

On the  actual day of the second vaccine, we hoped to do  something fun beforehand, but were running late so straight to the hospital we went! After we got the shot, which was easy of course, we stayed in the waiting room (although this time we were planning on being there 30 min after our vaccine instead of 15, as per our doctor’s orders). To both of our surprise and massive relief, we hardly had any immediate reaction (this is what Kate was most worried about, while I was more nervous about getting sick hours later). We went home right away because the last thing we wanted was to be out when the side effects started (although logically we knew it would be a few hours and they told us at the hospital that, on average, it takes 8-9 hours to hit). 

EM: I started to feel the effects about 7 hours in. It began with a horrible headache and then the mild fever, body aches, chills, and fatigue came. That intense period only lasted about 36 hours but I was left feeling flu-like and icky for 4 full days before turning the corner on day 5. Nothing horrendous, and even as I was going through it, I was mentally so happy and relieved to have been fully vaccinated. It’s now about 10 days since our second dose and I’d say I’m pretty much back to normal!

Tips we would recommend for those heading into their Covid vaccine appointment: 

• Try and get your appointment at a hospital, if possible. It feels safe just in case of an allergic reaction.
• Talk to your doctor about going on benadryl beforehand, if worried.
• Stay longer than 15 minutes after the vaccine if you have any ongoing illness.
• Have someone go with you. Don’t plan anything else and go home right afterwards.
• Try to keep a few days free after the shot, should you need some downtime.